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February 4, 2003
AUTISM 101
I decided to list the main things that produced Jaida’s diagnosis. The following is a summary of the report from her evaluation in the developmental clinic in July of 2001. At the time of this evaluation, Jaida was three years and four months old or 40 months old. The tests that were used were the Developmental Activities Screening Inventory- Revised (DASI-II), Atypical Behavior Rating Scale (ABRS) and the Vineland Adaptive Behavior Scale (VABS). Now, if you’re not confused enough I’ll give you the scores she made on each one.
The DASI is a test that measures non-verbal development for children aged birth to 60 months. It uses a variety of colorful manipulative materials with high interest appeal to young children. Jaida obtained a score of 75 that ranked her in the below average classification and gave her a developmental age of 30 months. The basal (baseline) was established at 18-23 months, with numerous successes at 24-29 months and scattered successes at 30-41 months, prior to establishment of a ceiling at 42-47 months. Jaida’s highest-level successes involved manipulative activities such as building a tower of eight blocks and stringing four beads and an early language activity requiring her to match ten pictures to words.
I filled out the questionnaire that completed the ABRS and my answers were as follows:
Bangs objects
Points to indicate needs
Unusual interest in water
Repetitive speech (Echolalia)
Misuses pronouns (e.g., says “You want a cracker” when she means I
Does not play appropriately with toys
Uses little or no functional speech
Utters vocalizations which have no meaning as if they were real words
Exhibits bizarre, compulsive behavior (eats soap suds)
Fascination for certain objects (bread ties, string)
Unrealistic fear of certain objects
Often appears not to hear, but clearly does at other times
Enjoys playing with materials that make a crinkly sound
Whines, cries or screams when desires are not rapidly met
Unusually picky eater (eats a few foods and tastes change quickly)
Is often noncompliant (seems unaware of requests)
Prefers to be left alone
Has “special” locations where certain possessions must be kept
Fascination for certain musical toys or music
Monotonal or so-called “wooden” speech (little or unusual inflection)
Performs some skills at age level and others below age level
Switches from normal speech to glottal (deep, throaty) speech
Spontaneous use of learned skills lags behind the elicited performance of the same skills
Makes peculiar sounds inside the mouth by gritting teeth or clicking tongue
Tears tissue or other paper into mall pieces perseveratively
Saves or hoards materials which have no apparent value
Does not eat everything on plate; asks for more before plate is empty
Memorized and recites TV commercials or advertisements
Walks on tiptoes
Howls or squeals without sufficient reason
Over-reacts to changes in the immediate environment (moved chair, etc.)
Before I looked at this questionnaire, I had no idea all these things together put Jaida in any specific category. I just thought it was a collection of odd behaviors. She still memorizes TV ads and exhibits some compulsive behavior. She also still has a thing about where certain toys must go. Those are really the only ones she has left that I can tell.
Finally, the Vineland (VABS) scores gave a summary of Jaida’s adaptive skills in the areas of communication, daily living skills, socialization and motor skills. I answered multiple choice questions that were asked by a behaviorist. In the area of communication Jaida’s score was 67 with an age equivalent of one year and seven months. In daily living skills her score was 60; age range of eleven months. In socialization her score was 63; age range of one year and three months. In motor skills her score was 75; age range of two years and seven months. Her average was a 67 which yielded an age range of one year and seven months.
The director of the clinic went over each area of the testing results with me and I took a family friend, Mrs. McCall that used to work in the school system as a psychologist. Years later, she had been my Mom’s boss at her last job with the university. She helped me understand what all these numbers meant and give me some idea about how to help Jaida progress. The summary also included the staff’s suggestions and recommendations. One of which was getting Jaida into the preschool program for special education. Since it was summer and the state and al counties were in proration (read: BROKE), we would have to wait until September. Knowing all this in advance, I paid out of pocket for this evaluation myself. I definitely did not want to wait until September to find out what I already suspected.
After we left, Mrs. McCall asked me lots of questions about Jaida’s early behavior as a toddler and infant. We talked about what to do next. She said she had a friend that was director of autism services for the state and she would contact her on my behalf. I was grateful for her help but overwhelmed at the same time. Even though I knew what the final result would be, I was not at all prepared to hear someone speak the word autism out loud in reference to my child. I cried all the way back to work. As I drove through downtown and looked at all the people going about their day, it struck me that my world was closing in and they had no idea. I was just another woman in a car that they had to dodge to cross the street.
