Traumatized by EI
Find a Conversation
| Tue, 10-25-2005 - 9:41am |
Hello, all,
This is basically a vent...
I have a 4 year old with Asperger's, and a 1 1/2 year old who has a few intelligible words, many words that only his parents understand. I have been fretting a bit about his language, but I also "knew" in the back of my mind that I was unfairly comparing him to his Asperger's brother, who spoke in clear two word sentences at the same age. I also "knew" that the baby does not get the intense attention his brother got at the same age, since his brother is competing for attention, and quite high-needs. I "knew" that he was not on the spectrum since he points, he has great eye-contact, he makes "vroom" noises and animal noises as he manipulates toy cars and animals, and he imitates.
So I called Early Intervention so that they could tell me my baby is fine and I could stop over-analysing and stop feeling so guilty for giving his brother so much attention. My baby's preschool said that they did not see a reason to call EI. A social worker who helps my older boy cope with frusteration commented that he seemed fine to her. When I told her that I called EI anyway, she commented that it's free, and it might help me relax about the baby. It did not seem to enter her mind that the baby is going to need services.(And the social worker not only works with ASD kids, she has some of her own!) When I called EI I reported that I wanted to stop obsessing about my son's normal vocabulary when his brother's was so advanced. It was the only honest way I could discribe my concerns.
Well, the silly psychologist appeared to forget her lines. She was very concerned with his not pointing to pictures, his eye contact with her was not good, she did not see his pretend play with vrooms and animal sounds, and she felt that what I counted as pointing was more along the lines of using adults like a tool. She felt that what I counted as imitating was more along the lines of reacting. She felt that his vocabulary was not where it should be, and a little "strange" because the levels of the words he knows seems mixed. She was already leaning PDD.
Of course, the baby is, well, a human baby, and he is a little different every moment. Especially since she did not get to see him "vroom," and since his mood seemed flat to her, when we think he is usually happier with a greater range, the psycologist is coming to see him a second time. I still have her second appointment, the speech pathologist, and the PT coming. Only then will I get a more complete picture. However, I am already jumping ahead and feeling very sad and shocked.
Thanks for "listening."
Sidney


Kids, particularly babies have off days. Particularly in a brand new situation where some new adult stranger is asking us to do tons of stuff. It is perfectly normal for a wee little one to be a bit different then. I would bet that this is the case. I am glad there is more evaluations involved prior to thier final determination.
One thing I would ask is to have the psychologist go an observe him in a regular setting where he is relaxed. If she still is leaning toward PDD and you do not think that it is accurate, I would get a second oppinion.
It is hard with younger ones. My oldest was diagnosed fairly young on the spectrum and her next younger brother showed lots of AS signs but ones that were different from his sister. Because he had skills she didn't and was different we were in denial about his dx for a very long time and it took longer to get him a diagnosis and help he needed. He was diagnosed AS at 7 and is actually much more autistic in many ways than his sister.
On the other hand, my youngest son we did take in early just to be sure. He is a bit different but no one could really put a finger on what was different, eventually he did get a borderline PDD diagnosis and an ADHD diagnosis and some support services through school. He is now 5, doing fabulously on no meds and I think will not need the PDD diagnosis much longer. Sometimes I don't even tell about the ADHD. He is spirited and different but doing well on his own. And I hope he continues to improve and do fabulously. We did what you are doing now. Early testing and such to make sure.
It is great that you are just making sure with the baby by having him seen now. If you don't agree with this psychologist then I certainly would seek a second oppinion, but at the same time don't completely close yourself off to it either. Keep an open mind and keep an eye out just in case.
Renee
I also have a two and half year old son diagnosed with pdd-nos. His speech came very quickly and very clearly. At about 16 months he was putting two words together. I also have a 16 month old daughter who's specch compared to her brothers is not as clear and she is not using as many words. I asked my sons ST if her speech was normal and she told me my daughter was getting speech the more typical way than my son had. Looking back it was a little strange how Jake went from saying nothing not even babbling to his first word which was "apple"at 15 months and within a month he was putting 2 words together. As far as pointing goes, my daughter points with her whole hand still, her O.T seemed concerned because this is related to joint attention.I know my child points because when the phone rings she points at the phone and then puts her hand to her ear like she's talking on the phone.The one thing that really troubles me about my daughter is her eye-contact. She has great eye contact with me when she's across the room from me but when I hold her she won't give me eye contact but I have been told this is sensory related also. So basically I feel like we are not out of the woods with her yet and it may not become evident there is a problem until later on.
Teresa
Hi, Renee,
Thank you. I have learned a lot as a lurker and occasional poster by reading about your experiences.
