Two blogs in one day! I have not yet posted much about my oldest son, Clayton, as since I have started the blog he has not been with me. His father and I are divorced and he is with his dad 3 out of 4 days during the week, with this past week being much longer due to my school schedule.
So - as I was going through my photos and came across this, I just had to post.
This photo shows Clay's personality so well (we bought those 'sunglasses' in Chicago on this day, he insisted on wearing them all day, everyday for about a week!). He is so full of life yet goofy, and cuddly and loving all at the same time. He goes about his life so carefree. He doesn't care what others think of him and he takes time to enjoy life so much. He is my true inspiration!
Clay is not only my inspiration becasue of his personality, but, because he has to overcome many obstacles everyday. Clayton has been poked and prodded since he was just under the age of 2 (he got to the point of crying ANYTIME he seen ANYONE in a white coat). Why? Becasue after his first word, 'mama' and 'Cak-er' (cracker) he stopped talking. He also drolled heavily and gagged on baby food. He didn't walk until he was 14 months old and was EXTREMELY strong (he was doing chin-ups at the kitchen table long before he could walk).
He has been in Speech, Occupational, and Physical Therapy since the age of 2 and has been in the community school districts special education program since he was 3. He has had more medical tests, blood draws, and specialists visits in his short life than normal people have in a lifetime.
We have been down the road of Autism, Aspergers, and Mental Retardation...just to name a few. After 6 long and agonizing years we finally got the official diagnosis by insisting on an MRI and CT scan at the University of Iowa through the neurology department. Let me first state that as a mother, you KNOW when there is something not right with your child. His pediatrician kept telling me to wait until he is 2 or, he is just developing a little slower. Well....I went above and beyond and contacted specialists myself. He got to the UIHC and to thearpy WITHOUT any referrals from his doc. Why? Because I demanded it and advocated for my child.
So, the diagnosis: Worster Drought Syndrome. (http://www.specialeducationalneeds.co.uk/worster-drought-syndrome-wds-2.html)
I found this out when the neurologist informed me my son had a cyst on his brain between the two hemispheres which impaired the fibers connecting our two hemispheres from connecting in that specific location. He will live with this cyst forever - would do more harm than good to remove it, and it should not grow. He has been hospitalized once for a seisure that is suspected from this cyst. When I found him unresponsive in his room, it was the scariest day of my life. When they say you can lift a car off your child with pur adrenaline, they were not joking. I scooped him up (deadweight and all), buckled him in the car and speed to the ER. We were not put in the waiting room, we were rushed back to a room and a crash cart was brought in. I wish this on NO parent!
We also discovered (at UIHC appointment) that he has WDS because his father and I passed both carried a recessive gene to the disorder. Talk about guilt!
Worster Drought is also known as 'Congential Suprabulbar Paresis'. WDS is a rare form, but recoqnized, form of Cerebral Palsy which affects the bulbar muscles. It causes problems with a child's mouth and tounge. Clay is unable to lateralize his tongue, so, communication is very difficult. I can have a much clearer and understandable conversation with my 4-year old than I can with my 10-year old. Those who are not close with Clay, may not understand him at all.
The symptoms are feeding difficulties (remember he used to gag when eating), toungue movements (unable to lateralize or stick out far in Clay's case), Arm and leg incoordination (he received occupational therapy due to lack of coordination and fine motor skills), Severe speech delays and persistent drooling (he had to wear a bib, and I had to change it twice a day, until he was 3 due to drooling). These are just the symptoms Clay has - there are more.
Children with WDS often have learning difficulties, emotional difficulties, and behavioral difficulties (all of which Clay has). They can also be diagnosed with Dyspraxia (hard to carry out smooth and coordinated movements, Clay has this as well although to a unnoticable degree). Kids with WDS can also have ADHD (yep, Clay has it).
Clay is on a cocktail of medications that help to control his hyperactivity, behavior, and emotional issues that I wish he didn't have to take. We have considered taking him off medicine, but, that is a disservice to him. He can't focus and tends to get in trouble at school and peers avoid him because of his behavior. Hopefully, one day, we can limit the medication by other methods that have yet to be discovered.
If you were to cross Clay on the street, you would not think anything of him. He looks like any other ordinary child. You would not know there was anything different with him, unless and until you tried to talk to him. Due to his anxiety he tends to have a few ticks that rotate from time to time. He will play with his fingers rapidly and when he gets excited while playing he will yell over and over. He absolutely HATES the feel of jeans and some other forms of fabric on his skin (tags must be removed) and will only wear a certain type of pant. He hears every sound going on in a single area as though it is the dominate sound in the situation.
