There’s a great video by Elizabeth Aquino that shows parents of special needs kids giving advice to themselves the day they got the diagnosis. The parents hold up a piece of paper with the advice written on it.

The video made me cry. I want to tell you to watch the video, but I’m not sure if it made me cry only because I’m the mom of a special needs kid. Anyway, here’s the video.

The thing about the day you get the diagnosis is that you already knew something was wrong. You just didn’t know how bad.

The first hint that I knew things were bad is that raising our son was so, so, so hard, and we couldn’t believe that people did this for three and four kids at once. “How do people have more kids?” we would ask. “How is it possible?”

Then my sixteen-month-old son was starving to death. Literally. The doctor told me I had to start force feeding oil and butter to get calories into  my son.

I went home and did nothing.

The doctor called me back into his office the next day. Because he knew that parents cannot comprehend terrible news about their kids. Parents are slow to process. He knew I would do nothing.

My son qualified for forty hours a week of state-funded services for special needs children, including feeding therapy. I couldn’t believe it.

That was six months before my son actually got the diagnosis of Aspergers. By that time I was in constant disbelief that this was my life.

Kids with special needs get individualized education plans (IEP). I looked around and noticed a very wide range of IEPs for kids with a very narrow range of special needs: the sign of a corrupt system.

Schools enforce IEPs very loosely unless there are lawyers around.

It was clear to me that the only way to get an IEP that gave my son everything he was legally entitled to was to fight for it. And it was clear that even after he had a great IEP, the schools cut corners with enforcing it. Not because teachers are bad or administrators are dishonest, but because there’s simply not enough money.

So by the time my son was in first grade, I had hired a lawyer to fight New York City social services, and I won. And I had hired a lawyer to fight Madison WI public schools and I won.

About a year later, when it was clear that I would need to sue the schools again, I gave up. And here’s why.

The public school system is under the legal obligation to give an appropriate education to all kids. But it’s too expensive. The public schools simply don’t have the money. I could sue the school district every year to get nearly a million dollars in extra services for him. Because it’s his legal right to get them. But the school can cut corners every time. There is no way to enforce that they give my son what they say they will give him unless I take them to court.

When I won the argument that he did not receive the services he’s legally entitled to in the Darlington WI schools, then I had to fight for how they will make it up to him. And who would deliver the services. And by the time I’m done arguing that, it’s the next year.

Giving your child what is legally mandated is too expensive for your child’s school.

And here’s the bottom line: It’s cheaper for the school district to fight one or two parents in court than it is to give in on all the services. Unless there is a huge number of parents who will take the school to court, court is cheaper than giving kids what they are due. (It’s no coincidence that places with great services have very wealthy parents who can hire lawyers: NYC; Newton, MA; Bellevue, WA.)

And I can’t really blame the schools. The people who make the laws about what schools need to provide are not the people who have to balance the school budget.

And, if you’re reading this blog you are probably thinking that no kids receive an appropriate—this is the legal term—education in public school, so why should special needs kids get all the money? It’s a decent question.

One that I couldn’t answer.

It’s more cost effective to pay for services out of pocket than fight for them in schools.

So I stopped fighting for services to make public school good for my son. I gave up all the free benefits he qualified for because he’s special needs in public schools. And instead I paid for everything out of pocket.

It’s working out so much better. Now I can focus on figuring out what my son really needs instead of what my son qualifies for. I can spend my time earning money instead of navigating public school IEPs. And I can figure out how to pay for services rather than how to pay for lawyers.

The problem that comes with having a special needs kid is actually the problem of just re-imagining what your family is, so you can make a family where everyone is growing and feels loved and supported. And you don’t need to spend time in the schools to make that happen.

 

 

15 replies
  1. Lynn Lawrence
    Lynn Lawrence says:

    My son has learning strengths and weaknesses. We got diagnosed backwards into the high-functioning autism spectrum: Social skills issues flagged, graphomotor weakness PT needed, prosody issues: Speech therapy needed etc. etc.

    We tried to use schools, but the work to support our son in school was often well beyond the work to homeschool. Also, a change from a geographic area that is famous for its perfectionism to a place that is less so helped a lot.

    So did time…maturity made a big difference.

    We made mistakes in our homeschool. But one mistake we did not make was to allow our son to suffer for who he is…or to allow we the parents to suffer seeing him in an unenriching or unsupportive environment. That was the litmus of whether to homeschool or try something else.

    It’s amazing how well parents can teach their children simply because they know them so well. For example, I am no math teacher, but I invented a truly visual method for teaching multiplication tables because absolutely none of the other methods worked. Just like for our kids who are learning, when the motivation is right, parents can more than step up to the plate to homeschool.

    My son’s off to college in a couple of months. He’s an amazingly gifted writer with a strong interest in the major he has chosen.

    The only things I would have done differently would have been to have shared our story more and to have asked for more help from other families.

    Thanks for the video and the post Penelope. As usual, it is spot -on…are you clairvoyant?

    • Briar
      Briar says:

      Success stories for special needs homeschoolers are so, so needed. We’ve caught a lot of hell over the years for choosing homeschool instead of choosing to fight for an IEP. At 11, it is beyond clear that we made the right choice, but still… there are days.

      Congrats, to you, and to your son.

  2. Mark W.
    Mark W. says:

    This post and other posts you’ve written are probably about the closest I’ll understand to what it’s like to raise a special needs kid. And to think I started reading your posts for career advice! Now I think I get more life than career advice from a different perspective from you. I really like your photo in this post. You may want to use this photo or one similar for this blog and have a different one for your other blog. Maybe.

  3. Bec Oakley
    Bec Oakley says:

    “Now I can focus on figuring out what my son really needs instead of what my son qualifies for.” Yes!

