I Believe I Can Cry…..

This past week was ugly, in that it totally sucked. I had to admit Potato back into the hospital on Wednesday, and it was harder on my heart then any other previous time. I had to put on a brave face for him, cause my breaking down in front of him would not have helped matters. After the grueling, long day of intake, my work there was done. I squeezed him as hard as I could and told him to put that infectious smile on his face, explaining that being here is to help him, not to hurt him, and that he could call me anytime and I will answer.

As I began my long walk down to the car, I could feel my lip quivering. “Don’t do that yet. hold it together girl” I could have sworn the sidewalk was getting longer in an Alice and Wonderland strange way, as it took me what seemed like forever to get to my car. Once in the car, the waterworks began. Not light waterworks either, I was in full on Oprah ugly cry mode. I was able to pull it together enough when I got to the hotel to avoid the stares one gets when a blubbering idiot is sharing an elevator with you. I got back to my room and cried, all night and when I was done crying, I cried some more. I had decided that the next day I was going to leave the blinds closed and lay in the darkness to wallow in despair. I gave myself one day to let all my emotions out, and that is exactly what I did. One day. Thats all I would allow. I told myself that the next day I would get up, brush myself off, put one foot in front of the other and keep trekking along. I stuck to that promise to myself even though it was extremely hard. Friday I woke up ready to tackle whatever was headed my way.

Crushed. Broken. Mentally defeated. Heartsick. Beaten. Disheartened. Numb. I had all those feelings and more, and I think it’s safe to say that Potato did too. Why was this time even more painful then the others? Perhaps because we knew what to expect. Maybe because we knew how bad off he was and how badly he needed it? It could also be that I have spent more time with Potato in a visiting room this year then I have at my own house. Or it could also be that this time I am not moving and setting up camp in the city he is receiving treatment and instead just driving there on weekends. Who knows, it could have been all that or something else. I suppose it doesn’t matter why, it only matters that despite the difficulty of taking him back to the hospital, I know that is exactly where he needs to be right now. I cannot promise that my outlook will be on the positive side this whole time, I am human after all, but I can promise that I will continue to write raw and honestly about what is swirling around in my head or hurting my heart.

Throughout this process I haven’t felt the “why me?” sentiment. Many of people have said how sorry they are that I have to go through this, but I feel those feelings and prayers should go to Potato. He has every right to say “why me?”, I don’t think that I do. That’s not say that I never do, because boy have I, I just don’t feel that way right now. Our lives are not sunshines and butterflies, but if we all get real honest, whose is? The troubles in our lives might be different, but the fact that we all struggle remains the same. Some people hide it, some people fake it, some people run from it….we all deal differently. I choose to wave our dysfunction on the internet for you to read, but I assure you someone else out there is grappling with a much more severe life issue. I was given a gift in Potato, and I am thankful that for all the people that could have been chosen, I won the coveted honor of being his mom. Yes, sometimes I lose my shit and need a break, sometimes i am so exhausted that I don’t even know how I am functioning, I complain about things like every normal mom, but when it comes down to it, I have an awesome kid in Potato…..Now if only I can get him to see what I and the rest of the world can see when a connection through his beautiful blue eyes are made. Again, he is my gift. I do what any other decent mom would do if this was happening to her son. So to the comment of “I don’t know how you do it”, I say “me either”. I don’t know how to explain how I do it, I just do. It is what it is and I do what I have to, it is as simple as that (well, maybe not so simple….but doable) Potato has taught me to be a better person, not the other way around.

I still feel the sting. I am back home now and it is just not the same without him. The other boys are awesome, but even they can feel that things are not complete without Potato around. If there is one thing I am sure of, it is that we, as a family, will keep growing closer and speaking honestly in this house throughout this ordeal.

One last thing before I go….what happened to cause Potato to be hospitalized again? Well, his meds were off, WAY off. He became very zombie like and though some parents might be okay with how much easier that makes their life, I am not one of them. I can deal with lots of things, the hallucinations, his mood stability….but I can’t deal with losing my son as he becomes more unhealthy and much more medicated. I refuse to let the best parts of him to be lost in a medication. There was talk of death as Jones came back into the picture, he was seeing what he called “The underworld” in our dining room, and he lost about 23 pounds in 2 months. All that and a bit more were the leading factors to having him readmitted.

Please, say a prayer, meditate, clink your glasses and toast to Potato’s health, or send good vibes into the universe…whatever it is you do, please take a moment and do it for Potato. Don’t worry about me, I will make it out with my held high, just concentrate on little man.

Lovin’ Potato

I haven’t been writing lately. With all the tragedies happening in the past months, I kind of felt like anything that I had to say was insignificant compared to what some people have had to endure. The tornado in Moore Oklahoma that killed children and parents really jolted me. The elementary school completed flattened, and the true fear those poor children must have felt, I cried watching the news and than had to turn it off because it was just too much for me, and I was not even involved. I cannot even begin to imagine how the families in that town have gone through and what they must continue to go through as they try to heal and start over. There was also a tornado here in Texas. Add the darling, sweet autistic children who passed due to wandering then drowning. It is all so heavy and heartbreaking. To those who have been facing tragedies that are beyond comprehension, My heart aches for you in the worst way and I truly pray for you to find some peace through this beyond difficult time in your lives. I know there is nothing I can say to ease your pain, but please know I am not alone in saying prayers for your strength and peace for you and your families not only today but as time passes as well, because I know the struggle lingers longer then others realize.

Potato has been home since Mothers Day weekend. Transitions of any kind, even exciting ones, are hard for him, and coming home has been no different. He cannot handle groups of people coming over and if they do he will stay upstairs until they are all gone, we learned this a few weeks ago when we had some friends over, friends that he knows very well. His bug phobia is still around, but it has increased drastically. He loves to swim but refuses to get our pool because any piece of small dirt or a leaf is a bug in his eyes. When he is happy, he is extremely giddy and hyper. When he is down, he is a force to be reckoned with, screaming and kicking. These things are going to happen, hallucinations and mood wings will forever be a part of his life, and I need to learn to deal with it. I have to learn to be a better parent of tolerance, patience, structure and resilience, because that is what he needs. Although I would like to think I possess at least a little bit of each of those qualities, there is no such thing of too much self-improvement and I want to be the best mom I can be. We were told all of this behavior digression would happen eventually, I just didn’t expect eventually to be immediately. At first I thought this was just some bumps in the road from coming back home and it would pass, but it wasn’t and it hasn’t. It will, it just takes time.

I am on a few support groups online designed to help mothers with children with severe psych issues, such as my sweet Potato. Through there I have gained some strength and hope. NAMI has support groups every Monday right by me, so I will begin going to those tomorrow. Also, in July they offer a 6 week parenting coarse and I have signed up for that as well. You can never have to much information, especially when it comes to parenting, I will do everything in my power to be the very best mom I can be to the amazing children I have been blessed with.

Hubs and I had to come up with a list of things that would warrant him being  hospitalized again. On that list is violence, physical aggression and talk of harm towards himself or others. Believe you me, it is not a decision that comes lightly, It is a very hard thing to do. I have been hurt by Potato more times than I have ever/will ever admit, and others have been injured as well, and I have 2 other children in this house I have to keep safe and happy. When he becomes violent, it is clear I am in over my head and cannot provide him with the help he needs. It’s likely that Potato will be hospitalized numerous times throughout his life. As he grows his meds will get off balanced and adjusting them at home is not safe. Fortunately, he has been completely hands free since coming home. *woohoo*

We have declined a few invitations for get together and parties because they were  crowded and too much for Potato. Right now we just have to keep his surroundings as simple and peaceful as possible , it gets boring but it is what it is and its my job to see that he doesn’t get overstimulated because that’s a trigger for him. I do not know what will happen from minute to minute, I have to always keep my cool and offer as many coping skills as I can to help him learn to use his words, not his actions, to tell me what is wrong.

There is an upside, though. First of all, he is Potato- the kid with that ‘something special’ people are drawn to. He is loveable, he is hysterical, and he is extremely smart. His imagination is beyond what most children have. When he smiles, his eyes light up and he looks so peaceful. He is always sorry for things he has done once he calms down and realizes what happened. His heart is strong and full of love. If he has just done something that makes me grit my teeth and then makes me giggle; it is the giggle that resonates with me. His giggle, oh his giggle is something the angels praise too. Its contagious and it is all-consuming in a way that makes you smile from the inside out. It always saddens me that he cannot see these qualities in himself, because  these good qualities outweigh the negative ones, no question. Sweet Potato has a self esteem that is very low, poor nugget. Can you imagine if we all filled his bucket every single day…He would have to start believing it then, right? They say that it takes thousands to positive compliments to make up for just one negative comment. My prayer is that he is not just hearing my praise, but that he is holding onto it as hard as he can its filling his soul.

I have felt the sting of judgment on how I have chosen to handle things with all my boys during difficult times, and at first that bothered me. Have I made mistakes? Hell Yes I have, but that doesn’t make me a bad mom, it makes me human. It makes me a woman who has learned many lessons while walking this path of life, lessons I would have never learned had I not made mistakes. So while I will own my multitude of slip ups, I am in a place where I have peace in every decision I have made regarding my kids, good or bad. The people whose opinions matter most live in this house and know the daily struggle. Communication is open in this house, so if there is a problem I trust it will be brought to my attention within the confines of this house. I do not owe anyone an explanation for my decisions anymore. Actually, this latest ordeal brought us all closer.  Quite frankly, I would not change this family I created with the hubs, not ever. We are not a perfect family, but we are perfectly us; or as a wooden block in my living room says, We may not have it all together, but together we have it all.

Mac, Oats and Potato have taught me what true, unwavering love is, and I will always be grateful to you. You teach me much more than I teach you, Thank you for that.

“I pray that God will fill your heart with dreams,

and that faith gives you courage to dare to do great things.

I’m here for you whatever this life brings,

so let my LOVE give you roots that help you find your wings.”

