AJ's Story

by Jessi
(Tyler, TX)

AJ was born at 7:37 PM on April 27, 2004 via a C-section. He scored perfect on his APGAR test and learned how to nurse very quickly. He had a little colic where he would cry for a few hours every night and nothing you did would make him stop. And he WOULD NOT take a bottle. This was no ordinary refusal either. I once stayed in another room of the house for close to 3 hours while my step-mother tried to give him a bottle. At the time I thought he was just very, VERY stubborn. Little did I know.


So life progressed, and AJ was mostly an easy baby. But he did everything late... just before the books said it was time to really worry. He sat up at 9 months, he army crawled until 12 months when he learned to crawl on all fours. He finally walked at about 16 months. Another odd thing was that he was a very large baby; at 3 months, the Dr. said he was the size and weight of a 6 month old.

However, between 6 and 9 months, I noticed he was getting very thin. At his 9 month check-up, he weighed LESS than he did at 6 months. So then the Dr. told me to put him on formula. I did (he still didn't take the bottle, we went straight to a sippy cup) and he drank it up. I'd been expecting a battle, but when my breasts didn't become engorged like they're supposed to, I realized that my milk had dried up! Oh the guilt! My poor baby had been starving! He stayed in the 25th percentile weight range for a about a year. He had been in the 90th before and his height still stayed between 75th and 90th. But he finally got back into the 50th later on.

So, when did I start to worry? Well, he didn't start talking when he was 18 months... not at all. He never said Ma Ma or Da Da or made any of the noises the way the books/Dr. said he would. In fact, in a way that's hard to describe, he's just never done anything the way they say it's done. He just marches to the beat of a different drummer. He'd had horrible ear infections for about 5 months, and finally got tubes at 22 months, so I thought maybe that was to blame. In the background of this story was the fact that I was in an abusive marriage with AJ's father. The day AJ got his tubes put in, he was sitting on my lap (still a little doped up from the surgery) and his father cussed me out for something I'd said that he didn't like. Well, this wasn't by any means the first time it had happened (despite me asking him to AT LEAST contain himself to when our son wasn't in the room), but something in me just broke. The next day, I told him to leave.

So AJ and I moved out, and then I really started to notice things. AJ was no longer responding to his own name. He was in his own world all the time, he didn’t respond to punishment when he acted badly, he didn’t speak ANY words coherently, although he babbled a lot. I took him to a developmental pediatrician. The Dr. noticed his developmental delays and rated his language skills at far below normal. The most troublesome was that his receptive language was even lower than his expressive language. At a little over 2, his receptive language was rated 13 months delayed and expressive at 9 months delayed. She diagnosed him with a mixed receptive/expressive language disorder and developmental delay.

Enter Early Childhood Intervention. They began coming to our house once a week for 20 minutes. By the time AJ was 3, he was still not caught up with speech (by any means), but they did not feel he qualified for more services. Most of his autistic traits seemed to have disappeared. He was now social and interactive. One of the ECI people told me that she had seen many red flags for autistic behavior when they first began seeing him. He basically acted like they weren’t in the room when they first came, didn’t respond to his name and was very unsocial, etc. They told me now that many of those behaviors, and their disappearance, may have been signs of trauma from living with my abusive ex-husband. My ex-husband was still getting him every other weekend (and still does). I noticed then (and still) that AJ seems worse when he comes home from these visits.

After a few months after AJ was 3 I still felt he needed help. AJ seemed like he wanted to be “good”, but things just bothered him and sent him spiraling out of control. In restaurants, he became agitated and would scream and cry and distract everyone until he finally just crawled under the table. I would just let him stay there, at least he was quiet. At daycare, he got in trouble from time to time for hitting. He hit me at home a lot too. He had been at that center since he was 15 months, so they knew him and knew that he was “different”. That was the only way I knew to describe him to new people. He was just so frustrated all the time. And so was I. Every change of activity was a battle, teeth brushing, hair cuts, nail cutting, face and hand washing, eating, EVERYTHING was a struggle for us. Sometimes we would just both cry together, neither of us knowing how to make it better, me feeling like a failure because I couldn’t help him.

4 months after he turned 3, I felt it was time to go back to the developmental pediatrician. While researching his behavior on the internet, I had found descriptions of something called sensory integration disorder. I looked at lists of symptoms and the lightning struck. I wrote down all the symptoms that matched his and took it with me to the doctor. After we spent an hour, and I watched sadly as he was asked to do or say all the things a 3 year old should be able to and he couldn’t do any of them. When we left, the doctor had diagnosed him with SPD, a mixed receptive/expressive language disorder, and developmental delay. She told me to contact the school system and try to get them to provide services, but in the meantime to get him private speech and occupational therapy. She gave me the names of a couple places in town and sent me on my way.

