Sunday, February 20, 2005

Park your ego at the door: On raising a child with disabilities

I confess that I’m beginning to find reading some of the posts by Z at depressing. Her tales of seeking help for her son with special needs remind me of the period when my husband and I were doing the same thing.

I remember all too well the first time we put a pair of behind-the-ear hearing aids on our son. All of a suddenly, my cute little boy had “elephant ears” sticking out. I was heartbroken. So I did the only reasonable thing: I said to myself, “Shut up and get used to it.” And I did.

Then there was the year we mainstreamed him. What a relief! Finally, no more labels. No more “Emotionally Disabled.” No more “Learning Disabled.” At last, we had a normal child. (Well, there wasn’t much we could do about the “Hearing Handicapped,” but that was the least of his problems, at that point.)

Our relief lasted only a few months. In the middle of the school year, I went to our son’s school counselor and told her that we wanted our son reclassified disabled and put back into a special education program the following September. She looked at me as if I were nuts. “But he's going to fall behind.” And I looked right back at her as if she were clueless. “What do you mean, ‘he’s going to fall behind’? He is behind!”

From the start of the following school year until our son graduated from high school, he was labeled Emotionally Disabled/Hearing Handicapped. And it was only because he was labeled emotionally disabled that we were finally able to get him into a program that came pretty close to meeting all his needs.

We’ve seen and heard of children who never got the help they needed because their parents were too proud to admit that their kids had a problem. It’s natural for every parent to want to claim parental bragging rights. But don’t let your ego get in the way of your child’s welfare. Every parent has a solemn obligation to help his or her child reach his or her maximum potential. If your kid needs help, it’s your responsibility to try to ensure that he or she receives it.

And if the only way to get that help is to put a label on your kid, do it.


Blogger Elianah-Sharon said...

I have never been too proud to admit my child has a problem...I wasn't sure if that's what you were getting at here. We ALWAYS said he had special needs...these needs were undefined and from the age of two, we were advised NOT to define them because our advocate through the ARC advised us that the school district could use such a diagnosis to do things we didn't want done.

On the contrary, and we have reports from the neuropsych who eventually dx'ed him, we did ABOVE AND BEYOND what we needed to do.

Evan has been in therapy since 10 months of age. He has had nearly continuos speech, developmental, occupational and physical therapy as appropriate. When the school district wouldn't provide enough, we were able to get it through Easter Seals.

We recognized there was a problem with socialization and so we had him in preschool, after school and summer care with a LOT of kids in a teaching environment.

We didn't just let him sit and suck his fingers and hope things would get better.

Evan's disability, even now, is not easily definable. Right now we're fighting with the casemanagement service to have him labelled as mentally retarded even though he isn't. The reason is because in our county, MR has more available services and he would get more assistance than if he were only MH which is what he would be if he was simply autistic.

But with a 52 IQ, you'd think he'd clearly be MR (below 70) right?

Not right.

So I hope this clears up a little bit of what our issues have been. It's certainly not that we don't want to recognize we have a child with special needs. We have known that since Day 1 pretty much. What we face is a school district who refuses categorically to comply with federal law in providing this child an education. We had a diagnosis of apraxia AND auditory processing disorder from the time he was in preschool. No one ever told us we needed to see a neuropsych until last year. As for not getting a more complex diagnosis when we initially did the chromosomal testing...they said there was nothing clearly on the radar and that they wanted to "fish" for a diagnosis which would mean painful testing and no clear answers, maybe ever. We chose to deal with the manifestations of his disabilities WITHOUT a name. And that's what we did. And continue to do.

In fact, just this week, the casemanagement service told us that because Evan is so well educated and functions so ideally - because of what we have done and continue to do and expect of him - this makes him seem less eligible for services. In other words, we shouldn't have done anything and we should encourage behavior issues because while we have documented problems with understanding, learning and social skills, only people who clearly LOOK disturbed would get services.


Sun Feb 20, 09:20:00 AM 2005  
Blogger PsychoToddler said...

I have a post about this here:

Thank G-d he only had a speech delay, and is doing well now. But the Jewish establishment didn't know what to do for him. We got help from Easter Seals.

On another note, my oldest son, now 15, just got ear tubes Friday. He's very smart, but was getting flagged for "inattentiveness." It took several Dr. visits before the hearing loss was documented and the need for surgery determined. This past shabbos, we had him home, and he was a completely different kid. Participating in the conversation, following what was going on, instead of zoning.