Chorus taken from ‘Find your Wings’ by Mark Harris- one of my personal favorites

Coming home

Tomorrow is a very special day. It is the day I have been waiting many months for. My baby has completed his residential treatment and tomorrow, we pick him up. I talked to him tonight and he is so excited, said he can’t wait to snuggle with me which is good because I just want to hold him and never let go. He has worked very hard. He has had to face many challenges, mentally and physically, since December when he left, but he came out ahead like a champ! When I spoke with him today he talked about all the new coping skills he has learned and how he was going to practice them everyday. He talked of being sorry, the love he has for us, and then said he hopes that all the other kids learn their coping skills quickly so they can have the feeling of going back to their families. For the first time in his life, I could see he had some understanding of having an illness. He seemed very positive and, most importantly, proud of himself. That feeling alone made the time away worth it. Potato has always struggled with his self esteem and felt less then compared to others…he felt no self worth regardless of how often I told him how great he was. To hear my son even have a small inkling of knowing how special he is, well, that’s a feeling I can’t put into words, instead of words it is happy and proud tears. Every parent wants what is best for their child, but when you are a parent of a child who was chosen to be a little extra special, then moments like these are gold! I cant wait to scoop him up and give him “lovins”, as he would say.

I know that the rainbows and butterflies don’t last forever, and that he will be a child who will most likely be hospitalized throughout his life, but this is a moment I don’t have to think about that. For one day, all worries and fears disappear and I will relish in that while I can.

Bottom line is I have a stellar kid, 3 stellar kids actually, and tomorrow evening our family will be complete and together again!!

 

 

 

 

 

 

 

 

This song has been in my head all day, its Coming Home by Skylar Grey. some of the lyrics are:

I’m coming home

I’m coming home

Tell the world I’m coming home

Let the rain wash away

all the pain of yesterday

I know my Kingdom awaits

I’ve been forgiven of mistakes

I’m coming home

I’m coming home

Tell the world that

I’m coming home

Still far away

From where I belong

but its always darkest

before the dawn

So you can Doubt

And you can hate

but I know now

No matter what it takes

(then back up to the I’m coming home lyrics)

I am the child…..

I saw this on Facebook (page: Autism Spectrum Disorder; through my eyes) and it resonated with me. Tears rolled down my cheeks while reading it and it touched me deeply. Its sad that FB is sometimes the voice of reason! I imagine, if he could, my sweet Potato would say something similar:

“I am the child that looks healthy and fine,

I was born with ten fingers and toes.

But something is different, somewhere in my mind,

And what it is, nobody knows.

I am the child that struggles in school,

Though they say that I’m perfectly smart.

They tell me I’m lazy — can learn if I try —

But I don’t seem to know where to start.

I am the child that won’t wear the clothes

Which hurt me or bother my feet.

I dread sudden noises, can’t handle most smells,

And tastes — there are few foods I’ll eat.

I am the child that can’t catch the ball

And runs with an awkward gait.

I am the one chosen last on the team

And I cringe as I stand there and wait.

I am the child with whom no one will play

The one that gets bullied and teased

I try to fit in and I want to be liked,

But nothing I do seems to please.

I am the child that tantrums and freaks

Over things that seem petty and trite.

You’ll never know how I panic inside,

When I’m lost in my anger and fright.

I am the child that fidgets and squirms

Though I’m told to sit still and be good.

Do you think that I choose to be out of control?

Don’t you know that I would if I could?

I am the child with the broken heart

Though I act like I don’t really care.

Perhaps there’s a reason I’m made this way

Some message I’m sent to share.

For I am the child that needs to be loved

And accepted and valued too.

I am the child that is misunderstood.

I am different – but look just like you.” ♥

~By Kathy Winters

Wheat thins is no joke

I am not the type of gal who be described as politically correct. I admit, I can get a good giggle on some pretty twisted stuff. I don’t get offended easily. That being said, I do have a few hot buttons, a few places in which I draw the line. One of those is mental illness. Never ever is this topic funny to me, and that is because of the stigma involved. I can not and will not ever be a person who helps to encourage the false perception of who these children are and how hard they have it.

The way others look at people with a mental illness, the images they have of what they look like and the questioning of if it truly occurs or if the parents are the problem, those are what helps create the stigma. It is our job to make the stigma end so no longer anyone feels the need to suffer in silence.

So, back to what offends me. There is this commercial infuriates me. A puppet, presumably, a child, is in an insane asylum and is having a meltdown over his desire for wheat thins. This commercial validates the stigma of the mentally ill, what they go through, and what it is like when the seek treatment. Seeking treatment is the hardest thing a person can go through, and it is most definitely not a walk in the park. We should be praising the courage it takes to move on, not poking fun at what it might be like. To me, it feels like bullying.

This commercial, that is meant to make people laugh, only breeds intolerance and ignorance in a world where there is already plenty of that. Mental illness is not a joke. It’s not funny and it is not OK to make fun of. It is a serious thing and it should be treated as such. Lets not keep the stigma going with foolish and irresponsible stuff such as this, instead let us ban together and make sense of things while showing our unwavering support.

ironically, I found this link on a website that thinks its funny, go figure.

http://www.funnycommercialsworld.com/wheat-thins-commercial-puppet-17188.html

 

 

 

 

 

 

 

 

I’m back y’all

The past few weeks I have been feeling like my world has been imploding. I have had a lot going on for many months now, and I would like to think I have handled those things with strength and was making the best of a pretty crappy situation. Just as I began to see a light at the end of the tunnel, Life did what it does and turned everything upside down.

Potato was taken to the hospital for a possible bowel obstruction. I got that call, literally, ten minutes after walking in the door from my visit back home. I grabbed my purse and ran out the door and headed for the Children’s hospital where he was waiting in the ER. He was violently vomiting every ten minutes. It was an awful scene. He was admitted and spent a few days there…with no sleep. They ran some tests, he was given Go Lytely via a feeding tube up his nose and therefore had it coming out both ends. (side note: whoever created and named that stuff Go Lytely had obviously never used it themselves, because what is meant to come out does not do so Lytely, I assure you!)

After a few days of business coming out of both ends, he was finally starting to feel a bit better. I, however, began vomiting. I remember having a headache and being a little shaky. The rest is a bit of a blur. I woke up in the Children’s ER. No one knows if I passed out, fell, or what exactly happened. What we know is that Potato pressed the nurse call button, the nurses couldn’t wake me, so they called the ER and they came to get me. I woke up with pain in my back. They wanted to transfer me to another hospital, but I wasn’t having that. My child was upstairs, and I was not leaving him. I had them discharge me as quickly as possible and got back to my baby. Potato was discharged a few days later and went back to RTC. (although it should be noted he is still having some medical issues and will be going to see a specialist again soon).

While all this was going on, my hunky hubs drove up to be with us…which was a huge help because I had no fumes to run on anymore. Once Potato was back at RTC, I had hunky hubs take me to the doctor because my back was killing me. I knew there was more going on back there then just a strained muscle. The doctor did an x-ray and sent me to the emergency room for a CT scan because he didn’t like what he saw. From there I was admitted to the hospital (because I hadn’t spent enough time in a hospital room by now). After the CT scan I got an MRI and lo and behold I had a broken vertebrae at T6 and multiple smaller fractures all within T3 to T10.

So, I was put in a hard shell brace. I am getting another x-ray tomorrow to see if swelling has gone down so they can decide how they want to proceed and if surgery will be needed. For now, I have been told I can not drive for THREE months (sigh) and I walk using a walker or don’t walk using a wheelchair. I am supposed to move as little as possible and I am going batty with boredom! The good news is I am back home with hunky hubs, Mac and Oats and that feels great. The bad news, even worse than the pain, is that I am not able to drive to go see my sweet Potato. No matter how I look at it, the situation stinks.

I know there is a reason for all of this and at the end I will be stronger and things will be better than I ever would have thought they could be, my faith tells me that. Today though, I am feeling like enough is enough. It has been one thing after another and I just need a break from the hardships and a little good news, that’s what my mind tells me today.

***This is just an update as to where I have been lately. Better posts to come. I’M BACK Y’ALL***

Home is where your heart is…

I came home for the weekend. I was so nervous to leave and not be in a stones throw of where Potato is. I thought long and hard, and even considered my husband switching places with me for a few days so that someone was near my baby. My preference would to be in the same place as the hubs for a weekend, but that was my backup plan incase MY anxiety took over. I am comfortable with where he is, I know he will be OK and looked after…and it is not like I see him everyday anyway. I think it is just in my head that the ball could drop and I need to be close in case of emergency. There has not been one that required me to rush to the facility, but I always have that what if feeling. Parents of children like mine will get that, I think. We live in constant fear of the worst thing happening. We have it good for a while and then BAM….something happens. Sure, we are in that BAM right now, but what’s to say another strike wont occur? I am not being negative, I am just being practical.

I was able to leave without a freak out inside me, and made it home. My husband did not switch places with me. I have been home a few days and Potato has been there, three hours away from me. Guess what? I am OK. He is OK. We are all OK. I don’t feel guilty like I thought I would. I don’t feel bad about giggling with the fam and sitting here by the pool typing this post. I truly thought I would, but I am grateful I was wrong. Mom guilt is the worst kind, I know this because I have it often, but right now I am good, guilt free, and happy in the moment. I needed this. We as a family needed this. We all needed me here for a bit, a small taste of normalcy…or at least our twisted version of normalcy.

In a strange way, its been almost like a vacation for me. The strange thing is, when I came home,  I didn’t really feel at home here. Before all this current drama began, we moved to a new house. Same city, just down the road a bit where we have more privacy and a bit of land for the boys to wreak havoc on. I had a stellar decorator helping us put our thumbprint on the place, making it really represent our taste and making it feel more like “ours”. Since I have been gone, so much has been delivered and done that I had not yet seen. The house looks amazing, spectacular really…but since I haven’t really lived in it since December, I kinda feel like it’s not mine. It’s funny how the mind works. Home is where your family is, and since it is impossible for my family to be all together right now, that sense of “home” is all jagged. I realized this weekend that I am comfortable at both places, and that’s because my heart is in both places. It isn’t ideal, but it is as good as it can be in this situation, so for now that is enough for me.