I am already in a kind of pre-mature mourning for the possible loss of a "typical" baby, for whatever that means. (And yes, I know he is what he is, and I am going to think that that is perfect for him in the end, just like his irresistable but very high-maintenance brother.) Still, I am not all that worried about disagreeing with the psychologist because so far, I think she is responding appropriately to what she sees. I think that the baby was having an off day for mood (teething?) but many of the things that concerned her were typical for him. The psychologist is taking the time to see him again before she writes up her report.
If in the end my baby really is typical, whatever that means, and we had given him some services anyway, the services would have undoubtably benefited him all the same. If he is a baby who needs some services and but is borderline enough that we can ignore and deny for a few months or years, he will miss out on help when it could be the most effective. All for the dubious benefit of protecting the feelings of adults.
In addition, a baby is not concerned with stigmas and labels.
If, after all the evals are done and the clinicians on the team are leading towards accepting him for services, I am not going to disagree. Yes, I may have some emotional processing to do, but I'll just have to do it.
Sidney
Dear Teresa,
Thanks for sharing your experience.
I have found it so hard not to compare my boys, but I do it constantly. My older guy (now 4 w/Aspergers) learned speech more or less typically, but quite quickly, going from one word to two words to several words in order. Unlike Jake, he had words from 8-9 months. However, like Jake, he was never a big babbler. He seemed to prefer "real" words. If I had known then what I know now, the decreased babbling, the lack of pointing, and his expansive "labels" vocabulary could have tipped me off earlier. His differences became more obvious when he was two, and speaking in short sentences. By then, he was getting persevertive, repetitive, and stuck on topics. He also slowed in language development for things such as pronouns, which are not expected in younger kids. Actually, between the time he was 2 and 3, he language did not get a year more mature. Only his vocbularly increased a lot.
My baby, who is now 1 1/2, is way behind his brother in that he only speaks one word at a time, and very few of the words are intelligible out of context. What I have read from the development books and internet sites and from my pediatrician, this is fine. However, I was comparing the boys all of the time, and I couldn't help thinking, if my older guy was so far ahead of this and needs ST, how can the baby be doing fine? I decided to get him assessed to ease my mind, and was quite shocked when the peliminary feedback I got was that there might be some issues. (The baby hasn't been seen by the ST, yet.) I thought I was wrong to question the baby's speech because he points with his whole hand and kind of grunts when he wants something. Now I see that your son's OT is concerned that your baby girl uses a similar point. I had interpreted that as great because it is more of a point than his brother had.
My four year old gets his ST and OT at school, so they never see the baby, who goes to a different school.
My credo is, therapy can't hurt. It sounds like you are right there, too, keeping a close eye on your little girl. Thanks a lot for "listening" to my story, and telling yours.
Sidney
Dear Sidney,
Good for you for getting right on it. I echo the others, as my own son had language and seemed to acquire it normally, pointed, had great eye contact. Between 2 and 3 he started "echoing" some, but usually in appropriate ways so it was hard to tell. By 3, his temper tantrums were escalating and interactive language wasn't progressing. Although he used language that he had well and in context. And by then he was interacting with peers less and less.
We have had him in services since he was 3 and he is doing great, but had many dx'es, now borderline pdd-nos. We have been very fortunate to work with people who really understand the many different ways that PDDs can present. If not, he could have been one of the kids who could have slipped through the cracks and than really needed help later but it would have been late in the game.
And, as my son has many friends who are here and there on the spectrum, not one of them is anything like the others!!! So comparisons don't make one bit of difference.
Good luck, let us know how things are going!
yours,
Sara
ilovemalcolm
You have a great attitude about this. Good luck. Even when we know we are doing the right things and know in our head all the positive stuff, for some reason our hearts as parents just don't want to comply. It is still normal to go through the mourning even if in our minds we still know they are perfect the way they are.
I am finding that regardless you have to give yourself the time to mourn. Sometimes it isn't always about losing the child who we thought they'd be as much as losing some things taht we were looking forward to as parents, kwim? And knowing there is more work. And knowing that you are going to have to watch your child work harder and struggle more than other kids. I don't think I mourned them being the soccer champ or valedictorian. I mourned them just being happy and carefree.
But think of how much more we will appreciate thier accomplishments.
Yesterday, my daughter went to her first school dance. She actually has 2 friends now in middle school. When leaving I hear a girl behind us yell "Cait, WAIT!" and came up and game MY Cait a hug and said "Great dancing Caiti, I had a great time! See you tomorrow" Just like a regular teen friend. I still am having a hard time choking back the tears thinking about it. That same interaction to any other 6th grade mom there would have meant absolutely nothing. To me it meant the world.
Monday, I got a note from my sons teachers. About how he was playing basketball and it started to get rough so he walked away and did something else. The other boys ended up getting in trouble. Again this was HUGE for Mike. Typically he would have either gotten overstimulated and too hyper in class or angry and bopped someone.
I stop and smell the roses now.
Renee