Imagine for a moment, you are having coffee with a friend at a coffee shop and you are conversing. You occassionally get distracted by the sound of the coffee machine, door opening, or someone droping a spoon. You may also overhear the soft whispers of conversation around you. All the while you are not paying attention to the feel of your clothes or texture of the table in which you are resting your hands.
You are focused on your friend and everything else is just happening in the background.
Now, let's take a look at it from Clayton's perspective. That coffee pot that is brewing coffee is so loud it hurts his ears. The door that rings everytime a customer comes in pierces his ears. The multiple conversations are like screaming matches in his head. The spoon that fell, will be so loud he may jump. The clothes on his body, he feels every fiber and he hates it. That texture on the table - it irritates him under his arms. All of this - ALL of it is going on at the same exact time while he is trying to focus on his friends conversation. This would make ANYONE anxious and irritable. I can only imagine what goes on in his head daily.
He inspires me to never give up and to keep going. If he can make it through every day with all he has to endure appearing as though he is a normal functioning member of society (meaning no one can tell he is going through this) tells me that I can handle anything. I do not have the difficulties he has (although I would take them in a moment if I knew it would 'cure' him). Whenever a struggle comes my way, I think of Clay and how he has to struggle every moment of every day. I pull up my big girl panties and trudge forward not allowing myself to give-up. Why? Becasue my son CAN'T give up, he doesn't have the option...this is his life.
Although his father and I are divorced, we co-parent very well and advocate for our child. We are involved in school and have set-up resources for him to assist in his education. We do not allow him to use his disability as a crutch. He has to try and order his own food at a restaurant, even if that means pointing to the item. When someone says hi to him that he knows, instead of shying and hiding behind one of us, we make him say respond. This may seem cruel but social skills are hugely affected with WDS.
I concern myself with bullying and how I will handle it when he enters middle school. Right now, he is very popular and the kids love to be around him. Like I said, he radiates positive energy and is full of life and fun to be around. However, his mentality and speech are behind his peers, eventually I am afraid they will move on and Clay will be a target for bullies. I stand before all of you readers and confirm to you that if anyone bullies my son, I will NOT turn a blind eye. I will be at that school, location, parents house, whatever...the moment I find out it is happening.
Clay is very intune with my emotions. He knows when I am sad without me even showing the emotion. He is the first to ask me if I am okay and offer a hug and kiss if he senses I am out of sorts. I will do everything in my power to protect him from the ways of the world.
There are days it is difficult. There are days I have had to call his dad because I needed a break. There are days I cry and ask God why Clay was born with this condition. In the end, Clay has a purpose. It may be to teach me patience (patience is NOT my forte). It may be to show others how you can continue to be positive and enjoy life despite the obstacles in your path. It may very well be becasue the Lord KNEW Clay was strong enough to carry this life and be an inspiration to others. For me, he has achieved that.
No one can tell us if or when he will improve. I may never have a clear conversation with my son. If I don't understand something, he will draw it (he has become quite the artist). What I do know is that my son has the biggest heart, a heroic soul, and is one of the most loving, full of life kids I have ever met (and I am not being biased).
So, the next time you see a child throwing a tantrum at a store, restaurant, or movie theatre and you are annoyed or curse under your breath sayin 'can't she handle her child' or your child points and asks you why that person is different, or you see a stressed parent who looks like they are exhausted and defeated. Don't walk away! Don't judge! You never know what their life entails. Just becasue everyone 'looks' normal does not mean that they are. It does not mean they don't have an abundance of struggles they face every day. It does not mean that parent can't handle their child, it may simply mean she chose her battle and let him win because it was the better of two evil. It could also mean that she is just exhausted...exhausted at constantly medicating her child and trying to keep him in line 100% of the time to appease those around her. The day that child has an outburst during the plot of your movie or throws a tantrum while you are trying to enjoy your date....just think, maybe it was that day she decided to let her child be A CHILD, to be himself...without medication or without constantly being disciplined and put in line. That day could be the one day that child is experiencing freedom from the vices that limit his true self.
Clay, you are a true inspiration. Don't let anyone ever tell you differently. Remember I will never judge you for anything. You can talk to me about anything, you may disagree with my reaction but I am your mother and have your best interest at heart. Your home is a safe haven, a place for you to be yourself and unlock the chains you struggle with. If someone ever hurts you physically or by words....look them in the eye and smile. Show them your love for life the WAY YOU ARE. If you are hit first for something you did not initiate, you have my permission to hit back. Protect yourself, but, you better come home with a damn good reason on why you had to react in such a manner. I won't judge you or discipline you for defending yourself or your family, but, I never want to hear of you being the initiater. Also, just because I think it is okay for you to hit back - please remember, it is the last resort.
I am proud of you buddy!
Love you,
Mom
Joyfully,
Their Mom
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