I have had an epiphany, and that is this:

Our silver lining-  though we are not close in distance, we have become closer as a family. We have a great sense of integrity, understanding and appreciation for each other that may have been missing in different ways before. To find that in the midst of all this…..well, that’s truly a blessing. I am so proud to be member of this family!

‘My brother has a mental illness’

I have talked about Potato and his situation. I have also talked about what it is like for me. What I have not talked about is the impact it has on the family, particuraly my other kids. These things do not just effect the child who is living the crisis, it effects the entire dynamic of those living under our roof. Oats is still young, so though we do talk about it with him, the ways in which we do so are different, and some of the details are left out. Mac is sixteen, so he knows everything that is going on and most of the details around it, because he is at an age where he can understand it. On this post, I will be concentrating on Mac and his point of view on the important yet rarely talked about subject of the siblings.

Imagine being a child, living in household where aggression and psychosis is becoming more common. Picture the disruption of family dinners, the physical and emotional downslide, and the loss of innocence you are watching occur. Imagine these things not being a result of a bad marriage, or an abusive relationship, but rather due to your youngest brother. This is Macs reality. He has been hit or had things thrown at him by Potato. He has watched Potato go from calm to angry in 0.5 seconds. He watches on as his mother tries to hold his brother in a safe way and try to calm him down, insisting everyone leave the room to a safer place. He has seen my black eyes, my almost broken fingers, his intense meltdowns and the pain in both our eyes when Potato calms down and we are trying to get back to what we were doing to begin with.

I am painting the picture in its worst form, its not always that bad, in fact I wouldn’t even say its the norm; but it can be that bad, and its important that I acknowledge that. I have to sympathize with how things must appear for him, and I have to see how horrifyingly difficult this can be for him. Other people certainly take note, and it’s imperative that he know that I truly understand how hard this is for him as well. I don’t take that lightly, and I talk to him about it whenever he wants to. I also stress that I love him to the moon and back and that though I may be here with Potato, he is still and always will be, a priority. I need to always keep in mind that he is still a kid having to deal with what I am finding hard as an adult, and my heart hurts for him for that reason.

Simply put, I hate that for him. As my first born, he was pretty easy as a child and aside from some of the normal occasional teenage attitude, he has been an easy teen. I have never received a poor report from a teacher and he rarely gets in trouble at home, he just lays low and gets his stuff done. His heart is made of gold and he loves his brothers with such sincerity. I adore my Mac, and he is just plain amazing. I jokingly say that he was first for a reason….so that I could get a taste of motherhood in its easiest form and not be afraid to have more.

This process has not been easy for him. Mac and I have a pretty tight bond, and being away from each other has been hard for us both. He has been going through some trials of his own, and I am not right now like I usually am.. He is really good about coming to me when something is on his mind, and he doesn’t have me with him right now. We talk on the phone everyday, usually multiple times…but I know that is not the same. Since December I have only seen him a handful of times. I live in constant guilt that I cant be there in the flesh for all my kids right now.

So, he would have every right to be a little bitter. It would be understandable for him to feel like I am neglecting his needs and to have some frustration towards Potato for attracting such attention, I would certainly get that. In usual Mac form, he is handling things like a champ, being helpful around the house and with Oats, and his level of understanding is unbelievable. He has been strong and loving.

I was wondering if he would be willing to share what exactly his feelings are. He agreed to an “interview” of sorts for this blog, saying if it helps someone else then that’s what is important. (See, amazing dude, right??) I assured him that he can give me honest answers, that I will not question his answers, and that the reason of this is to get his point of view, so he can be real whether he thinks it will hurt my feelings or not. These are his answers, and his wasn’t swayed in any direction. I have also deleted any questions that made him the least bit uncomfortable.

I do have to say, that after getting his answers to these questions, I was reassured that he is, indeed, a good egg! So thoughtful and honest, my boy. I am so proud of the young man he has become and I feel blessed that I was chosen to be his mom! He never ceases to amaze me!

With that, I present you with what it is like to be a sibling of a child suffering from a mental illness:

Me:  “What is going on with Potato, in your own words, as you understand it?”

Mac: “He is hearing and seeing things that are not there telling him to do negative stuff”

Me: “Do you feel any anger about what is happening to your brother?”

Mac: “I am not angry at Potato at all, it’s not his fault… but I do have some sort of anger that he has to go through this, I guess. He is little, and it’s not fair.”

Me: “What do you enjoy most about Potato?”

Mac: “This is easy. His humor, he is so effortlessly funny. He doesn’t even have to try, it just comes natural to him.”

Me: “What bothers you the most about what Potato is going through?”

Mac: “I do not get to see him very often, which is hard because we are so close.”

Me: “What is a natural, little brother thing that Potato does that gets under your skin?”

Mac: “He is so curious and wants to get into everything in bedroom.”

Me: “What do you consider the scariest behavior that you have seen Potato do?”

Mac: “Hitting, scratching, punching, kicking and that sort of violence.”

Me: “Does being his brother give you any fear the same thing can happen to you?”

Mac: “No. I understand that he has had problems from the start and has always struggled physically and emotionally. I have always been healthy”

Me:  “What do you miss the most about Potato?”

Mac: “I miss his love, and hugs, and snuggling with him.”

Me: “Do you ever feel like your safety has been compromised by having Potato in the house?”

Mac: “In a way, yes. We have to keep our knives and scissors up high. I do not ever think he would ever do anything to hurt us in that way, but the answer is yes.”

Me: “Do you feel any embarrassment when we are out with Potato and he is talking about his hallucinations or he has a meltdown?”

Mac: “No. I don’t care about the people who are looking at us or what they think.  All I care about is Potato, what he is going through and what we can do to help.”

Me: “What are your hopes for Potato when he comes home?”

Mac: “I just want him to be himself and be comfortable in who he is.”

Me: “Do you ever feel like we care for Potato more then you because he requires more attention at times”

Mac: “Not at all. Our family does not pick favorites. We don’t have a ‘good kid’ and a ‘bad kid’. We are all equal but different and so we have different needs.”

Incredible!

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Taking care of mom in crisis mode

Like most of us, I didn’t breeze through life without any hardships. I have been through a great deal while riding this ride of life. Some were more painful then others. Most people would probably want take away the worst things that have happened in their life, the memories of a painful past and all the difficult feelings that came along with them. I am no expert, but I would guess that would be a normal and natural response, it certainly used to be mine.

Here is the deal, I don’t even come close to feeling that way anymore and I haven’t for a while. Everything I have been through served a purpose. Every terrible and agonizing event taught me something, has been a lesson learned. What makes us who we are? Its our experiences, good or bad. I know I would not have the strength to deal with Potatoes current situation had I not been through some of the things I have. I can remember certain situations where I was asking “Why?. Why is this happening?  Why me? What is the purpose of this?” and now I can look at those times and know that the purpose was to prepare me for this season of my life. I also have to hold onto faith that this situation is preparing me for something else later down the road.

I do not spend everyday with a smile on my face. I have my days where the negative over rides the positive. It happens often. In December when this round of hospitalization started, I was overwhelmed with emotion. I try to let that pass though and as Dore in the movie Nemo would say. I “just keep swimming”. I believe in the power of a positive attitude, and while I know that I can’t make all this go away, I can make a choice as to what attitude I will have when dealing with it.

As I see it, I can sit around and dwell in it and be a victim, or I can stand up it face it. How I choose to deal with this will be seen by Potato. He will take note and start to deal the same way. If he sees me emotional, he will be emotional as well. If he can feel my anxiety then he will share in that. If I let this break me, it will break him and I refuse to be the mom who teaches her son to just give up. My job is to teach him about strength and humility and faith, and that is what I intend to do. I have to instill those qualities in him, that is my job. This is an unfortunate battle that Potato will have to deal with his whole life, that is reality. I want him to grow up dealing with it the very best attitude he can, and I must lead by example. That’s not to say that I don’t sit down with a pint of ice cream and a sappy movie and allow myself a good cry, cause sometimes I do; I just am careful as to when I choose to do so.

Lately I have been asked by some wonderful well meaning folks what do I do to take care of me?  For starters, I have a shrink of my own and have for years. Since I am not home to meet with him, we have our appointments over the phone. I am strict to not miss those appointments and I am not embarrassed to tell you that I am also medicated. I wake up at the same time every morning and I start the day. I do not just lay around all day, no matter how much I want to. I fix my hair and get out of the apartment. I spend time researching what I can do to make a difference in the way childhood mental illness is dealt with and how it is seen, because that is important to me and obviously it is an issue that I deal with daily.

The last thing I do to take care of me is to write on this blog. This is my outlet. When I have something on my mind I come and sit down and start typing. I don’t think about how to word things, or what sounds good, I just let my fingers do the talking. I have never been a writer, and it is not common for me to lay everything out there for people to know. If you would have told me this time last year that I would be so open about what exactly is happening with my son and how it has impacted my life, I would have never believed it. I am rarely this raw with family and friends, much less strangers…and surprisingly this open book has become one of the best things I have ever done for myself.

https://www.facebook.com/SentiMENTALpaRANTting

 

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Never give up hope

We go through our life and endure its twist and turns. We get knocked down and we get back up. Life punches us in the throat, yet we keep breathing. There is no other option, really. So we end the day, go to sleep, and start all over again when we wake. Sometimes just waking up takes strength.

This morning I am feeling a bit of my own anxiety, but I am unsure as to why. I am thinking about Potato and wondering if his stomach cramps have finally passed. Is Jones talking to him right now? Was he finally able to get a good nights sleep, without the nightmares and voices that follow him throughout the night? Is he doing his school work? Has he learned to ask for the headphones when the noise becomes to much to handle? Is he happy today?