    The thing that tired me the most about fighting to keep my kids at school – and it was a fight, every damn day – was the burden of constantly educating the educators about their needs. Autism isn’t rare. At 1 in every 88 children, their needs are no longer all that special. How common does a condition have to get before it stops being the parents’ responsibility to teach the teachers how to accommodate them? *here endeth the rant*

    Anyway, in the end I decided that all the time spent training and fighting and asking and fixing and trying to squeeze them into the round hole was better spent learning. My only regret has been not doing it sooner.

  4. Jason
    Jason says:

    We have actually had the opposite experience with public school for our son, who has autism and low muscle tone. Before he was diagnosed, he was in a very exclusive, expensive, and highly-regarded private preschool (on a scholarship). They treated him terribly and refused to do even the simplest accommodations for him. Everyday we had to fight, fight, fight. We were very fortunate to find a wonderful organization called Disability Rights California (http://www.disabilityrightsca.org) who took on our case for free.

    When we left that school we had an IEP meeting with the school district. We when into the meeting prepared to fight, fight, fight! By the end of the meeting, my wife and I were in shock. They were giving him every service we would even think to ask for, and more. And we didn’t have to fight for any of it.

  5. Jana Miller
    Jana Miller says:

    This is a beautiful post. It touched my heart and I don’t even have a special needs child. My dad was a school principal and he cared about kids and at the same time he had a budget. This is tough for many administrators.

  6. Elizabeth Aquino
    Elizabeth Aquino says:

    Thanks for sharing our video. I’ve gotten many, many emails from people who have and who DON’T have children with special needs — I think the video does speak to everyone faces an out of the ordinary situation, whether that’s caring for an elderly person, a typical baby or a child with complex medical needs. It was so interesting to me that the same messages came up again and again: “ask for help,” “trust yourself,” etc. I love your message — and applaud you for having the inner and outer resources to homeschool!

  7. Bird
    Bird says:

    I really love the tone of this post. One of my favorites. Just tells what you have done, and lets your family’s story sell the larger idea.

  8. Lauren
    Lauren says:

    Thank you for this post, and the video. I have a son with cystic fibrosis; he is only 6 months old but his older brother (without CF) is approaching school age so it’s made me really think about what it will be like to send the youngest to school too.

    I have considered homeschooling on and off over the years and never truly made a decision either way. At the moment we are defaulting to our local public school, which is very small. I am terrified of sending my oldest there; I didn’t have the best experience at school and don’t want to have him re-live that.

    But when it comes to my youngest, I am beyond terrified. He needs medication every time he eats and the dose must be tailored to the amount of fat in the food he’s eating. He must follow a high fat, high calorie diet. He must do daily chest physiotherapy (which we would do at home, but if he is unwell it can take hours out of the day, morning and night). And most importantly, he must not come into contact/be in proximity with anyone who is sick. That includes a cold. If he gets sick, it’s likely that he will need to be hospitalized.

    I worry that we would get a teacher who does not understand and does not care, who would forget to give him enzymes, who would forget to notify us if there is an illness in the class so we can take him home, who would be lax with hand washing procedures. I know I can fight for what he needs and get it, but I don’t want the school to become a battleground. I don’t want my son to feel ostracized.

    I have other reasons for considering homeschooling my children as well, but that is my big concern for my youngest.

  9. Angela Salzwedel
    Angela Salzwedel says:

    My name is angela. I have a child with Seizures and O.D.D. The meds for her seizures is working, but the O.D.D. is the major problem for the school. She is in first grade and is so defient that the school cant control her. They hold her down (witch makes things worse), She does not like adults telling her what to do so when she starts hitting unstand of calling me ( i am 3 blocks away) they say she is doing it out of spite and she thinks on what to do next and how to get kicked out. I dont know any 7 year old child that thinks like there adult. Her IEP’s are never working, I want to home school her and now i am in the process of fighting for it. We had are first IEP since i refuse to give up today. It ran over because i am not going to give in anymore. they are torturing my child and they dont see it. is there any help out there. I am beyond poor and cant afford a lawyer even if i needed one. I really dont check messages much so here is my number. If anyone has any helpful things please call me. 715-213-8885 We live in nekoosa, wi Please help

  10. Dad IS here!
    Dad IS here! says:

    Ok I’ve read all the posts and I for one I can sympathize with the whole ‘Fight, Fight, Fight” mentality, because I had to do the same for my son ever since he started school.

    I agree with the bit in the article about the IEP’s, enforcing it, customizing it to fit the needs of the child or children. Also from my experiences over the most recent years I have found that teaching your child who has special needs yourself is better and more cost effective than trying to get the schools to do it. I have read articles such as these before and it seems that the experiences and results are the same all over.

    Earlier in his Pre-k days my son was assessed with a emotional behavioral delay and from what the counselor was telling me it sounded as though she wasn’t really sure.
    This was a typical reoccurrence with psych’s and counselors from my experience.(7 psych’s and 4 counselor, private and public school) They seem to be making guesses based off 2nd hand information from teachers rather than seeing how the child performs for themselves. Of course that would cost more in the end and still would not guarantee that your child would be well accommodated for. NOPE!, It would only mean you would have to go and fight on another issue regarding your child at a later time.

    So your best bet is to do it yourself and get all the help you can get. No holds barred, network, network, NETWORK!, for those who are just now experiencing the lack of thorough school support myself and others have gone through and are wondering what to do. That’s why I’m here now.

    As it stands now ever since I started homeschooling my son he’s been doing much better in his classes. Especially in Math, Writing and Hist./Geo. His comprehension of complex, processes and pulling out specific details to answer questions and solve problems has improved a lot. Also his creative writing skills have improved too. I am hoping to get him back to his home school and pray he is able to be just as productive there as he is at home.

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