Monday, April 21, 2008

I haven't really told about Deklan's ASD so I'll do it now. Let me start with some history. Deklan is the youngest in a family of five. He has two older sisters, Dakota (Kodi) and Hayleigh (Hays). He is currently five years old. He's a good boy; very attached to mommy. He weighed 10 pounds and 1 ounce at birth which required an emergency C-section after nearly 17 hours of labor (water broken for about 14 hours) because his head was too big for the birth canal. No, there was nothing abnormal in the pregnancy - no diabetes or anything. The only thing that did happen was that I had a bladder infection at 22 weeks and had serious contractions until the docs got me on antibiotics (about 3 days). Other than that, I retained fluid like crazy. Thank goodness he was born in August because I couldn't wear shoes for the last three months of the pregnancy - not even to work (gotta love my boss letting me go without shoes, but I did wear socks). Deklan was a little blue and had to have oxygen for about 10 minutes - maybe less, I was pretty out of it by then. Deklan and Hays were both born with cataracts. They each had eye surgeries to remove the cataracts - this is removing the lenses, not laser removal. First, the right eye; two weeks later, the left eye. Hayleigh had to have a 3rd eye surgery to remove some filming of the right eye. All these surgeries were done by the time they were 8 weeks old. So of course he has vision problems.

It seemed like he never slept unless someone was holding him. My mom lived with us for awhile when my dad passed away (same time as the bladder infection). Mom moved to Oklahoma, where she and my dad were going to retire, when Deklan was one. She was a blessing. She would spend hours rocking Deklan because he would only sleep about 6 hours a night and only took a couple of 5-15 minute naps during the day. By the time he was one and 1/2 he wasn't napping at all anymore.

Anyway, we've had some difficult things happen since his birth. One being that, due to finances, we could not afford a day care/babysitter while my husband and I both worked - which we had to do in order to pay bills. We lived in Colorado at the time; we live in Kansas now. Anyway, due to the circumstances, he and my youngest daughter went to Oklahoma to live with my mom during Hays' kindergarten year. He was only 1 and 1/2 at the time. (And do you know that he even still remembers being at Nana's? Details that I sometimes have to ask Nana about so she can confirm them, which she does.) When he was two, almost three, we had to bring him back to Colorado for a third eye surgery. This time his eyes were crossing and needed surgery in order to relax the muscle of the eyes. He stayed with me after that. We were already planning on moving to Kansas by this time. That's not what set Deklan apart, that's just to let you know his background which I will probably refer to during the rest of this.

Here's where Deklan shows signs of being different... We sometimes thought he had a hearing problem because he wouldn't respond when we would call his name. He explored everything and loved to climb. There were many times we would have to pull him out of the window or down from the couch. He started pulling up and walking with use of the furniture when he was 7 months old. He wanted to touch everything. (We assumed this was due to his vision problems. We had experienced that with Hayleigh, but not to that great degree.) When feeding, Deklan would grab our faces and pull us to him. Again, assumed vision problems. (I should say that, due to his size at birth and difficulties after my C, he was bottle fed. He was always hungry - he ate 6 ounces in one setting when he was only three days old.) Anyway, he started baby babbling from the time I can remember. I remember his first word was DA-DA, but can't remember his age. Although he did eventually develop a very good vocabulary, the babbling continues on. He did and still does sit and talk to himself for hours - sometimes just making sounds that don't make sense to anyone but himself. He was a great little one. He didn't require any entertainment. He could do that himself for hours at a time and we'd never hear a cry from him (babbling yes, crying no). I thought he would never be potty trained. He still has accidents but we've learned to deal. He always wets the bed and has to wear pull-ups at night. It's the bowel accidents that are the hardest to deal with. Now, at this point, I have to clarify something. I had no idea that anything was wrong with him. I knew he was different but I only had girls to compare him with. My family started referring to his "quirks" as "Deklanisms". The only thing that irritated me was when I'd talk to him and he'd seem to ignore me. When I got his attention - usually by walking in front of him or getting down eye to eye - he always had an answer for me. There was no need to even repeat the question.

"Deklan, do you want some milk?"
No answer/acknowledgement.
Getting down to eye level in front of his face, "Deklan, I asked you a question."
"No Mother, I do not want milk." or "Yes Mother, I do want milk."

(For two years I was always Mother. Now it's usually Mother but sometimes he slips in with Mom and, on rare occasions, Mommy.) One other thing that irritated me... if I was busy doing something else and he wanted to talk to me, he would grab my face with his hands and bring my face to his to talk. I don't know if he was just mimicking me - I didn't grab his face, but I did get in his face so he had to look at me when he was ignoring.

This pretty much brings us to last year. We had moved to Kansas and Deklan went to Head Start. He was in a pre-K program and went from 8:00 a.m. until 2:45 p.m. Monday through Friday. He loved it really. Anyway, like I said, I never realized Deklan was different from the majority, just different from his sisters. I knew that Deklan had difficulties adjusting to certain things. I knew that he didn't care for unexpected things/events. I did realize he had what I always referred to as minor meltdowns. I didn't realize that was a very real term for a lot of other mothers. I also knew that Deklan was slow. Slow making decisions; slow getting in line; slow to finish eating; slow. His teachers were awesome. They pulled me aside one day and said,
"you know, we would like to have someone from the educational co-op come in and evaluate Deklan. Some of the behaviors he exhibits is not really normal for a child his age."
"OK - what do you think it is?"
I knew he was very intelligent for a 4 year old, a little eccentric maybe, so I didn't think there was a mental problem to worry about.
"We think he may have Asperger's syndrome. It's a form of Autism."
Sound of a mother's breaking heart here.
"Autism? Isn't that a severe mental/emotional disorder?" Forgive me here. My only insight into Autism was the movie Rain Man years before.
"No, it actually cover a large range of spectrum disorders. Asperger's, for example, is a very high-functioning form."
"Ok - what do I need to do?"

Thus began our journey. Since this is such a long post already, I will pause at this point and continue at a later date.


cbh said...

i am not a parent but a teacher who often wonders what it must feel like as a parent to hear this. i just posted about what takes place when a child to be diagnosed with any kind of label. i'd love for you to stop by my blog and comment.

mollyalexis said...

Wow, that was a moving post. It's great how accepting you were of his quirks. That's exactly what I thought about Parker, that he was quirky. I guess people really don't get quirky until they are older, lol. Congrats on the iep!