There are Things

As horribly as he is coping to all the changes in his life, I cannot honestly say that I am doing much better. I really thought that we were getting a handle on it all in the past year. It seemed as though we were starting to settle into routines, having a bit of normalcy or at least a sense of it. Now that school has started, for lack of a better term, there is a whole lot of crazy in our lives right now. Every single time, without fail, we start to see a bit of progress there is a tsunami that comes and just washes it all out to sea.

New things are setting him off. The collar of his jacket, it's choking him. His eczema in in full swing, so him bum is a rather large scab of sorts. It's the end of the world if you walk out/through a door without sticking your tongue out at him. Chores as simple as wiping up the juice that dribbled on the floor take hours because he swears that the spot on the wall is talking to him. Homework assignments are almost a no go, as he gets so frustrated when his letters don't turn out the way he sees them in his head.

Things I thought that we were past are setting him off. His brother sat too close to him on the floor to watch a movie. A friend bumped into him while playing football. Bed wetting.  Running naked through the house because his clothes are too itchy or tight.

I am cautiously optimistic that the path we are on now, might be another piece to the puzzle...we seem to accumulated a lot of pieces, but none of them fit together at all. I feel like we are putting together a puzzle that is literally just cardboard...no picture to reference, no illustration on the pieces...trying to cram it all together until they kind of fit before time runs out. Any success that we have...I fear pushing for more. I am afraid that it's all going to come crashing down without provocation.

I am terrified that these struggles are not only hurting him, but that they are hurting the other kids. As though as he is, his older brother is that much more sensitive. His sister has her own struggles academically that she pushes really hard to overcome. And his little brother, I am scared that he is going to think that all of this is normal. I am scared that they feel like they are in a damaged home...and I mean more than the holes in the wall from him throwing something, I mean all the anger, the battles over nothing, the different sets of rules for him and them, the exhaustion, the attention missing because it cannot honestly always be afforded to them, and the feeling that I don't love them as much.

We are trying to cope with our new normal. I am working 11 hours a day away from home so we can afford insurance to cover the buffet of services, therapy and drugs (that he will need) that the state does not pay for. I no longer spend time with friends away from my home, because I am ushering him around to 2 different therapy sessions a week (could be more soon) at $50 bucks a visit. I come home to housework and a husband either running out the door for his job or heading for a catnap. Either way...when I am home, I am the biggest target of his rage, frustration, and discomfort. I am the first person he screams at even when I have just walked in the door. I am the first person he hits when he gets frustrated with a task whether I asked him to complete it or someone else did. I am the first person he spits on because his food tastes weird on his tongue. On the other hand I am the first person to get a "hug" when he is sad. I am the first person he asks to put his cream on when things get too irritating. Mine is the first bed he visits when his pillow sounds too loud like the ocean.

Since we started seeing the new Therapy Group we have learned a lot. He fits in a lot of boxes such as... Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS), Attention Deficit Disorder (ADD/ADHD), Sensory Processing Disorder, and Bipolar. We have been through 5 weeks of rigorous testing with him. Justin and I have answered 70 pages worth of Scan tron Sheets of questions (I never want to have to distinguish between Always, Usually, Often, Sometimes, Occasionally  or Never...ever again). His teacher had an additional package to fill out, though not as lengthy as ours. Next week I have a 4 hour interview with his psychologist in which I need to tell her when he reached certain milestones and at what points we started noticing problems. Hopefully over the course of the next few weeks (fingers crossed) we will have some definitive answers and be able to start working towards some permanent solutions.


Until we have those answers, there are things that you never ever in a million years want to think about, and we have to start thinking about some of these things and it is hard.

What kind of life do I want for my son?
How far am I willing to go to get him treatment? Drugs, Therapy, In Home Care, Outpatient Therapy, Committal?
How much of that can we afford?
How is he effecting the other kids?
How many bridges will we burn to get him what he needs?
Is there a permanent solution for this?
At what point would we stop seeking treatment? How far are we willing to push?
What life will he lead as an adult?
If something were to happen tomorrow, in 5, 10, 20, or 30 years how would he be taken care of?

Yet through all of this, people still ask...would you do it all again? If you could change 1 thing about him, what would it be? what were you thinking having that many kids? What made him this way? To those questions, I always answer:

I would do it all over again in a heartbeat.

The only wish I have for him is to have the opportunity to experience happiness in his own skin. In my mind all I see, even through all of this, is a loving little boy. I still see this when all you see is a manic little demon running naked past my living room window. I still see that loving boy when he is kicking and screaming and hitting me. I see this because I know he doesn't want this anymore than I want it for him. I see this because I haven't walked away since it stopped being rainbows and kittens. I still see my baby boy who couldn't quite get comfortable in a Boppy that still managed to look up and smile at me.

I was thinking that my family had a lot of love to give. He may test my patience every single moment of every single day, but I still love him. Yes, I beg for answers. Yes, I beg for things to get better. But no matter what I love him, and I make sure every single day that I see him that he knows that and I will continue to do that until my days are over. There are a lot of kids who don't have these challenges that don't get half the love that he does. He was lucky to be born into our family, and though they might not always feel this way...his siblings are lucky to have him around to teach them compassion and see unbiased love. We still have a lot of love to give

Genetics made him this way. Cracks in the system exasperated the situation. There isn't anything that we could have done differently while he was in the womb, or when he was an infant,toddler or otherwise. He was born this way.

No matter how well intentional...you should know...those questions hurt. How could you think that I would want to change my child...the hand we were dealt...who hasn't wished for a different hand...but how dare you question my love for my child, the size of my family, or accuse me of doing something in a round about kind of way. Those are the bridges that I am willing to burn.

As a special needs parent...I don't want anything different for my child than you do. I have made mistakes, I could use a little extra patience, a little extra joy...but I have learned to do infinitely more with what I do have, and I will keep pushing until he has more, because he deserves it. They all deserve it.