Sun Feb 20, 11:16:00 AM 2005  
Blogger Elianah-Sharon said...


I find that the Jewish establishment at least insofar as my own community doesn't have a clue about what to do for Evan. They weren't aware of JBI (Jewish Braille Institute who we ADORE for all their concern and help) nor was any information available about the inclusion camp run by the JCC twenty miles away. As far as his religious education, they are only now realizing they have to do SOMETHING special but they don't know what and they don't have a plan. I find that they really aren't connected to the resources they should be to make the referrals they should be able to. Maybe this is something I can help with, at least in my own community.

WTG for your son :) Evan had tubes long past what they said was a normal age...and it IS amazing what being able to properly SEE and HEAR can do for a kid's attentiveness isn't it?

Sun Feb 20, 12:24:00 PM 2005  
Blogger PsychoToddler said...

Yes Z, I'm frankly shocked at how different he's acting even one day post-op. We'll see what it does for his school grades.

In Wisconsin we have Keshet, which is an organization to mainstream kids with disabilities, mainly though personal aides in the school. But they don't do anything for preschoolers, like my middle son.

Sun Feb 20, 12:36:00 PM 2005  
Blogger Shira Salamone said...

Me and my big mouth--Z, after all my years as a special ed. parent, I should have known that, just as our kids' disabilities rarely fit into the cookie-cutter classifications available, so there might be circumstances in which it would be more beneficial to the child to treat the symptoms than to put a label on him or her. The important thing is to get the child the help that he or she needs. If labeling helps, do it, but if labeling might make it harder to get help, just get the help. As I said in Part 5 of this series of posts, "It shouldn’t matter what method is used, as long as the goal is reached."

I read your seven-part series, "When Something's Wrong," and recommend it to all parents. (Check it out at It's important for parents of kids with disabilities to understand that getting help can be tough, but that one should never give up the fight--occasionally, one actually wins a battle, and the kid benefits from the parents' persistence.

Here are some definitions that I had to look up to understand your son's problems. I hope this will help other parents whose kids might be in your kid's boat.


1. A disorder of voluntary movement consisting of the partial or complete inability to execute purposeful movements without the impairment of muscular power and coordination.
2. A psychomotor defect characterized by the inability to make proper use of a known object. (The American Heritage® Stedman's Medical Dictionary, Copyright © 2002, 2001, 1995)

loss or impairment of the ability to execute complex coordinated movements without impairment of the muscles or senses (Merriam-Webster Medical Dictionary, © 2002)

inability to make purposeful movements (WordNet ® 2.0, © 2003)”

My understanding of Auditory Processing Deficit is that the microphone is working but the CPU is down--the person's hearing is fine, but the brain, which is the central processing unit for interpreting what one hears, doesn't process the auditory signals correctly. In plain English, you hear properly, but you don't necessarily understand what you hear. Please correct me if I'm wrong.

Sun Feb 20, 04:44:00 PM 2005  
Blogger Shira Salamone said...

Psycho Toddler, I'm glad you got *both* kids' hearing and/or speech problems straightened out.

I applaud the efforts of organizations such as Keshet, Yachad (for Jews with intelligence challenges), Our Way (for Jews who are deaf ), P'Tach (for Jewish kids with learning disabilities), and others whose names I've forgotten or of which I'm not yet aware. I just were there were more such groups and more opportunities for Jewish special education.

Sun Feb 20, 04:53:00 PM 2005  
Blogger Elianah-Sharon said...

Shira, you're absolutely right and thanks for clarifying what you meant. Still, it inspired a very lengthy series from me, which when combined with yours, really contains a vault of valuable, first-hand information!!!! Brava to us both!

I'll add those definitions into my series. Thanks for pointing that out! I wrote so quickly it didn't even occur to me.

Sun Feb 20, 05:20:00 PM 2005  
Blogger Shira Salamone said...

Speaking of special education, another one of my pet peeves is the insistence that *either* total mainstreaming *or* education exclusively in classes for children with disabilities is the right thing for every child. Some kids benefit from mainstreaming, some from being in special ed. exclusively, and some need a combination. Some children benefit from being mainstreamed but "pulled out" for Resource Room assistance and/or therapy, or from being mainstreamed with an assistant right in the classroom. Our kids weren't made with cookie cutters and shouldn't be treated that way.

