The catch 22 | Imamother

amother

Fri, Feb 03 2012, 9:14 am

My son has some areas where he needs help. He has been evaluated and is receiving Language, OT, PT, and some behavioral therapy. Professionals who have seen him have either said that he is the type of kid who cannot be classified since the areas where he needs help are not as typical as usual, or have rushed to slap a label on him without really getting to know him (not very professional of them and I have therefore not taken them seriously).

This is where it gets complicated. He is the kind of kid who at first glance looks like he has no issues. If I would tell many of my friends, neighbors, and even some family that he is "special needs" they would think I am crazy. Even those who know him better would just think he is "difficult" or that I am just lacking in my parenting shock

which results in him "acting up" when he does. He functions pretty well with the help that he gets, but things do blow out of control at home often enough for it to be on ongoing issue.

At this point, he is getting the help he needs, but I struggle with this: I am not the type who lives for shidduchim. I have made several choices for the benefit of my family which may not look "perfect" to some in my community and may eventually backfire with shidduchim but I honestly believe that shidduchim are bashert and I have to put my family first. However, the stake is much higher here.

I am often tempted to just "give in", tell the whole world that ds is probably on the spectrum, and explain what is going on with him so that
-people around me will be more understanding
-maybe people will help out more
-maybe I would be able to get him even more support or services

However, doing so is really taking a big gamble. It is the kind of situation where I will never really know for sure if he is/was so that 10 years down the line if he is doing well, I cannot just say "oh, we made a mistake he is really not on the spectrum, he is normal so disregard anything we have said about him as a child" In a perfect world, when he becomes an adult, people would judge him based on how he is then, but our world is far from perfect and by being open about this, I may just be doing a huge disservice.

Does this make sense? Can anyone relate?

amother

Fri, Feb 03 2012, 9:39 am

True Sherri, the label can help and yet at the same time limit.

You are right, it is not really about shidduchim (makes me feel better because I am really not the type to worry about stuff like that) but about "defining" his life in a certain way.

I was watching "parenthood" where the parents find out that their child has aspergers. I was crying straight through it. It seemed so freeing for them to just tell everyone about it and get all of the support and help they need.

I look at him now and can see both possibilities equally. Either these limitations will keep following him and we will keep dealing with them and getting him the help he needs (including dealing with shidduchim appropiately, we are not the type to dig our heads in the sand). On the other hand I can also picture him "catching up" and being a brilliant, great kid who has the world open to him and then it would be a real pity if I had saddled him down with a label. If I knew what the outcome would be, I would be able to deal with the present that much better.

Oh, if only I could get my hands on that crystal ball.......

timeout

Sun, Feb 05 2012, 9:35 am

I'm in the same boat as you and my son is 10 1/2. I on the other hand dont hide what's going on nor do I take out ads to tell people about what I am going thru. Mostly I deal with this alone and have a behavioral therapist who sees my son once a week, a Rebbe tutor twice a week during hebrew and P3 for english.

There are no right or wrong answers on how to deal who to tell in this situation since as u said no one looking at your son can tell.

amother

Sun, Feb 05 2012, 10:00 am

Do you believe he falls on the spectrum? Does it matter? Is he getting the services he needs anyhow? He seems like he gets a range of therapy so what exactly do you need a label for? Especially one that he doesn't seem to fit so clearly.

I have a friend who says her son is on the spectrum and the more I get to know him (and mind you I have a special needs son so I have some clue about all this) I have no idea where she got the label from. And at one point she said the therapists weren't sure if he was actually on the spectrum or not. So she pushed for the label so he would qualify for services. But if your son gets what he needs skip the label and skip the possible judgment.

And I don't even call my son special needs to anyone. I simply say he has some delays and gets help in certain areas. I've seen enough kids in doctors' waiting rooms with serious issues to know that I am truly lucky for my son. His delays are minor compared to those special needs kids I've met and he does not need that label. At least not publicly. That's another thing, you can put whatever you want in his file for services but you don't have to go telling everyone, especially if he's not a clear fit.

amother

Sun, Feb 05 2012, 12:56 pm

OP here

I don't know what I believe anymore. Some days I am convinced he is on the spectrum and who am I kidding. Let me just face the truth and get all the help I can get. On "good days" I think I am crazy for even thinking that way.

On the one hand, he is getting help and that is the main thing. On the other hand he would probably get much more comprehensive help if he were officially labelled. I guess the middle of the road is safe, although it is strained.

