Hope

Its not really funny. Not this time. Not even in retrospect. I had started out wanting to keep a blog on the light side. I wanted to remind myself, more than anyone else, that I can always find humor in unlikely places. But not right now. Not about this.

Having a special needs child is like fighting the battle of a lifetime. I know its all been said before and people love referencing the Welcome to Holland poem etcetera. That has its place, I'm not saying it doesn't. And yes, there is peace in acceptance. I get that too. But that path to acceptance is a long, tough road. There are a lot of points at which a parent has to accept more, and then more and more and more. It doesn't really end. This path of acceptance just keeps hurling itself at you.

Here is the thing. Its not just about the acceptance. Its about the entire damn journey. The journey that never really gets to a point at which you can stop and catch your breath.

A friend with an older child with some physical and developmental issues was recently talking about speaking with another woman who had just found out her child would face a lifetime of delays ( social, emotional, physical, developmental). All of us in the room, all mothers of a special needs child of one sort or another, nodded knowingly. We remembered this pain, that initial shock. But this woman, she had it worse, because she knew older children with the same issues, she had seen everything that was involved in caring for a child like this. My friend commented that she did not know how strong she would have been if she had known and seen what the future would hold for her child and her own life.

That is what this post is about. Its about that hope. The hope you need to continue. The hope you need to fight for your child against all odds. Yes, I know the likelihood is slim that my child will be the one, the one in 40 billion, that somehow makes it out of "special needs". Maybe my child will be the one who is somehow OK in life. Maybe he will have a friend. Maybe he will have a job. Yes, I know those goals are set high. I need to keep those goals set high. If I give up on my child then no one believes in my child. If I don't believe in my child he has no one. I have to believe in my child. Thats my job. Hope is what keeps me going. Hope propels me forward each day. Hope gives me the strength to tell teachers " Yes, my boy deserves a chance to do his work. Please let him try". Hope is what gives me the strength to keep searching for new ways of understanding my child and how he thinks. Hope compels me to seek out alternative methods of teaching so I can help him access education.

For some reason people want to rob me of that hope. For some reason people see hope as a weakness of mine. Apparently I need to accept all of the many things my child will never be. Somehow well meaning friends cannot see that I need that hope to get through each day. Yes, I know there are many things my child will never be. He has everything stacked against him. Yes, I know that. I do not need information on adult living homes. Not right now. Because I have not given up. If I was looking into the various options available that would be helpful. I am not looking into that right now because he is 8 years old and I have not given up.

I am not being unrealistic. The fact is my child is a child. He has growing and learning to do. He has shown that he is capable of growing and learning. I would like to see how far he can go before I make the decisions that will affect the rest of his life. I would like him to access education and social skills and everything else that is available to him in the least restrictive environment possible. Does that phrasing sound familiar? Thats because its a law. Right now my focus needs to be about giving him the tools he needs to succeed at whatever level he might succeed. Thats it. Thats all I want. I can't focus right now on whether or not he will go live in a home, unable to care for himself, friendless.

I don't really understand why well meaning friends need to point out the joys of being rid of this burden of mine. I understand that your cousin, or brother or dog walker's friend, knew someone who was institutionalized and after that happened everyone was so happy because the house was so calm and the rest of the family had a nice peaceful life. Thats just great for your dog walker's friend's cousin or whoever the hell you claim to be referencing, but I am not that person. Sure, maybe he will end up like that. I said it, are you happy? Now will you leave me alone with my pathetic hope?

I understand that people find my hope aggravating. They want to tear it down, make sure I know that my child will never have a " normal" life. But nonetheless, I am clinging to my hope, pathetic as it may be. Because my hope is all my child has and I am not going to let him down. I am the one person who believes in him. Every child needs to know someone believes in them. Every child. I see how funny and smart ( yes, smart) my child is, I know he is capable of a lot. I know how hard he works and tries. No, I will not give up. I am not interested in hearing about all the ways you think he will fail or the many ways in which you think he cannot handle daily life. I am not blind to any of this. Of course I see the struggles and pitfalls. I do know I have chosen a challenging path for my child. But if I chose the easy path he has no chance to rise to the occasion ( you know, just like any kid). I think he can do it.

I've been down this road before, back in the days when no one believed me when I expressed fears that maybe something was wrong with my child. Friends wrote me off as being neurotic. Doctors told me not to worry, like I was some crazy, bored Munchhausen by proxy mom. I paid for private evaluations and guess who was right? That would be me. Is there satisfaction in that? Not particularly. Looking back on that time, the one regret I do not have is listening to myself and getting the help we needed. So many parents of children with special needs are consumed with guilt for not knowing soon enough, not having early intervention. I don't have that guilt, I know how hard I tried.

Now here I am again. Fighting to have my child viewed as a child first, not a disability. No, I don't want anyone's opinions about how I need to let go and realize that he can't do these things (like participate). Because maybe he can. I'm certain I won't look back and regret having fought so hard. Even if all of my greatest fears are realized and an awful, sad, lonely life awaits him, I will not regret having fought to give him a chance.

Hope is the source of my strength and I am not letting go.