For our son, mainstreaming was a disaster. Even though the teacher was willing to help, she simply didn't have the time, with over 30 students in the class. In my opinion, many mainstream teachers lack either the time, the training, and/or the patience to work with children who learn and/or behave differently.

Another consideration that many people fail to take into account is the question of which program/service or combination of programs/services is/are most likely to enable one's child to develop age-appropriate social skills. For example, is it best to put a profoundly deaf child who communicates via sign language in a mainstream class, where s/he will interact almost exclusively with the teacher through an interpreter and never have any opportunity to develop friendships with classmates? Can such social isolation lead to a secondary problem of depression, and, if so, how might that impact on the student's ability to learn and to interact appropriately with others as an adult? (Did I mention that I studied American Language and tried to teach it to my son when he was a pre-schooler, on the grounds that, given the family history, it's likely that his hearing will deteriorate further as he gets older?) According to United States federal government law, every child is legally entitled to a free public education in the "least restrictive environment." But, contrary to common perception, the mainstream is not always the least restrictive environment. It's up to the parents, with the help of education, medical, and therapy experts, to determine what's best for each child.

Sun Feb 20, 05:27:00 PM 2005  
Blogger Shira Salamone said...

Speak of post too quickly, that supposed to read "American Sign Language."

Sun Feb 20, 05:32:00 PM 2005  
Blogger Shira Salamone said...

Ouch--time to get more shut-eye. That was supposed to read "American Sign Language." When I manage to omit words in two consecutive comments, it's time for me to go back to bed!

Sun Feb 20, 05:34:00 PM 2005  
Blogger Elianah-Sharon said...

You are 100% correct. We realized early on that Evan learned best in a one-on-one situation and so his schedule has usually been about 70% in learning support in the 1:1 situation and 30% mainstreamed. In 4th and 5th grades, that went down to about 10% mainstreamed. In our case, this caused catastrophic social maturity issues. Evan never learned how to interact with his peers nor they with him. We recognized that classes we were concerned with TRUE learning in - things we considered of primary importance like reading, spelling and math - HAD to be taught 1:1. Classes like science, social studies, gym, music, art, shop and home ec were best to be used as mainstreamed environments...which we feel is beneficial to everyone involved.

I belonged to an inclusion group that went along with our special ed PTSA. The problem in our community is that the school districts have allied to have ALL special needs students removed to a separate facility. This is wrong for many reasons.

That's another soapbox for another time but you're right - every child has to be evaluated for his or her own strengths and abilities. A mainstream environment can be the best thing that ever happened or the worst and it's something that has to be carefully considered. In our case, this year, they moved Evan to a special ed science/social studies room that had the emotionally disturbed kids ie. the ones who were behavior problems. In other districts this may not be the case but it was a dumping ground in our district. Evan was very upset by the behaviors exhibited and we didn't need problems we didn't have before. Having this behavior modelled daily for him as appropriate behavior within this classroom was not one of our goals. Additionally, autistic children need proper social stimulation and modelling and for an autistic child like Evan, provided it does not cause anxiety, mainstreaming for a class such as science and social studies is appropriate.

His work is modified as are his grades and he gets B's in both now, particpates in class projects and participates in class discussions. This shows him how to act properly with his peers.

Sun Feb 20, 08:16:00 PM 2005  
Anonymous Rivster said...

We are fortunate that our shul has been wonderfully welcoming to our son who is on the autism spectrum. Unlike the social struggles he faces at secular school, he feels as though the other kids at Religious School are accepting and kind and mentchy.

As one of the rabbis, it makes me proud. But when I hear stories of exclusion, I am saddened for our kids. All of them. Those with identified needs and those who are not being taught how to embrace everyone.

Thu Nov 19, 02:10:00 AM 2009  
Blogger Shira Salamone said...

Rivster, you are very fortunate to have a welcoming congregation. Our own shul was not so welcoming, I'm sorry to say. Neither were some of the other kids and adults in the neighborhood. Our son and I were politely "unwelcomed" to a few places, and he had very few friends as a child.

We got lucky in the long run--aside from the hearing loss, our son managed to outgrew, or learned to work around, many of his difficulties. I know that not everyone is that fortunate, and I wish you and your son the best of luck.

By the way, I don't know whether any of the other posts in this series will be of help, but you might wish to check them out. I have a link to the entire series on my sidebar.

Fri Nov 20, 10:48:00 AM 2009  

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