I gave everybody a copy of the report and let them read it for themselves. I was too weary and shell shocked to explain. My parents were sad and my Dad went into immediate denial. My in-laws didn’t say a word. They pretended like it never happened. My MIL in particular acted like she could snap Jaida out of it if she talked to her loud enough or repeated her requests frequently enough. The clinic suggestions of positive reinforcement and praise seemed to be lost on her. I wonder if she even read the stupid report at all. We muddled through the rest of 2001 and adapted as best we could. I think I shut down emotionally for a while. Jarod was not well and I could only handle one problem at a time. We’ll get to the treatment phase next time.
LIVING WITH YOUR MOTHER CAN BE HARD
Lately there has been some tension between Mom and me. I get the feeling she is feeling taken advantage of. Although I do my best to keep all the housework caught up and out of her way, she still finds things to do. Mostly, it’s the dinner dishes. If I cook something, she usually comes right behind me and makes her dinner. Most of the time I go straight to bathing the kids after we finish dinner. I don’t intend to leave a mess for her to clean up but I guess it seems that way. I have no shame about using my dishwasher but she thinks it’s a sacrilege.
Then there’s the issue of the kids. In the evenings when I get home it has become obvious that she needs some alone time. I try to keep Jaida and Jarod from following her to her room. What usually happens is one of them will sneak off and knock on her door. Even if it’s locked, she will get up and let them in. If I’m eating and their finished I often lose one or both of them. Then I hear the screams from them gleefully tearing up her room and Mom trying to regain order and I have to go retrieve them. She’ll often say it’s okay, they can stay or something similar. But the look on her face tells me otherwise. I know she must feel like she’s raising children all over again and I have tried to prevent that. I think that’s the real reason she wants to move out when Lambchop comes. To be honest, I can’t say that I blame her. I just don’t know what else to do.
This problem is compounded by the fact that Jarod has become a holy terror in the last month or so. He drives Mom crazy during the day; throwing things, taking Mom’s reading glasses or the remote and running with them. For this reason I started searching for a preschool for him. Montessori can’t take him until summer at the earliest and I don’t think he and Mom will last that long. But I didn’t want to throw him into a full day program either. Luckily I found a church based program that only lasts from 9:00 to 1:00 every day and I think that’s perfect. I can pick him up on my lunch break and he can take a nap when he gets home. Hopefully that will give Mom a much needed break. I think Wednesday through Friday is plenty since he has OT on Mondays and Beth comes on Tuesdays.
We went to visit yesterday and he seemed to like it. The teachers liked him and they all thought he was cute. He impressed them by playing with the toys and then putting them back where he got them. Mom didn’t understand that I intended to let him start this week and now I think her feelings are hurt. I can’t win. Its obvious Jarod needs more stimulation and a group setting may help his speech and his eating habits. I think he must be bored to tears at home all day and he never gets to play with anybody but Jaida. I just want everybody to be happy but it looks like that goal may be out of reach.
LAMBCHOP AT 9 WEEKS
I mentioned last week that I had to buy maternity pants. It looks as if maternity underwear may be next. I don’t look any bigger (I think) but my undies are fitting differently. I can feel my uterus and I think it must have risen out of my pelvis already. All the books say this isn’t supposed to happen until week 12 or so but I guess subsequent pregnancies are quicker to pop. My next appointment is Valentine’s Day and I can hardly wait. I know that seeing the heartbeat was a good sign but I will breathe a lot easier once I pass the 12 week mark.
I’m working on a babies online page for Lambchop and I promise to post the link when I’m done. I hope to update it with belly shots every few weeks and post the ultrasound pictures. I only have one u/s pic that barely shows the little embryo and it’s dark and grainy. I let Steve take a picture of me with the digital camera last week that made me look extremely pregnant. I think it was the shirt I had on. I may not post that one just yet. Well, enough rambling for now!
Until next week,
Kim, Jaida, Jarod & Lambchop
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