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Do you ever wonder what parents of children with autism go through with their school districts?

Well let me explain it in another way:

Your child was diagnosed with leukemia, but you’re fortunate to get the best care. You were directed to one of the specialists for pediatric cancer at Cincinnati Children’s Hospital, the top ranked pediatric cancer specialist in the country. And you were sent there by a group of parents with children on their way to full recovery.

Not only is this hospital and specialist #1, but your child has amazing progress, and responded extremely well to the treatment plan. The quality of care and expertise is top-notch. And there is a reason why this doctor has such a high success rate of patient recovery.

Your child is doing well and everyone is extremely happy because you see the light at the end of the tunnel and the promise of full recovery. Your child has a bright future.

But then, you have to move across the country. But hang on, there’s no reason for panic because your superstar doctor is willing to work with the hospital and local doctor in the county your moving too. He will consult and be part of your team to ensure your child continues to make a full recovery.

Now remember these parents have also done some homework they’ve contacted the local hospital and doctors and on initial consult the local doctors and hospital staff have indicated they’d be willing to work with your specialist who knows way more than them. And considering you’ll be flying out the superstar doctor periodically to meet with them and for your specialist to observe your child’s progress, everyone’s happy.

Except after you’ve moved across the country and your child goes in for their first consult and checkup the local doctor decides to change the treatment plan without any consult to you or the leading pediatric cancer specialist who heads up your team from Cincinnati. In fact they become arrogant in the fact there can’t be other specialists outside their county their district that knows better than them. They’re minds are closed, apparently they never heard a word you said, and you discover they’ve been saying one thing but doing another. They’ve not done their research in fact all the information and research provided to them by your specialist they decided to ignore and shove in a drawer. And then suddenly they’re unwilling to work with you or your specialist.

And for the first time ever you as the parent are not allowed in the room, and you’re kept on the other side of the door wondering what’s going on. And then your child starts to regress, and so you contact your pediatric specialist in Cincinnati, who also voices his concern and in fact makes a trip out to visit this doctor, all on your dime.

When he arrives the local doctor even the hospital welcome the specialist, they even sit and listen. They nod they agree, paying lip service. Then as soon as he leaves they go back to what they were doing. Again not consulting you. Your child becomes ill. The local doctor maybe puts a political spin on what was originally discussed, leaving you doing the “W.T.F.”

So you become one angry assertive parent and start demanding answers, pounding on their door. And your suddenly labelled, “the problem parent” and told to go away.

Confrontations happen, your criticized, maybe told you’re a horrible parent and then your told if you don’t like what they’re doing go somewhere else because , “they” the local specialists are highly skilled and they’re using their own expertise. And then they become silent, ignore your calls, your emails. Even though your treatment plan has a proven track record and your child was well on his/her way to full recovery. What this doctor and local hospital staff did in such a short time, undid all your child’s progress.

So you’ve lost sleep, your stress is through the roof. Maybe your marriage has split up now, and you’re almost out of money. Your insurance won’t cover a trip back to Cincinnati, because the funding cut off has already passed for the year. And this doctor and local hospital are now sitting on the money you need to pay for your child’s medical. Everyone you talk to sympathises with your plight but they really don’t understand because they don’t have a child who is sick. And because your only one voice, your feeling alone and that the door has now closed to you.

This is an extreme comparison and hopefully this helps you understand what is at stake for many autistic children, and their families and the stress that exists with many of the families in dealing with their school districts today. Many autistic children are not even allowed to go to school in the public system. And there are parent groups advocating and doing presentations over and over again to their local school districts. For many parent who are dealing with the “really bad scenario” unfortunately are left with options which may not be viable for them, hire a lawyer, move,  or try to make the best of a really bad situation. The final straw, which many are choosing as of late and for this coming school year are home school. But for the working parent home schooling isn’t an option. And children with autism need the social interaction with typical children under the direction of a skilled private consultant who has a proven track record. This is not an extra cost for school districts because the parent is footing the bill. In theory this should be a win win situation.

What you need to be aware of as you’re coming into another year of school:

  • Funding is different for every district, and generally the cut off is September 30 for the money your school receives to support your autistic child. In some areas this dollar amount is substantial. But you need to check this out yourself because it may differ in your area. *Also word of caution some school professionals may not disclose the correct facts.*Do your own homework, and talk to parents who are running a genuine home program with a qualified consultant.  You need to have decided and enrolled your child, home school, or other program before this cut-off date, or your school district gets the funding allotted for your child. And that money you need for the coming year to pay for a support worker. Also this money is given directly to the school your child is enrolled and it is entirely up to the principal of the school how that money is used. *Again do your homework, as policies may be different in your area.
  • To avoid another lost year for your child. Start meeting with the superintendent or head of your district now, before school starts. If they won’t give your child a guarantee that they’ll work with your consultant and allow your own support worker in the school to work with your child, look at other options. New schools, private school, home…etc.  Don’t wait, because after the funding cut off you’ll have no options for the year, except spending your life savings, adding stress into your family that you don’t need, and watching as your child regresses even more.
  • Make sure your school is willing to integrate the specialized training required from your consultant.
  • It’s really important to be aware that many school districts have assembled their own “team of experts” surprisingly, you should be aware many of the experts are little more than district personnel, teachers, vice principals, psychologists, etc. and they do not have the specialized expertise to plan your child’s program. The plan for your child’s program and the implementation must come under the direction of your own private consultant.

In the short story I wrote A Baby And A Wedding which is the sequel to The Forgotten Child. Trevor the little boy with Autism started school, but it was a new school, a forward thinking school started by the parents in the community, for all children. This private school pulled away from the current public education system and is solely based on teaching in the 21st century. You may notice there are new innovative schools popping up recently that are based on teaching in the 21st century, teaching the whole child, developing personal learning plans, not the one size fits all model.

It’s imperative that parents start coming together to support not just the typical child, but all children and their unique needs. When many voices come together, is when change truly happens.