He has been battling these things, this time around, and he has been in some sort of hospitalization setting since before Christmas. It is currently March 5th. That is a long time, especially for an 8 year old. Hell, at 36 its been a killer amount of time for me. I chat with him on the phone, but its usually brief because he has the attention span of a nat. I visit him and our conversations about how he can’t sleep and which hallucination is speaking to him the most.

Selfishly I want him back, I want to take him home where we can all be a family again. I want to snuggle on the couch with him, and I want to hear his giggle. It feels like a lifetime has past since I heard his sweet giggle. Having family dinners, playing games, watching him pick out which stuffed animal “friend” he wants to sleep with (he has hundreds, it’s kind of his thing). I miss putting him to bed. I miss him.

This is a process, I know that. No matter how much I want him home, I know that is not a safe place for him right now. Not while the aggression and hallucinations are still present. I would rather he stay where he is at and get the help he needs then to come home when he is not ready. I have to remind myself that this is not about me and my wants and desires, this is about Potato getting the help he needs.

I admit, that can be hard, reminding myself that where he is right now is the best place for him. Realizing that the best place for him, right now, is not in my arms. Its very difficult to come to terms with because as parents we want to be the caretakers. We want to hold them when they are sick, we want to take it all away and make it better. I can’t do that for him right now, and its heart wrenching.

So, I wake up and I say my prayer for him. I let it go and lift it up. I remember that what I can do for him right now is continue my fight for him. I can bring attention to the need for better mental health care for our children. I can share this story and hope it resonates with at least one or two people who read and say, “wow, there IS someone else going through this”. I will continue to find ways to stop the stigma. I will stay strong and remain active in Potatoes treatment. I will listen to him, hear him, and let him know that we are in this together and that he will never be alone. I will explain things in terms he understands and not allow him to believe for one minute that no one cares and I will continue to plant the seeds of his strength within him. I will be his mom, protector, and biggest advocate. I will provide him with guidance and love…because all of these things are the ones I know I CAN do to help the situation.

I have received lots of emails about what a good mother I am and how strong I am. I cannot even tell you how much those kind words were needed and how they came at the absolute perfect time when I needed to hear it. I am humbled by all your support.

That being said, I truly don’t think I am doing anything more then any other parent would do in this situation. I have a hard time wrapping my head around the fact that there are parents who just do nothing in these circumstances to help their kids. I don’t feel as if I am doing anything unusual, I am just trying to be the best parent I can be and doing whatever my son needs to get some relief from this horrible pain. If anything I feel like maybe there is something more I can do, and I keep searching to find the perfect platform and the perfect answers to help not only Potato, but every child who has or will go through this, because no child should be suffering like this without a means for help.

I am just like you, putting one foot in front of the other and managing day to day life. The difficulty of a situation is all in perspective. To me, this is as hard as it gets, but you may be going through something that feels overwhelming and horrible and you see it as the very worst. Just remember, you are stronger then you may let yourself believe and you are not alone!

If you are a parent of a child with a mental illness, I want to share something I say to myself all the time. I believe in it, and I remind myself of it constantly:

Potato has a mental illness, mental illness does not have him!

I know its a long rollercoaster ride, believe me, I REALLY know, but just strap in and don’t ever throw your hands in the air because you must hang on!

(Facebook link: https://www.facebook.com/SentiMENTALpaRANTting)

Calling all new friends

My blog has it’s own Facebook page. Hope on over and “like” it if your digging the blog.

https://www.facebook.com/SentiMENTALpaRANTting

You can even share me, if you know someone who might connect with my writing. I’m looking more to raise awareness and let someone know they are not alone then to be voted most popular. Although, I do like being liked!

I’m fresh. True story.

I have not been on the ol’ blog for a few days. I created a new email for just the blog when I set it up, and I hadn’t checked that in a few days either. This is normally not any big deal, this isn’t a big blog so I don’t normally have much traffic. In fact, my friend Broccoli just asked me today how many people follow my blog, and I said “eh, not many. a few friends and family and that’s about it”.  In those few days I was gone I seem to have missed a bunch!

I opened my laptop and was just jacking around, then went and checked blog emails….and OH. MY. STARS. I had hundreds of emails. HUNDREDS. I start reading them and people are being VERY supportive, and kind, and generous with compliments. I sat there for a minute in awe. I couldn’t figure out where all these kind people, I shall now call my friends, came from. I went over to my blog facebook page to see if some blog world celebrity had suddenly shared my page. Nope. Still sitting at 82 “likes”. I go back and keep reading the emails. One mentions me being “freshly pressed”. Hmmmm. I will get to what that means in a minute.

Okay, its not that grammy I had mentioned in a previous post, but it still feels pretty darn special  to me. It’s like someone smacked me on my not so tiny hiney and said “you go girl”. I cant believe that today over 700 people read and liked what I have written! Me? It still feels strange to say that, my site stats are usually maybe 40 reads…on a good day.

To all those who read and commented…I THANK YOU, truly. From the bottom of my heart I appreciate all the kind words. You made my day. I am so humbled by your outpouring of love and support to me and my Potato! It means more then you know! The topic is so touchy and taboo…I am so happy to see its been well received. And in this lonely situation, your comments letting me know I am not alone is music to my ears. Those who are not going through this but took the time to say something, I appreciate you giving me that high five and pat on the back.

If you would like to follow me on FB you can, I’d love to have you. https://www.facebook.com/SentiMENTALpaRANTting

Back to what it means to be freshly pressed. The following information is what I found on the website (That I am honored to be in the front of):

Every day, we hand-pick eight new blog posts to highlight on the Freshly Pressed section of WordPress.com. Freshly Pressed posts can be about anything, but they all have a few things in common: they enlighten us, inspire us, entertain us, and get us talking.Freshly Pressed Screenshot Why should you care about being Freshly Pressed?

Well, why do we blog in the first place? For most of us, it’s to share our ideas with and be part of a larger community. Getting promoted to Freshly Pressed is a major traffic win that helps you with both. WordPress.com receives a huge number of page views every day (and we have a feed set up to make it easy for folks to follow our Freshly Pressed picks) so being highlighted exposes your post to a wide audience and brings you a flock of engaged new readers.

Why do we do all this? It’s our way of saying we like you. We really like you. You do incredible things on WordPress every day, and it gives us the warm fuzzies when we’re able to share them.

A few preliminaries:

  1. There are half a million of you and a handful of us, and we’re scouring the blogosphere day in and day out. If we don’t find you, it’s nothing personal – promise. Keep writing, and we’ll keep looking.
  2. We’re real people with different perspectives and tastes, so we’re drawn to different content. And we love feedback, so if a Freshly Pressed post feels really off-base to you, let us know!

Peace, Love, Rock & Blog.

T~

Meet My Boys

I read today that no one wants to read a blog where there are no pictures, no connection to the person writing. I was hesitant to do this, but ultimately I do want people to connect with my family and I. So, here you go…the first is a picture of Hunky Hubs, Mac, Oats and Potato looking so very “hand”some!    The second is me, rocking my purple tulle shirt.  Nice to meet y’all!

Dear Jones (a good-bye letter to my sons hallucination)

Dear Jones,

I certainly understand why you would want to be inside the mind of my sweet Potato. The creativity and imagination that he possesses must have been hard for you to pass up. I can’t tell you how many times I have wanted to crawl up there and see the world as he sees it.

You have been a force to be reckoned with. You have hit, and bit, and scratched. You have thrown and broken stuff. Your running commentary has tried to dismantle the quality of our lives. You hang around and spew your foul, deceitful ignorance to my baby, trying to strip him of all his self-worth.

You have really been quite slick, disappearing every once in a while just to make us comfortable, then rear your ugly head and return with force. I have to admit, you have stayed firm and really established yourself in his mind. That really doesn’t say much for you though, after all, it is easy to prey on the frail and the innocent, but you know that; that’s why your still here, right? Sticking around to see just how low you can bring him down and then revel in delight.

Now it’s time for you to listen!  You have chosen the wrong mind to invade, dear Jones. Your strength, albeit strong, is nothing compared to the strength that lies within my son. You may have had a stay in his mind for a while, but you have not, will not, and can not touch his heart or his precious soul. Consider yourself under attack.

Potato is never alone, I assure you. He is backed up by the greatest power of us all. He is being lifted up in  prayer a plenty and I assure you there is strength in numbers.  My young, charming boy has many angels in heaven that wrap him in love and watch over continually.  His spirit is gentle and kind, but don’t mistake that for weakness, as it is stronger than you might have initially thought.

He has a heart full of Grace and Virtue. His soul is spunky and loving. He is humorous, clever, abundance in spirit and sensitivity. Loving, enthusiastic, saucy, witty and considerate, he is a true original and not even you can take that away.

In his short eight years, he has run through more obstacles than most do in a lifetime. He didn’t get past those by waving the white flag. No, he has blood, sweat and tears to prove his fight well fought. He will overcome anything you send his way and you will not even be in our memories, because you are not worthy of taking any more space in his, or anyone else’s mind.

Be warned, hell hath no fury like a mother scorned. I will stop at nothing to see you leave. NOTHING!  When my baby feels weak, I will fight for him. When he sees you I will cover his eyes. When he hears you, I will sing to him and drown you out. You are most certainly not stronger than the love I have for him. Let me be clear, you do not even come close to touching the admiration I have for and confidence I have in my amazing son.

My baby is a beautiful reality and you are nothing short of a fraud. So, I bid you an official goodbye Jones, forever.

House of cards

We are now in a new city, and Potato is an RTC. I don’t get to see him that often and talk to him very little. I could easily, as most people do, leave him there and go home, just coming up on weekends. I use the term “easy” loosely, because though that might be what others find the easy thing to do, I struggle to have that easy feeling. I have leased an apartment and am staying close by. There is nothing easy about leaving my 8 year somewhere and not being a close incase something happens. I am thinking about him, but I know that I am being selfish in a way too….because I can’t even wrap my head around leaving him. His hallucinations are still very present, and there is no telling what that could lead to.

