We have been having an interesting discussion lately, so I thought I would take a poll. Tyler has been going to Kids on the Move for a few months now, and while they have done a LOT of assesments to see what areas he needs help in, they have never once mentioned diagnosing him with anything specific. Their focus is on working with the symptoms he has - his speech needs help, so we have a speech therapist. He needs some social interaction skills, so there is a playgroup for us.
With the family reunion last week, I was talking to one of my sister-in-laws whose son is autistic. She said that they also went through the early intervention stuff that we are doing, and also found it to be helpful- but only a little. I feel the same. They help, but they don't come often enough or help enough in many ways. She said she would get me the number of a place in SLC she went to. They ran a battery of tests and diagnosed Nathan with autism, and from there she got him into more speech therapy and other things that really opened doors for him.
And just a few days later, my Uncle emailed me about the exact same place, and how much it helped a couple they know with their child's disabilities. He had no idea my Sister-in-law had talked to me.
I guess that means we need to go there. But Christopher and I have our reservations. As a teacher, I was really irked by high school kids who would come in on the first day, arrive at my desk, and matter-of-factly announce that they had such and such disability which meant that they didn't have to turn in all the homework or finish tests on time or x, y, and z. Some of them really did need the help. But a good portion had a different "disability" that hindered them: the label. Their parents had them diagnosed a long time ago, and now this teenager was so programmed that they honestly believed they could not be anything else the rest of their lives. They knew what was expected of them, and it was less than what was expected of anyone else. It made me want to cry to sit in meetings with teachers, parents and the student while the parents sat next to their child and said "they can't do ____, you can't make them ___ like the other students," and such things over and over. Why don't we give them the chance, and keep telling them they can do anything if they work hard enough and don't give up?
Now, don't get me wrong, I am not talking about actual, severe disabilities. Nobody as autistic as Rainman or anything here. My nephew is truly autistic, and has developed leaps and bounds because his parents know what to do with that. I do believe that there are a lot of kids that truly benifit from these programs. In fact, one time I even talked a parent into getting the paperwork for expemptions going because he was a good kid who worked really hard and needed the extra time on tests, and I couldn't make exceptions for him without the papework. I am talking about the borderline kids, who use their learning disability label as an excuse for laziness.
So here we are. I was actually liking NOT having a label on Tyler, because I see him as a "borderline" kid, who is making TONS of progress, but way behind everyone else. I have been operating under the assumption that whatever the cause is, he will just be a little slower than other kids his whole life. And I plan to teach him that that is ok. Other kids can read something once for homework, and he might have to read it a few times, but that is ok. The most important thing to me is to teach him that he just has to put in that extra effort the rest of his life. I am not sure I want a label to make him think that he can't be like everyone else. I want him to know that he can if he puts his mind to it. But when two family members come out like this and point me to the same place that diagnoses the problem, I guess I need to just take the hint.
So what do you guys think? Would you want to know if it was autism, brain damage, or whatever else they label it as? Or would you rather just treat the symptoms?
5 comments:
Sarah-
Absolutely no question, I would want to know the diagnosis so that I could learn how to treat my child’s symptoms. Since I don’t have a personal experience with this I will have to rely on my friend’s experience. My good friend has triplet boys just two months older than Tyler. She started noticing that one of them wasn’t developing at the same rate as the other two. It was her doctor that suggested she take her son at 16 months to the place that your uncle (my dad) referred you to. She said that right when the doctor met with her son he told her that he was autistic. She told me that this diagnosis was not what she wanted to hear, she wanted to hear the he was just developing a little slower than his brothers and was just a little behind. She said that once she initially got over hearing that he was autistic, she was then able to learn about all the things that were available to help him and also learned how she could help him. My friend learned that there are very specific ways to treat her son. She wouldn’t have known how to treat his symptoms the way he needed without getting a diagnosis first. So I know if it was me, I would want to know exactly why Tyler is developing slower, so that I could then learn the specific ways to treat his symptoms.
Josie
I would want to know. Steven and his brothers all grew up with ADD, and they all talk about how they wish that they had known it at the time, because there's help out there for people with ADD. They think that knowledge would've given them power, and would've made school a little more bearable. As for Tyler, I think it would just be good to simply know what it is exactly you're tackling. If you know, then you can do research on that specific thing, and learn a lot about it that could then benefit him. I definitely agree with you that you should NOT let that be a crutch for him his entire life, but it seems to me that you two are the perfect parents for something like this, because you won't let that happen. You'll use it to motivate him to try harder rather than always telling him that he doesn't have to do this or that because of it. You two will be GREAT for Tyler!
Sarah,
There is so much I could say but I think I will just reiterate the points I made before.
Time is of the essence.
Everyone, everywhere has a waiting list and you can't wait to decide what to do. You need to act as if his life depends on you, because it does.
I know it is hard to come to terms with the fact that there is something wrong with your little boy.
I have walked in your shoes.
I had no idea what to do when I started on my journey...I learned along the way. There wasn't as much information available about Autism 9 years ago.
The only way to truly help Tyler is to understand what is going on with him.
Some people prefer to treat their cold symptoms without going to the doctor...come to find out it's not a cold it's allergies and they have wasted a lot of time suffering.
A diagnosis is not something you need to be afraid of, unless you let it become a stumbling block and do not use it as a stepping stone.
You have the power to do something for Tyler and getting hung up on a "label" is not doing him any good.
You have the choice to use a diagnosis to "label" him or to help him.
The hard thing with any developemental disability is that time is your enemy.
Once children are 5 yrs of age it is a lot more difficult to retrain their brain.
I hope this doesn't come across sounding to harsh but you need to stop contemplating and DO something.
I love you and your family with all my heart. You are all in our prayers.
Call if you need any more info or phone numbers!
Hugs,
Kathy
Sarah-
Yea to everything that has been said to this point. I don't need to reiterate what has already been written, but I would like to add a couple of comments.
Once you have a diagnosis as to what is the cause of Tyler's delayed learning, you will have a network of support. You will find yourself surrounded by mothers that will have walked the same path as you. Tyler will have playgroups where he will be surrounded by children with the same needs.
Finding out the cause of your concern for Tyler is not a label. It is a diagnosis that will give your family the tools to help him. Then you can feel confident that you have done everything possible to give him every opportunity that is available.
Knowing all that you can do to help him will bring peace and comfort.
We adore and love him and only want the best for all of you.
With our love and prayers,
Shawnie (Hammi to Tyler)
Sarah-
I completely understand your concern about labeling Tyler... but I don't think that's what needs to happen if he gets tested and diagnosed.
You and Chris have to be the ones who decide what to do, but both in my doctor shoes and in my mom shoes I think you will find new opportunities for Tyler if you get him tested.
As long as you don't let Tyler go to his teachers and say "I can't turn in my homework because I have 'a condition'" and as long as you continue to teach him he'll just have to work a little harder, he will never be a "lazy kid." I think you'll know better how to treat his symptoms when you know exactly what you're dealing with.
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