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Eastern Massachusetts Fragile X

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My answer to that big question.

I asked a BIG QUESTION yesterday, there were lots of replies so don’t miss the comments if you haven’t already checked them out. I found the replies very interesting, they covered the spectrum from keeping them home and protected to dreaming of a new home for them while keeping them protected. It makes sense, our kids have a spectrum of needs and strengths so clearly their living options will need to cover the spectrum too.

The need to protect, though, cuts deeply into a parent’s thoughts everyday, not just parents of kids with special needs. We fortunate few, who have a child with an innocence that will follow them through their entire lives, may worry a bit extra. Any child can walk out the door in the morning and go to school to be bullied. Most kids have a choice, they can accept it, they can fight back alone or they can seek out help. It’s our jobs to teach them that they have options, to teach them the strength they need to protect themselves in the world when we’re gone.

My child has no choice. He cannot seek help. If the bullying is subtle (and haven’t we all met that person who can make you feel badly about yourself while smiling and putting on a friendly face to the rest of the world?) it could go unnoticed for…ever. Caleb cannot tell me if someone is hurting his feelings or hurting him physically. I rely on my gut instincts and on the people who are caring for him when I am not there to watch over him vigilantly. Sometimes its the people we are trusting to care for our kids that are harming them, sometimes they’re so overworked that they just don’t see it happening.

So, in my case, fear plays a very large roll in how I will answer this question. That is just awful…knowing that statistically my child is likely to be a victim during his lifetime because of his special needs…knowing that I won’t always be there to stop it…knowing that some day he will be alone in this world without a mother & father who would do anything for him. Since Caleb’s diagnosis until the moment I take my last breath I will have this fear constantly eating away at me.

Unless.

Unless we make big plans for this child. When Caleb was diagnosed I thought we were saying goodbye to a lot of things. College, marriage, grandkids, retirement…just to name a few. I’ve come a long way since then.

I want Caleb to be college educated. I want Caleb to be able to wash his own dishes & clothes, cook meals for himself and others, to have friends. I want Caleb to get paid a living wage to do a job that he enjoys. I want Caleb to have health care. I want Caleb to feel safe, loved and important. THAT is what I want Caleb’s adult life to be. It’s probably not very different from what all parents want for their kids but it’s a massive undertaking for our family. This won’t just happen because we expect it of him or because we want it for him. We will have to make it happen. It will take time, perseverance and money but it’s not out of reach.

The details of what his adult life will look like are less important to me right now. A few years ago college looked impossible but today there are programs springing up around the country allowing kids with special needs to enjoy the independence and fun of college while becoming life long learners. I refuse to write off any possibilities for him because I cannot see into the future. Will there be marriage in his future? I don’t know, I want him to find love…if he does find that love, I won’t let anyone stand in the way of him being allowed to get married if that’s his choice.

What I don’t want is for Caleb to be apart from life. I want him to be one part of a diverse community. And I want him safe. Right now I picture a combination of the real world and a world of his own. A place to live that is safe, people to watch over him when we cannot and a life out in that big, bad scary world…just like all the other kids. We all have to take risks, we all stumble and we all hurt at some point in our lives…it’s what makes the joyous and happy times so much…more.

So, as scary as it is, as choking as that fear can be, I know that the only way Caleb can live the type of life I want for him is for me to be willing to take those risks. If I want a normal life for him, I need to take normal risks for him…and allow him to take the normal risks himself.