Bnm, do you know of any adults who were diagnosed as on the spectrum and are now "normal"? It is a relatively new phenomenom to consider these types of kids on the spectrum altogether.

chevron

Sun, Feb 05 2012, 1:06 pm

amother wrote:

How would it help him get more professional help if family and friends knew he was on the spectrum?

amother

Sun, Feb 05 2012, 1:37 pm

I have a nephew who we all think has Aspergers. I have never spoken to my sister about it. My husband was asking me about it this week, I told him we are all aware. If my sister wanted to speak about it, then she knows we are here for her. My nephew is in college. His is doing brilliantly. He does some very strange things and is very difficult. Not labeling him did not change anyone's perception of him. If they had not been in denial, he would have gotten the help he needs. My nephew will probably have a nice parnosa.

I have a brother who was labeled as [crazy] when he was younger. My mother was very resistant to the idea of him being left back. She returned to teaching to get the standardized test. She kept my brother out of school and then taught him the standard test. She did this for two years. My brother is now a physician. I got bashed big time for this on another thread.

I have a son who is now labeled as having ADHD. By labeling him, I was able to get him the treatment he needs. He is now doing well. I resisted putting him in a special school although I was urged to do so by a few people. He is main streamed and doing great and is a top student in a top school. He makes 100s quite often. He is very popular and totally appropriate. He is helpful to those who have problems. He is an all around great kid and a pleasure to parent. I do not tell anyone his diagnosis unless it is pertinent to his schooling. I can relate very much to having a difficult child. I have another child who is considered very eidel. I feel your frustration.

I would investigate the options. By labeling your child, you can qualify for services; but don't let the label limit him.

Hatzloucha with your decision.

amother

Sun, Feb 05 2012, 1:37 pm

amother

Sun, Feb 05 2012, 2:33 pm

amother wrote:

Interesting read on someone who at one point fit the description for aspergers. Remember there is no blood test for all this....

http://www.nytimes.com/2012/02.....t=cse

OP here:

I found this article very interesting. The difference is that in our communities the label still has stronger, life long implications. Here he was sort of able to say "isn't it crazy they once thought I had Aspergers", however in our communities, there is no such forgiveness.

I really appreciate your linking it here. It has given me much to think about......
And yes, it would be so much easier if there were a blood test of some sort.....

amother

Sun, Feb 05 2012, 3:52 pm

I'm glad you liked the article. My son seems similar to your son and everyone makes this whole big to do about what to label him now that he's in grade school. I actually just had a conversation with a Board of ed psychologist about this b/c she now wants to do an autism eval for my son among all his other routine things to get his school age diagnosis. I told her my husband's opinion as a doctor: there is no definitive diagnosis with our child. He has delays and we have known this for years. We treat his symptoms. We don't care what the label is b/c with or without it we treat his symptoms. No one has ever suspected autism with him and we're not going to discuss that yet again just b/c it's some trendy diagnosis with any kid that presents "issues." Social-emotional delays does not equal autism. Neither does quirkiness.

OP, unless you really believe he's on the spectrum and needs more therapy that could be offered with a label, just forget the label. It won't somehow cure him. Your son is your son. He has things he needs help with. We all do. You're doing everything you should be doing for him. You're getting him a variety of help and you seemed worried enough as it is. Why give him some label so you can then worry about shidduchim and all the yentas in town? So many kids have therapists and tutors for extra help and specialists for a variety of problems. Everyone has something they need help with, young and old. It's nothing to be embarrassed about.

amother

Sun, Feb 05 2012, 4:15 pm

amother wrote:

Op again. I really appreciate your insight. I think I am holding on to this picture that in some perfect society I would be able to share the burden so to speak with others around me. Maybe if he were in a special school or program he would be able to reach so much further. I may be fooling myself to think things would be better that way.....

Fox

Sun, Feb 05 2012, 4:38 pm

I can't add much to what other posters have written, but I think you're doing a great job, OP. You're getting your son the help he needs, and that's a parents first priority, whether the "help" is major or minor.

A number of years ago, a respected rebbetzin in my community had to go to bat for her son. Of course, she took a great deal of flack for it, including from her own family. However, she said something that I'll never forget: "My husband and I do not put our family name ahead of our child."

Although never faced with exactly the same circumstances (and not having a particularly choshuve 'family name' to concern me), I've often found myself repeating those words whenever I've had to make a decision "out of the box" on behalf of one of my kids.

Hatzlacha!

amother

Sun, Feb 05 2012, 4:43 pm

Fox wrote:

Thanks Fox, I appreciate your faith in me! The thing is, I do not keep quiet about this because of my family name or concern about other kids' shidduchim. I do it for HIM. In case with Hashem's help everything will turn out great in the end, the last thing I want is for him to rightfully be upset with us for setting him up with a label.