“We may not be able to prepare the future for our children, but we can at least prepare our children for the future.” F.D.R.
Franklin D. Roosevelt said it best. I couldn’t agree more. Our children are the future of not just in this country, but the world. Parents prepare their children for their future with things like school, advice and general life skills. Then when our children get old enough they go off to college, the workforce and other things, whether they leave home and go miles away or stay nearby. Children grow up to be adults and the process starts again when they have children of their own. Parents like me on the other hand prepare our children for the future and our children, the 1 in 88, need more of a future.
I have no problem saying I am selfish. I am a stay at home mom and I am constantly around my son. I tend to enjoy the little freedoms and get selfish with them. I am selfish with my sleep because I don’t get the sleep of regular parents, so I take advantage of it as much as possible. I enjoy going out to dinner with my husband as much as possible even if it is only once every other month and we take that extra 5 minutes before we leave to just enjoy the peace and quiet. I enjoy watching a TV show without being interrupted multiple times. I am selfish with my free time, I have no problem leaving the Monster at home with Mike. If Mike is home and isn’t busy I will not take the Monster to the store 99% of time. I love my son to pieces! He is amazing, but I need that time away and I am selfish with it. I have learned to be selfish with myself because I need it. Every mom does, but those of us who have children on the spectrum understands this different kind of selfishness. But most importantly, the one thing I am most selfish with is my son.
He is autistic, he is non verbal and when he was diagnosed with autism he was also diagnosed with receptive/expressive communication disorder. Even though he didn’t get the diagnosis of sensory processing, he does have sensory issues. We did not ask for our son to have autism. And I have said this before autism sucks! My son is wonderful. Just like any other parents Mike and I are preparing our son for the future. The best way we can. We started therapy as soon as possible at just over 18 months old. We got in as soon as possible to Riley Children’s Hospital (took us almost a year) and we got our diagnosis. So what does the future hold for him?
Well he is part of the children right? It seems that 1 in 88 gets forgotten about when it comes to the future and contributing. I think because children with autism become adults with autism so maybe they don’t “offer” as much as some other children. Some people have hope and some don’t. Parents of autistic children always have hope. Hope for them to talk, to be potty trained, to grow up and have a job. These things are always possible, but they aren’t possible if we don’t take advantage of the things that we can and be selfish with those things.
My son has a future, it might not be the future that I wanted when I was pregnant with him, but his future is more than anyone could ever hope for and his future is just as important than any other child. Special needs programs, Medicaid waiver, handicap parking permit and disability are things that he doesn’t just deserve, but needs. I feel that every child that is struggling on the spectrum deserves somethings to help him/her be the best that they can be. When we got the diagnosis these were the things that the doctor told us. He explained how he should and eventually will get these things. He deserves these things. Do we have insurance? Yes, but we want more. Why? Because I am selfish. I am selfish with my son. I am selfish with what he deserves and is entitled to. It will take a LONG time (literally years) for the Monster to get a medical waiver. Until then he will get a Government assisted special needs insurance to help with coverage of many things. Do we need this? Yes, because it is less money that we spend that can be put into something else for him. Do I feel bad? Nope.
I am a stay at home mom and with only sleeping 4 hours on average each night. I don’t think I could handle going back to work. I am busy enough with the Monster and I also have the question who would watch him? We do therapy 2 x’s a weeks and we try to keep a “normal” schedule. So for now I rely on government therapy until he starts school (in March) and then we will look outside of that for more therapy after we get everything filled out and ready to go. Then I will most likely have to battle our insurance additional therapy. It seems a lot of parents have to, but we do it. Why? Because we have a future and he is apart of it. Just like your child.
I wish we could afford things like a private therapist that works with our son. We are not in that position just like some (let us be realistic MOST) of us are not able to afford out of the pocket that type of therapy. If I could afford it I would! I am however selfish and I will take all the help we can get for our son. I will take advantage of it all. Why? Because my son deserves it. He is entitled to it. And so is yours!
More kids will be diagnosed with autism this year than diabetes, cancer and aids COMBINED! Yet!The funding for autism is significantly lower than those. I am all for research, I think money needs to go to research on what causes autism and a possible cure to reduce the numbers of 1 in 88. As a parent of an autistic child I am worried about how to help him NOW! After the diagnosis. After he gets done with school. There are things he needs.
Things like a handicap parking permit and I will use it. He will soon be too big to carry and I will park in a handicap spot when he is with me. He has already tried to bolt from me in the parking lot of our local Wal-Mart and grocery store. He sees no danger and using it to my advantage to protect my son is what is important. Will I use it all the time? No, but I will use it when I need it. Walking half way across the parking lot and if it is busy that day. Then I will use when needed.
Medical waiver, we will be put on the waiting list and I don’t feel bad for when he gets it. Different special needs programs and after school programs for children with disabilities he will hopefully be offered a few of these things and I will use them. Some programs I will start to look for that will hopefully offer even more services and different types of services that he will receive. These are tax dollars doing what they are supposed to do and what I feel doing what is best.
I am not cheating the system. The system is already messed up, but if you start to cut the system in the wrong ways, people like my son gets cheated to the services and things he needs. People cheat the system to get what they want for free or at a lesser price to help themselves. I am gonna use it to my advantage for my son. I am going to help him become something that he might not if we didn’t have these things available. And I might have that 1 out of a billion that says, “I don’t feel like supporting your kid.” Tax dollars isn’t supporting him. My husband works and pays taxes himself. These programs, disability and medical insurance is things he is entitled to. Nobody asked him to have autism, he was simply made that way. And he shouldn’t suffer because of his autism.
We are helping him become part of that future. Not the 1 in 88, but the 1 in millions. Maybe even the next Mozart, Picasso, (Mozart and Picasso have both been suspected to be on the spectrum), Satoshi Tajiri (I doubt ppl will know him, he created Pokemon!) or Temple Grandin. He is part of that future. The future of hope.
Night of Too Many Stars “Firework” Katy Perry and Jodi DiPiazza