I have other kids though, and a husband at home. I have already been gone for 2 months, and will be much longer. I know that they too need me. I have not yet found a way to make peace with the fact there is only one of me and I can’t be in two places at once. I have different special bonds with each of my kids, and I think they understand and agree that right I need to be with Potato. I try to make sure they know I am not picking Potatoes needs over theirs, and that I would be doing the very same thing for each of them if the circumstances different.

My job, and my greatest pleasure in life, is being a mom. I want to be the kind of mom that makes all my kids feel extra special in their own way. Am I doing a good enough job at that when I am not with all of them? I hope so, there is definitely not a lack of telling them how I feel. When I am living hours away from my family, do they still know how very much they mean to me? I kind of feel like I am in a “damned if I do, damned if I don’t” situation. If I go home I feel like I am abandoning my smallest child, but if I stay I feel like I am abandoning the rest of my family. It is a painful predicament no matter how I look at it.

My apartment backs up to the epicenter of play in the complex. The place where all the kids go to ride bikes, play basketball, throw a football, and run around to each others place. I sit out in the tiny porch and watch them play and it makes me sad. Sad that I don’t have my kiddos to introduce to these kids. I find myself saying “are you OK, buddy” when I see a kid fall off his bike, and I yell “Great catch” at the kids playing football. I am that strange woman who appears single and likes to watch kids play. I bought some juice for the kids, but now I am wondering if that would appear creepy. The point is I want to care for them, these children I watch play everyday, which is probably my desire to be hands on caring for my kids, and right now I can’t.

I had settled in where we had been. I was very comfortable with where he was and I had gotten to know the hotel employees like they were old friends. Now I am in a new place and starting that all over again. The city we are in now is where I lived for a while when I first left home. I got married to my first husband here. I have one good memory here, and that was the birth of Mac, two weeks after he was born I headed back to my hometown. All other memories here stink. My first marriage was not a pleasant one (I was young and dumb), it was full of rif raf and drama. I never really went out explored the town, mostly because I was not “allowed” to. (haha….as if I would let anyone tell me what is and is not allowed these days) I was a completely different person back them, and a low self esteem was somebody elses gain. I never had the desire to ever come back here because of those bad memories, so, although I am happy to have found a place that can hopefully help my Potato, I am also having to make peace with a nasty past I feel while being here.

When life gets this hard and your heart is breaking in unimaginable ways, you really learn more about the people close to you. Some people whom I didn’t know how very much they would be there for me have bee my rock, some people mean well but throw a few gentle digs in that make it harder, and some people I thought would be the most supportive I haven’t really heard from much. I am sure its a matter of not knowing what to say. They cant say “I know how you feel” because I don’t personally know anyone who does. I am sure they do not want to constantly ask questions about how Potato is doing, but they don’t want to make it seem like they don’t care by talking about what’s going on with themselves, that’s just a guess. I know that I can’t complain to much, I have been a poor friend to others while going through this. I have been engulfed in these deep waters, and when your trying to keep from drowning it hard to reach out to others.

At the end of the day, this day and all the others, this situation is more difficult then any other I have ever been put up against. I could lose it and end up in a facility myself, I could deny the issue all together and pretend everything is fine, but those are not viable options. It is what it is. The cards have been dealt and there is no other choice but to do my very best with the cards we were given. I have faith, but some days even that is tested. I can sit and scream “WHY”, but the answer to that probably will not be seen until I am far away from the situation. What is meant to be, will be. In the meantime, I am going to try to build a house of cards, because though I can’t change what cards we have been given,  I can change what game I am going to play with those cards….and I am not taking a chance on poker! I will keep the cards as they are, and rock out a house of cards like no other.

And the Grammy goes to…

Have you seen the commercial for the new movie ‘Identity Theft’ with Justin Bateman and Melissa McCarthy? There is a part where Melissa is singing at the top of her lungs in the car, and Justin keeps changing the channel to get her to stop…..but she knows every song that comes on, and she has dance moves to match it? That is SO me. It drives Mac insane, he would be the Justin Bateman in my car. I don’t know why, I have mad skills.

(You can see the preview at the 2:09 mark here: http://www.youtube.com/watch?v=uO12W35DpsQ

Anyhoo, I was just sitting here watching the beautiful LL Cool J host the Grammys, and it got me to thinking, what if there was a Grammy for Best Car performance?!? I would have it in the bag, no doubt I would be headed to that stage to snag that coveted award. What would I wear? What would my fake surprise face look like? What would I say in my acceptance speech?

As for my attire, I would want to be true to me. I don’t get all fancy pants often, so I would want to wear something that I would normally be wearing when driving around with the kids, something that screams ‘T’. Some black calf length yoga pants, you know, the ones I wear often but never go to yoga in. I have plenty of these, so that would be easy.

My top would probably be one of my favorite Tee shirts…I would probably let my fans choose which ones via Facebook. It would either be my old school, had it forever Depeche Mode concert Tee. Yes, it has holes in it but isn’t that all the rage these days? People pay good money for tore up jeans. The other choice would be my shirt that has a tiny cooler on it and in a little cartoon bubble it says “don’t hate me because I’m just a little cooler”. Classic! Which one would YOU choose?

Shoes? Easy peasy, my most favorite flip-flops. The ones people always ask about and comment on, the ones that separate each toe. I know that Joan Rivers would be talking about these bad boys the next day for sure. She would say “her outfit was hideous, but those shoes were brilliant”

Onto the surprise face. I don’t really do a very good job at pretending. So I think the fake shock face would not be believable. So I would probably just stand up and do the happy dance and say something like “in your face, you other mom, you”!

Acceptance speech. I see it going something like this:

“OhMyGosh….I was totally expecting this. It was not an honor to be nominated, as all the others in this category who weren’t quite good enough, are now realizing. It is, however, a huge honor to be right in knowing I would win. Being right is one of my favorite hobbies! I would like to thank hubs for loving me despite my quirks. Mac, Oats and Potato, thank you so much for always being there, without the ability to embarrass you, I would be nowhere. Thanks to the Lord who bestowed on me this amazing talent. Shout out to my “buffet” of friends. To the snotty PTA moms who laughed at me as I was working my moves in the pickup line and always thought I was a little different….whose laughing now?! For all the other moms out there trying hard to make it in this car performance industry, keep on keepin’ on and don’t ever let a “mom, stop it” hold you back. Let’s get FUNKED up, y’all!”

What. A. Night. I will never forget this dream evening for as long as I live.

It’s time we talk

There needs to be a change in the way mental health is treated (or should I say not treated) in this country. Serious mental illness statistics are astonishing and continue to grow, that fact cannot be ignored. It is said that one of every five Americans live with some type of mental illness; depression, anxiety, panic attacks, bipolar, ADHD, the list goes on, some being a little more severe then others.

Take a look at some of the ways severe and untreated mental illness have affected our nation and you will clearly see the outcome of no support can be extremely terrifying. As we have seen in recent years, if left untreated it can ravage the brain and cause horrific, senseless tragedies. The awful symptoms can take an even-tempered sweetheart and create a violent and enraged individual. A serious mental illness can take over a person’s brain, and twist it in unimaginable ways.

It is alarmingly difficult to get help for a child with a mental illness. Much like someone who is blind must learn to read braille, or a person who is deaf must learn sign language to communicate, those with a serious mental illness must be taught coping skills to function and survive properly in society. Would we ever tell a person with diabetes to not take their insulin? Would a hospital turn away a cancer patient and refuse them the chemotherapy and treatments needed to fight the battle before them? Many of these children have lost control of themselves, and the control has shifted to the illness. The inadequacy of respectful and affordable help disgusts me.

Mental illness is, just as it sounds, an illness. It is a disease in the brain, the single most important organ in your body. It can be in ones chemical makeup, predisposed to it before they are born. It can be caused by traumatic experiences, and neurological disorders. No one should be refused treatment for an illness that they have no control over, especially today when we have actual proof of the harm it can cause..

What are you considering to be the cause of the outbreak of violence? Gun control laws are too lenient?  Video games have become to violent? Parents are being to lax in discipline? These are the debates I am seeing all over the news. It is simple to start there, to place the blame on these factors. It takes Strength and courage to dig deeper, and to really investigate the underlying issue.

We have a moral responsibility to help all those who are sick. We need to stick together and need to be loud. We need congress to not just hear us, but to stand up and take action to fight for us. Fight for us parents who deeply love our children and want them to live happy and successful lives. Fight for the precious children themselves whose minds are in constant chaos. We must act now, more time wasted can have extreme consequences and getting no help is unacceptable. Our children are worth it and they deserve better.

Let me be clear, I am not saying what has happened recently all over the world should be excused. I am saying that the health care system has failed some of these children terribly, and just as they are being held accountable for their actions, the powers that be should be held accountable for not making mental health a top priority.

This is a discussion that should be happening more often. It should not be happening only when a tragedy occurs and people say why. With proper mental health checks and help for the children who need it, we have the chance to prevent more tragedies. If we can make a difference to help the children who are the future of America, why would we not be taking more steps to do that? Children cannot help themselves, we must take steps to assist them to be there very best them that they can be. They are suffering. It is a heartbreaking thing to watch a child live with. They cannot continue to fall through the cracks. I, personally, will not be ignored.

Just like people say “Guns don’t kill people, people kill people”, the same could be said for Mental illness. More often then not, a child who suffers with this does not go out and kill people. They are children with a huge heart, happy souls, and precious faces. I am just trying to get a point across, that if what is going on in the world today doesn’t lead a change to the mental health system, I don’t know what will.