During that visit she had looked at me and asked what I planned on doing for him when it was time for school to start. I had no idea! I knew my baby would never survive kindergarten in his state, but I didn’t know what other options I would have. I was so hopeless about his future at this point that I asked her would he be able to live and function on his own someday? She told me yes and he could get married and have kids, he would be fine. I was relieved to hear that, but still thought college was probably not going to be in his cards. He was only a little over 3 and I was doubting his abilities at adulthood. I was so discouraged though, he still didn’t call me mama, and only had words for VERY few things.

Then we started therapy. In just two weeks, I started to see improvement. His OT introduced me to the picture schedule. I’d make a schedule for our morning and night routines, let him study it, and away we’d go. No fussing, fighting, screaming or crying. It was a miracle! Now we don’t even need the picture schedule, because he can COMMUNICATE! He’s learning what makes him feel better. Every night he asks me to squish him so he can get the deep pressure sensation he craves to soothe him before he sleeps. Sometimes during the day if he gets upset, he’ll let me squish him also. He has an imagination we never knew about; I have him on video from Christmas making up stories and singing Jingle Bells. It’s only been 4 months since we started therapy! The private therapy costs a little, but I don’t even care. Every penny is worth seeing AJ so happy and making progress.

I took him back to the developmental pediatrician for a 4 month follow-up. She asked him questions…he answered them. She asked him to do things… he did them! By the end, she told me that he was not even the same child she had seen 4 months ago. She said that this was the reason early intervention is so important, and that stories like AJ’s are what’s best about her job. He is no longer even considered developmentally delayed! I told her I was feeling that if he kept progressing like this, that he would be ready to start kindergarten when he was 5 and she agreed.

All in all, AJ is just an ordinary little boy now. He’s still a little behind, but there is so much going on in his little head that I never knew about before. He calls me Mama now and knows his grandparents names. He learns new words everyday. He can point out pictures in books and loves story time; he used to throw the book across the room if I tried to read to him. AJ still comes home from weekends with his dad a little off balance, but I feel confident that we can cope with that as well.

I just hope that any parent out there who is feeling the way I did can read this and see that there is light at the end of this tunnel. I used to get so frustrated reading about gifted children with SPD, and even posted about it on this website. Little did I know that underneath all his problems, AJ had a quick little mind in there. He still may not be a genius, but the wonderful part is, he just may! I have such high hopes for our future now. AJ is a beautiful, wonderful human being, and I’ve always known it, but the rest of the world just saw a whiny, crying, spoiled child. Now they can see what I have, that he’s sweet and charming, intelligent, imaginative and has a great sense of humor. Now they just see AJ.



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Oct 29, 2008
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Good for you!
by: Janet

Thanks for taking the time to write all of that. It must have felt good. Sometimes just sharing your story is helpful to you and as you can see from the replies ... to many others. It's so nice to connect with other parents in this way as it will all certainly benefit the children.

Perseverance is a very wonderful and powerful thing and how ironic as many of these children with SI issues persevere on things.

Peace and love,
Janet

Oct 26, 2008
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You gave me hope
by: Lovelykiaya

Aj is so much like my daughter Yasmeen, She is starting therapy this Monday. YOUR story gave me hope.. like life will change for the better. My poor Yasmeen is so frustrated and so overwhelmed when I take her out I just feel for her.

Sep 05, 2008
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Christian's story
by: Anonymous

Thank you for sharing your story. My son was diagnosed with SPD at 3 years only I read an article in magazine that discussed what SPD was. I had never heard of and of course my doctor just said it was normal. He too reach his milestone at the end of the normal range and he too was borne via c-section and was in the NICU for 2 weeks after birth. I was a first time mom and new something was wrong, but could not figure out what it was. He is now 6 and receives services from the school system and I bring him to private OT and PT due to hypertonia and he has learning disabilities.

It is nice to now from this network that there is hope for my son to grow and develop into a strong young man.

Jul 11, 2008
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THANKS!!!
by: Anonymous

Hi~

Thanks so much for sharing your story. My daughter has just been diagnosed with SPD. She never babbled as a baby and now at 18 months, she still does not have any words. She is in ST, OT and PT. She also has oral hypotonia.

It was so encouraging to read your story.

Jul 02, 2008
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Thanks
by: melissa

I have a two year old with mixed receptive expressive language disorder and Articulation language disorder. It is nice to hear about good times happening and that therapy does help. My son is gaining abilities they are just moving slow. Thanks for your story.

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