It’s not just the person suffering from the illness who need educated, our entire population needs to learn more about it so it is no longer such a taboo topic. Those dealing with mental illness should not be led to isolation due to others ignorance. We need to understand that a child is much more than their illness and whatever they suffer from does not define them. It is a problem that affects us all in one way or another, and we all need to be more open to closing the gap on the awful stigma that surrounds it so people can be more comfortable with talking about it. This cannot continue to be a subject of judgment.

“Be the change you want to see in the world”

Diagnosis is a bad word

I struggle with getting a diagnosis for Potato. On the one hand, I want to know the exact term so I can learn about it. Knowledge is power…right? Well, not always. What I tend to do is look it up on the Internet, which we established in another post is my best friend and my worst enemy at the same time. Best friend because there is so much information out there, there is nothing you can’t find. Worst enemy for the very same reason, because there is not anything you can’t find and sometimes that means the worst of the worst information. So, on the other hand, learning a diagnosis is not necessary because I feel like in the end, no matter how we “label” it, it has to be dealt with the same way. A specific diagnosis does not change the way it has to be coped with, the way he learns to process things, etc. It’s tricky. I want to know, but I don’t want to know. Sometimes a new diagnosis can just scare me but sometimes a new diagnosis can fit all the pieces together. Am I confusing you yet? Yep, that’s the whirlwind that is my head.

It’s not often that I let people in on exactly how serious things have gotten. Maybe that’s my twinge of denial, maybe it’s because I feel I have failed him in some way, maybe I just didn’t want to say it out loud, or maybe it is that this is so very personal and deep I just haven’t been comfortable with sharing every detail of the aggression, the pain, the intensity of the struggle to keep him function-able in life. I have felt the eyes of judgment for years now, the feeling that others don’t not want their kids around mine and then that ever present judgment that I am not parenting well enough. Sometimes its because of what people say that makes me feel judged, and sometimes it is what they don’t say and rather how they act. What I know for sure is that I have always tried to be mindful of where Potato is in his head, and if I see any inkling that things could possibly turn ugly, I keep him away. I would never ever put other kids in harms way. This means we have missed many a birthday party or get together, and selfishly I want to go, but when there are other kids involved I do not take chances.

Potatoes psychosis has gone through the roof, even feeling “Jones” (The name he has for one of his voices) pinch him and hit him. He begs Jones to stop, he cries that it hurts. It is the most bizarre thing to watch. Jones isn’t new, he has been around for a while. There is also ‘Molie” (pronounced Mow-lee), but she appears to be less violent, more a talker then a do-er. Sometimes she is even the voice of reason. For many years Potato described these voices as Spider-Man characters, and I thought it was just his very active imagination. I thought he was just having trouble discerning reality vs super-hero characters. Doc Oc would be on the ceiling watching him, Venom was telling him to do bad things and was controlling his body. I mean, he was young, and his imagination was a viable conclusion. He would hide under desks in fear. It was concerning, yes, and we had many a school conference about it…but it didn’t immediately make me think he was psychotic. He was seeing a play therapist, a psychiatrist, an amazing O/T and a P/T. I was doing everything I knew how to do. All involved thought this was just his very, VERY, vivid imagination, including me. We did the best we could with what we knew. Always 20/20 after, I can now see those times for what they were, psychotic episodes.

There is a lot between then and now. Medications, different therapies, feelings of inadequacy, comparing himself to others, harsh words sent his way, difficulty forming relationships, a suffering self esteem, he became anxiety ridden, picking at his skin, sleeping problems, erratic moods…..but I would like to skip to the present.

Potato got a new diagnosis yesterday. Its one that I have thought about before, but didn’t really let myself go there. I remember a long time ago I read about it, thought it sounded like Potato, then put it in the back of my head and didn’t think about it again at all until the Doc brought it up yesterday. It certainly logically makes sense, and it does in fact fit some pieces of his extensive puzzle together. But this diagnosis is a biggie. Its a rare one and it is a doozy! I do not know anyone with this, nor anyone who has a child suffering with this, making it that much more scary. Potato has schizoaffective disorder. Shcizo being the psychotic component and affective being the mood componanent (bipolar), There it is, Its said. Its written. When I hit publish I can’t take it back. This is more real and honest about what is going on then I have ever been, and its scary.

The doctor sat me down and made it clear that Potatoes neurological disorder plays a big part in his issues, and that I could not have prevented any of this. He said that actually he has come a very long way considering all that has been stacked against him since arriving into this world and I should pat myself on the back for that because so many kids with his brain abnormality don’t even progress developmentally as far as he has. He explained that he thinks I have done great things for him getting him all of his therapies and specialists and advocating for him. He took the time to make sure I do not blame myself. Dr. H must have seen that I was “in it”….(it was probably the obnoxious, huge, fearful tears that that tipped him off. ;)) I appreciated him taking the time to tell me all that, but it felt so deep and his face was so very serious I almost felt I was in an E.R. waiting on test results to see if I had a serious medical condition, and that’s exactly what it was, only worse because it was Potatoes serious medical condition. Yes, I consider this physiological. The illness in a mind is still an illness.

All of this brings me back to the beginning. The diagnosis. Good to know, yet still has to be treated and coped with no differently then we have already been trying. Does the diagnosis matter? Maybe it will help my family and friends, maybe they can read about it and gain some knowledge from that, and truthfully maybe it will help me gain some insight as well.

So, now what?!? I get him all the help he needs and I love and squeeze him the same. I haven’t thought any further then that. Right now I just need to process and deal so that I can continue to advocate for him and be all he needs me to be.

“Your in it right now, aren’t you?”

One of my favorite movies is Garden State. I love it. It’s funny, quirky, and deep at the same time, three things I adore. This quote from that movie is resonating with me right now. Allow me to share:

Sam (played by Natalie Portman): “You’re in it right now, aren’t you? My mom always says that, when she can see I’m like working something out in my head, she’s like, ‘you’re in it right now’ and I’m looking and you’re telling this story, and you’re definitely in it.”

Today I am, without a doubt, ‘in it’.

Inpatient was hard for Potato in the beginning. He wasn’t sleeping well, he was frustrated, aggressive, on edge, moody, restless, and anxious. That started to improve, and though a few of his passes were got tricky, he was discharged from inpatient residential last Wednesday and admitted to partial treatment. In the week since then, life has been a whirlwind of good and bad, and the bad has begun to outweigh the good. He is back to being aggressive, his moods are not stabilized, he is paranoid, and his psychosis has reared its ugly head; he is hearing footsteps which he believes are ‘the voices’ coming to get him and last night he was writhing in pain and was in the ugly cry because the voices were pinching his arm and it hurt. It saddens me to say that today he is being readmitted into the acute program. His amazing Dr. says that he decompressed so quickly out of the hospital, that he believes he will need a longer length of treatment then we had originally thought. I am researching residential programs closer to home, because at this point the doc and I agree its important the whole family is involved in Potatoes treatment. He will stay here until I find a place to transfer him to, and there is no rush so I can really do intensive research and find a top-notch place for him to spend what will probably be at least 6-9 weeks. (update: maybe longer)

This is harder for me then I would ever be able to put into words. I simply cannot express my feelings about this within the confines of this blog or even the confines of my heart for that matter. My prayer is that someone, somewhere has some small inkling of what I am feeling and in that they will feel less alone then I do right now. Not the loneliness of having no friends, as I am blessed to have some superior ones who love me and my boys. I am not even speaking of the loneliness of no faith, because my personal spiritual beliefs are ones that do not fail. What I am talking about is the loneliness of this situational experience, the feeling that there is nobody out there who can say “I know how you feel” and really mean it, the feeling that this deep pain is not shared by anyone else.

Nothing takes you to the  “in it”  place quite like the way my unique situation has.. The reality of all this seems so surreal. The ups, the downs, and even the sideways are making me dizzy. It truly is one step forward and two steps back. I am sincerely trying to put one foot in front of the other, keep on truckin’, take one day at a time and all other similar figures of speech; but the movements are S-L-O-W, heartbreaking and achingly slow. This is no different then having a child in the hospital for a medical illness or diagnosis that you can’t change. It may be a silent illness, but it is an illness none the less. Imagine your child with a fever and the flu, you can’t stand to see them in that pain, right? That’s a sickness you know will pass in a week or so. Potatoes issues will not fade in a week, on the contrary, they will not fade ever. I would gladly take his troubles and keep them as my own if I could, without a second thought. If only it were that easy.

When I say how hard it is for me to deal with all this at thirty something, I step back and think how it must feel to be Potato. He is eight. At eight my worries were being home by the time the street lights came on, if I could spend the night with my neighbor, and wondering what was for dinner that night. I can’t even begin to imagine what it must feel like for him; to not be capable of controlling his feelings and feel happy one minute and with the flip of a switch be pissed off and not knowing why, to feel so very different from all the other kids around him, to truly feel like there is something trying to get him, to have such pure difficulty with learning, to have such a low self esteem, to feel judged by behaviors he can’t always control and to feel in all aspects of his life he just isn’t good enough. That’s heavy stuff that would knock down even the strongest of adults. It shouldn’t be eight year old concerns. To me and to most people who know him, he is an extremely special and charismatic individual. More than anything, I wish I could put my glasses on him and allow him to see himself through my eyes.

I cannot change this for my child, and that kills me. I can’t catch the thief that has entered his head and taken my baby away, and that kills me. The only thing I know I know how to do is to reach out to others and spread the word that I really do know how you feel. There is no denying how bad this sucks, but maybe, just maybe, I can find others, form new friendships, and do my best to help another person through their difficult journey with their precious child. Pease help me to reach these mom and dads and spread my love and understanding to an audience that is bigger then my own, because we moms and dads must stick together and support one another.

Happy flying when others are whining

When Potato and I went home for two days this past weekend, we flew. Yes, its only a five-hour drive, but five-hour there and five hours back makes ten hours of driving, ten hours we could be spending with our family. I got a cheap flight on Southwest, and that just made more sense to me. Potato was not in the best of moods when coming back, seeing as I was ripping him away from home again, not to mention he is not a lover of flying in general anyway.

I was able to get us pre boarding rights, due to his easily over stimulated nature and his not doing well with crowds. I got some dirty looks from others who were waiting for their turn to regular board, but I didn’t care much…just because he doesn’t look like he needs it doesn’t make the need any less significant. Call it taking advantage of the situation if you like, but I see nothing wrong with what I did. Regular boarding gets insane, people will knock you down in a hot minute just to get in front of you. That simply doesn’t go well for Potato. The way I see it, there are very few perks in Potatoes situation, and I am not ashamed to say I take the ones I can get.

Flying with a child can have its challenges (and I am not even talking about special needs kids, I am talking about kids in general) . I came home and looked on the World Wide Web, where you can find an opinion ANYTHING, to see what other people consider the “rules of etiquette” when flying with a child. I was reading one article and laughing out loud because it was written by someone without kids. Really? Everyone knows that when you don’t have kids, or don’t work with kids, you are automatically the expert on how to handle other people’s children. These all-knowing individuals are my favorite. I can’t wait to hear what they have to say after they have a few of their own.

With all that in mind, I would like to present to you my own list of rules for flying with children on board:

*If you are already seated and a family is coming down the awkwardly small walkway to find a seat, move your body parts from said walkway. I am not talking about moving to be nice, I am telling you to move so you don’t lose a limb. My kid has a carry on for all his games, toys, stuffed animals, and any other item that caught his eye as we were leaving our house. It is highly possible you will be short a toe or two if you don’t make way for my childs belongings. Obviously, you have already made your way onto the aircraft and stowed your belongings like a champ, so please, for your own safety, move just a bit so we can do the same.

*Do not tell my kid to read the safety instruction manual. If you are the flight attendant, by all means get out of the seat beside us and start doing your job. Not a flight attendant or pilot? Then kindly shut your grill and let me handle this. Not that its your business, but my kid can’t read and I have flown enough that I know what we need to do, and I got this as it is not my first rodeo.

*I’m sure you have had a long day, maybe you haven’t been sleeping well, whatever, its none of my business. You want a nap, that’s cool, but if you are going to recline your seat all the way back, I’m going to need you to not complain about my kid touching or kicking your seat. It is physically impossible for him not to touch your chair when you have practically laid it in his lap. Unless I am flying Virgin airlines and your name is Russell Branson, you can’t have the best of both worlds, so move your seat up or accept that my child simply cannot sit perfectly still the whole flight while you are off in dreamland.

*This isn’t some super flying library, so take your librarian hat off and stop asking me to tell my kid to be quiet. He might be talking a wee bit loud, but you may notice (and I know you do since you seem to be tuned in to our every move and chat) that I am trying to shush him down a tad. He isn’t screaming, his ears have popped and he can’t hear me, so he thinks I can’t hear him either, so he is talking louder to tell me…

*This may come as a surprise, but my kid has to make a wee sometimes. Yes, this may mean that we will have to get up from our seat to make our way to the restroom, and it also means we will have to return to our seats. I’m sorry to interrupt your soduku game, I really am. The alternative is him whipping his weasel out to make a wee in a small cup from his seat, so I am assuming you would prefer us asking you to please excuse us so we can get by and take of business.

*We would have prefered a window seat, but there were not any available. I have done you a big favor by placing myself beside you in the middle seat and given my kidlet the aisle seat. I did this so my child would not be bothering you, because I do have some common sense and a little sense as to what bothers people. With you being at the window though, my son will be reaching over me in an attempt to look out of it. Please don’t close it when you know he is trying to see out of it. He just wants to see the clouds and what’s below. Take a deep breath and channel your inner child, then open up your window and let the littles have a looksie.

 

Print this out and just hand it to people close to you and your kids when on your next mid-air journey, and hopefully it will resonate with at least one of them.

Happy Flying!

 

Whine time.

I am home for the first time in over a month. Just for 2 days, but hey, that’s something. For those of you haven’t read all my posts (shame on you) I’ll catch you up. Potato has been in a hospital-ish facility about 5 hours away from home since before Christmas and I have been staying in a hotel there. A few months ago I would have told you that going to stay in a hotel for a while would be an ideal luxury, a way to run away from all the kids and stress and have some me time. Ha. Thats so not what its been. Its lonely, uncomfortable, boring, and did I mention lonely? There is nobody there to laugh at my jokes, and though I entertain myself pretty well, sometimes an audience is nice. Its been hell. I couldn’t wait to come home for the weekend and relax. Double ha. Relax in this house? The dishes are piled up, everything needs dusted, bathrooms need cleaned, Oats has Lacrosse practice, laundry needs done….the house needs vacuumed, and cleaned, like really cleaned. Tonight at dinner we were talking about what I did today, and when asked if anyone else was cleaning, Oats even replied with “Nobody ever really helps her with that kind of stuff.” Thanks for noticing, bud, now please rally the troops for a joint “Casserole Clean Up” session! For reals….get moving.

Then there is the constant need to have an eye on Potato. Where is he? What is he doing? Doctor orders are to make sure we know where he is at all times, and I always do that, but today my pupils are exhausted. Don’t let him get overstimulated. No over excitement, and watch for signs that a eruption of upset may be coming. The pressure is enormous. Ask every 15 minutes what he is feeling, and ask him to point that feeling out on our extensive feelings chart. I don’t know about you, but I do not want to stop what I am doing every flippin’ fifteen minutes to tell you how I feel, and I am perfectly capable of stating my feelings. Potato has extreme trouble defining his feelings, and he certainly doesn’t like to be interrupted from whatever he is pretending to be every fifteen minutes. This has caused meltdown a plenty for him. The answer I receive the most, you ask? “I don’t know, okay?! Stop asking me that. Leave me alone!” said with force. It generally takes ten minutes for him to finally give me a feeling word, so I have five minutes before it is time to ask again, and then again, and then again. You know what is triggering him? It’s my constant baggering. Its bothering him, its even bothering me!

Any thoughts I may have let slip in about this being a chill visit back home have quickly faded. It is not any less stressful here then it is there. The difficulty of the situation does not go away regardless of where we are. My husband is here, but he hasn’t been in the trenches of the how to not fry your Potato classes. The only difference right now between here and there is I get to sit and lay on furniture that is more comfortable then anything my not so tiny hiney has sat on in quite some time. And the loved ones, let’s give them a shout out, they are a highlight as well (even though they don’t help me clean).

A survey has been completed and the results show that 1 out of 3 food group children believe I am “the worst mom in the world”. Do you think there is a trophy that comes along with that title? I would love to have a token of this statement to display in my office. I have certainly heard it enough times to make it official and to earn an award for it. Nothing to fancy, just a WWM (Worlds Worst Mom) momento, I mean I have worked my ass off for that title. Good thing I have tough skin, because if I got my feelings hurt every time Potato threw some negative words my way, I would be an even worse basket case then I am already.

Aside from asking how he feels every fifteen minutes, I am telling him “good job looking me in the eye, slow down so you can think about what you are saying (he gets caught up talking and has trouble completing a thought), thanks for using your inside voice, use nice words, say thank you, those hands need to stay to yourself, it’s okay you have some time to think about what your feeling, remember what we talked about”, and a bazillion other things. Every minute is a reminder, a praise, and a request for a feeling. I am sure by now he wants to reach into my throat and painfully rip out my larynx. Unfortunately for him, it is my job as his mother to nag at him and I take my job seriously! How am I typing this and still doing all those things? I am skilled multi tasker, it’s a gift. I have also saved this draft over and over again throughout the day.

I am planner. I make lists and I even have lists about the lists that need to be made. I am a “check my schedule” kinda gal. I don’t fly by the seat of my pants very well. I suppose it could be considered slightly obsessive. Its a running joke between my sister and I, because she is a major last minute Mary, and it drives me insane in the membrane. When you have a little Potato like mine, structure and schedules are key, everyone knows this. At the same time, you never know whats going to happen or what is going to set him off, therefore turning your plans upside down. In other words, we live in a constant state of controlled chaos. Its maddening.

****Example: Today things were perfect for about half a second when he was enjoying a snack. He jumped up and out of nowhere refused to eat his snack at the table without someone sitting in the seat next to him. Scared the bejeezus out of me, it happened that fast. I almost jumped up in my best karate kid stance ready to fight. (Ummm, I hope the Potatointernologist realizes there are not always signs for what with set him off, and surely no flouresant arrow blinking signs…..though that would always be mighty helpful). I was literally no more then 4 steps away, in crystal clear view. He went Fifty Shades of Cray on us and after about 15 minutes of screaming at the top of his lungs, my need for Xanax went through the roof. I can’t step in and do anything…what am I going to do anyway? Yell back… not helpful. Mental power struggle…I’m not even convinced I had the mental capacity to play that game (for those of you thinking “not in my house”, I assure you the power struggles aren’t helpful and if you need proof, come be me for a few days) I can’t physically remove him from the room. No joke, when he is that upset he turns from innocent 8 year old to the angry green incredible hulk in 0.5 seconds. He is sincerly at a place in his head that I cannot reach and at this point there is no reasoning. The best thing to do is ignore and wait for him to calm down.  At the end, he was no longer hungry. Huh?! Say what? All that and he didn’t even want the blasted noodles anymore?! Go figure. ****

The moral of the story? I was one salad short of a picnic today. That’s it. Did you think there would be more? Some big Oprah a-ha moment and some wise words? Nope. Just a list of things to complain about. Back off….I’m due for some whine time and this is my page so I can do what I want to. Don’t I sound like gem today? Motherhood will do that to you.

Yes, I’m talking to you

Today I am speaking to a particular demographic. If you read this and think I am talking to you, then you are probably right.

I may not know you, but I do know struggles, heartbreak, and difficulty. Though we may not be dealing with similar situations, sometimes we all need to know we are not alone. Tonight, you are not alone.

This quotes for you.

“Anyone can give up, it’s the easiest thing to do. To hold it together when everyone else would understand if you fell apart, that is true strength,” -Christopher Reeves

Tennessee Teen Homecoming

My sister in law shared this on Facebook, and I just felt it needed to be shared with you. Its a touching story I urge you to read. (link below)

These are the stories I love to read, The stories that make me tear up because it touches my heart in the most wonderful way. To be so compassionate and generous in their high school years says so much about them and their future. A big heartfelt high five goes out to Jesse Cooper, Drew Gibbs, and Zeke Grissom for unanimously handing the homecoming title over to Scotty Maloney. They did this with the most sincere intentions, noting that Scotty is always smiling and they wanted him to have something special to look back to his high school years on. They looked at and appreciated what made him so special…his heart, his charisma, his smile…all of which made his so charming. They did not see the (dis)ability, they just saw Scotty. What great young men these boys have turned out to be. I commend them for their kindness and selflessness! Thank you for giving the world something positive to talk about in regards to kids your age! These boys are headed for great things, I can feel it.

http://gma.yahoo.com/homecoming-surprise-tennessee-teen-200343676–abc-news-topstories.html

Oh no you didn’t…

I was at a park with hunky hubs, Potato and Oats this past weekend, enjoying the weather and playing with the kids. There was a young couple there who had a daughter about 4, a baby that appeared to be fresh out the oven, and a beautiful dog. I was sitting on a bench watching the kids play when I saw this:

My boys were playing on a slide when the precious girl walked up. At the exact moment Potato started sliding down, the little girl said “hi”. He didn’t hear her, I know he didn’t because I watching. Then my boys ran over to another section of the park to play on the rock climbing wall. The little girl was fine and kept playing with her mom. That should have been that, right?

Well, it wasn’t. The mom started something that should not have been an issue. Like I said, the girl was fine, didn’t mention it at all. Then I hear this conversation (Please note the conversation was started by mom):

Mom: “I’m sorry that little boy chose not to say hi back to you sweetheart”

Girl- “That’s OK”

Mom- “Its not OK. He should have replied. Some parents choose not to teach their kids manners. As long as you are kind, that’s what’s important”.

(At this point the mom keeps looking back at me while she is talking to her daughter and it was clear that she was trying to make a point. I am sitting there, trying to bite my tongue, and giving her my very best stink eye yet trying to smile and kill her with kindness at the same time)

Girl- “Mom, can we go get snow cones after this?”

Mom- “Yes honey. Since you are such a kind and friendly little girl like mommy and daddy taught you to be, we can go get snow cones”

 

I wanted to give that mother a few choice words, but refrained because: A. Potato did not hear any of this so he was not effected and B. The little girl was right by her mother the whole time, and I didn’t want to put more into ear then she had already received and C. given Potatos current situation, I didn’t think it would be wise for him to see me go off on her. Believe me when I tell you really had to hold myself back! What the hell was this mom thinking. The girl was clearly not phased by it at all, but in trying to teach her kid kindness, she was degrading my son and my parenting abilities. So, I have written an open letter to this mom:

 

Dear mom of girl in park,

         I understand that you want to teach your daughter manners and to be a kind girl, but that might get more difficult as you spew such negativity into her young little ears. The best way to teach her these things is to lead by example, but it is obvious that may not be your strong suit. Actions, words, body language and behaviors are something she can and will definatly pick up on. I am so thankful that my son was not close while this was going on, as all of the above things cut deep and can cause real damage to a persons self worth and to do that to a child is simply intolerable as an adult. You should start be displaying some compassion, kindness and love so that those are the traits she picks up on. I see know that you overheard a small talk with my husband, saw a weakness, and pounced. I hope that your “mean girl” tendencies are not passed on, because the world is hard enough for our children. Since I don’t know what you may be going through, I brushed you off and chose to take the high road, but you probably won’t get so lucky with another parent. In the future I would suggest you keep your mouth shut, or take it off the playground and just say it to someone in the face…that would be fun to watch. And for goodness sake, leave the kids alone!

Have a great day,

Me

 

What is with people today? I have encountered many judgmental tones regarding Potato from people who are ignorant to his “issues”, but this had nothing to do with that. It was a hateful woman being a downright poor example for no reason. It was disgusting!

 

-Do not let the behavior of others destroy your inner peace. -Dalai Lama

 

The best I can do, after all…..

In my last post I told you about my son, Potato, having a mental illness. What I did not share is that he is also on the Autism Spectrum, having been diagnosed with Asperger Syndrome years ago. It is important to me that I tell you I DO NOT believe that the two are linked. There is so much out there these days regarding children with Autism being mentally ill. I have to throw out there how strongly I believe that the two are not connected. Just like all kids with a mental illness do not have autism, all kids with autism do not have a mental illness. If you don’t hear anything else I say (write), please hear that!

Along with a diagnosis of Asperger and bipolar, he also has epilepsy, ocular motor apraxia and Agenesis of the Corpus Callosum (ACC) to name a few. Some may be genes, some may tie into the other (ACC can cause ocular issues and epilepsy I have recently learned). I have walked the path of guilt…did I do something during my pregnancy? Have I not been the mother I should be? Have I gotten him all the therapies and specialists he needs? What part might be genetics? Have I truly advocated the best I can for him? The truth is, some of that might be true and some may not, I am certainly no mother of the year, but you know what, I’m okay with that. I have come to realize it does not matter what the cause of any of any of it is. In the end, the cards have been dealt, it is what it is, and the best I can do, after all, is the very best I can do.

None of these things define him though. He is so many things; an animal lover, a hilarious without even trying, a novice break dancer, a collector of all things stuffed, I could go on for days. He is truly special, however I have always been on the fence about the term “special needs”. I use it, don’t get me wrong, but largely because I don’t know what other term to use when trying to explain something or garner some understanding. Is he really special needs, though? Yes, his needs are far different from my other boys, but that could be said for all of them. Potato is indeed special, but again so are my other boys. They all have needs that are special, and though they may be different, no need ranks more special then the other.

Tonight I am celebrating the differences in all my boys, the uniqueness that makes each one perfectly them. Mac with his gentle soul and heart of gold, Oats tough exterior yet loving heart, and Potato with his quirks and sillies. It can be difficult for a mom like me, making sure each kiddo gets exactly what they need from me when they need it, no matter the crisis another might be going through. I would like to believe I am good at making sure each one feels special in their own way, but I am human and I am sure there I times I fail miserably. I do the best I can though, and a wise woman once said (approximately two paragraphs ago) the best I can do, after all, is the very best I can do. When I look at the boys, what they have been through and the strength each of them possesses in one way or another, I cant help but feel that somewhere, at some point in their lives, I did at least one thing right and they know that they are all extremely special; especially to me.

“If love is universal, no one can be left out”. -Deepak Chopra

Stinky Stigmas

The definition of a stigma is a mark of disgrace, a stain..on ones reputation. Aside from the obvious definition of a foul smell, stinky is also defined as mean spirited and nasty. These two words certainly go together.

Stigmas are everywhere, placed on so many people who are different from the “norm”. If you think negatively about something you know absolutely nothing about, you yourself are guilty of placing a stigma on others. At one point or another, we are all guilty of doing this, whether because we are young, we are ignorant, we are close minded, etc.

Stigma and judgment is what led me here. You see, I have an 8 year old child with multiple “special” needs, one of them being a mental illness.  One of todays biggest stigmas is mental illness in children. With all the horrifying stuff going on in the world today, its easy to sit and judge it. The parents are to blame, the school is to blame, gun control is to blame, video games, the list of all these debates goes on. I say that what we need to be focusing on right now is the dire need for help for children mentally. No matter how mild or severe the illness is, help is hard to find, especially for young children.

Do you know how much it costs to get therapy for a child? How much it costs to see a phyciatrist on a regular basis? How much it costs to get acute care for a child in need? Hospitilization? Medications? How much it costs if you should need longer term care? Let me tell you, the cost is astronomical! It is also a full time job, so that doesn’t help when  you have a dual income family. I am blessed, we can afford all these things for my son, but as I sit here in my hotel room 5 hours away from home where my son is hospitalized, I am overwhelmed when I think about what other parents must be going through. It’s a very stressful, draining and heart breaking situation to begin with, but I cannot even imagine what it would be like to have the financial burden on top of it. To think that there are parents out there begging for help for their precious children and being turned away because of lack of funds astounds me, ticks me off, and it makes my heart hurt.

We outcast these kiddos as different, socially awkward, misfits, brats acting out for attention. We choose to keep these kids away from our own so they do not pick up said behaviors, knowing that it’s not contagious. We say “Oh, my child would never…” or “I cannot believe so and so allow their child to….”. Then we sit back, watch the news, and wonder what is going on with kids today. What’s wrong with kids today is that help is not available as it should be to those who need it. My child, who qualifies as a child with an emotional disturbance within the school district, gets 20 minutes a week with a special Ed counselor…20 minutes. In 20 minutes you will hear all about his special interests if your lucky, but you will not hear about his deep seeded issues and if you just happen to get close to that point, times up. Session over. This is because she services all the special ed children in the district (or close to it). Does that not sound crazy to you?  Now imagine that this is the only counseling a child receives because his/her parents can’t afford it or it’s not readily available.

Let’s change this. The resources are out there, they are just not as accessible as they should be. We as a society need to pull together and start talking about this. Mental health checks should be as normal physical health checks. They need to be affordable. The insurance companies need to cover more. We need to be more understanding and less judgmental and the stigma of it all needs to end so parents can openly discuss the need for help. We need to support each other and stop judging each other. We need to reach out. We need to be open and we need to recognize that a child with any special need, whether physical or mental, may be “different” to societies standards, but they are children who are worthy of our love and attention. We need to be asking what we can do to help and we need to be more open to receiving help. We need educate about these issues in an effort to not only aide the children and parents in need, but society as a whole.

We need a change and we need it now. We simply cannot sit around and wait for a better world for our kids, we need to take action and make it happen.

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