Friday, November 27, 2015

Somewhere on the Spectrum. Written by Lara Martin

Somewhere on the Spectrum

I became a single mom at 19. My son was born 7 1/2 weeks premature. Devante was very healthy and was home in no time. By age 7 he had been diagnosed ADHD. I married just before his 8th birthday and was pregnant again the following year.

Caili was born full term in 2006. My beautiful girl! Caili had trouble latching on and was overall not a great nurser. I switched to bottles when she was about 6 weeks old and things got better. As Caili got older we started to see some quirky behavior and lots of fears. She became attached to a pacifier at about 15 months when she was teething. At about the same time I tried to move her to her own room. What a nightmare that was! She would play in there during the day but wouldn't sleep in the room. By 2 I had started to get concerned about her speech. I also noticed some hypersensitivity starting to show. Everything had to be just so. She hated loud noises. She had tantrums and melt downs that would seemingly start at random and last forever. She started potty training a little bit at 20 months. Then we moved and it all stopped.

 Just before she turned 2 1/2 I gave birth to Noah. I still had speech concerns so I called our area education agency and got an evaluation. The early intervention teacher came and said she wanted to work with her and could she bring the speech pathologist. I was thrilled! I quickly became disappointed. The speech pathologist said she was age appropriate. A year later during a hearing recheck, Caili had a 20 minute meltdown when she had to go in the sound booth. The audiologist asked if that was normal. When I said yes, she referred us to the AEA for another evaluation.
At the evaluation, Caili was found to have speech delays, fine motor delays and poor eye contact. She started special ed preschool within a few weeks. Caili could talk but she was hard to understand. She also began to refuse to talk to almost everyone except her older brother and myself. A few months after starting school, my sister in law came to me and asked if Caili was autistic. She had been concerned and did some looking. She believed that Caili fit enough of what she had read to talk to me about it. Within a couple days of that my pediatrician, while at my nephew's appointment, voiced the very same concern about my daughter. It took 3 long months to get into the center for disabilities and development for her official evaluation. Of course she chose that day to be talkative and social! I was told she was too social to be autistic so they never tested her for it. But she was diagnosed with fine motor delays, expressive and receptive language delays, phonological processing disorder, sensory processing disorder and disruptive behavior disorder. The OT said the SPD was to blame for the rigid behavior and autistic like behavior. She was convincing so I bought into it. It was also suggested that she had selective mutism. Once home I got her set up with speech and OT and researched SPD. All of a sudden, Devante's quirks that I had explained away as being because of his prematurity made so much sense! He has SPD as well. Caili was discharged from speech a year later and OT about the same time. She had weak hand muscles but I was told she was too young for them to work specifically on that.

In the meantime, I was noticing things about Noah. He started to develop his speech on time but sometime between probably 15 and 18 months he quit talking he was completely silent for a month except to cry. When he did start talking again he was impossible to understand. It took until he was 2 to get him screened. Caili's one speech therapist kept telling me to give him time. I listened for a little bit. But when his frustration level kept mounting I knew I had to act. He started speech therapy and early intervention at 2 years 2 months. He started OT at 2 1/2. Our AEA teacher didn't believe me when I started saying I thought he was autistic.

 In my heart, I knew. I took him to the center for disabilities and development just before he turned 3. We saw the same psychologist that said my daughter was too social. Noah played with his trains (he was and is beyond obsessed) while we talked for a few minutes. Then he was fine. When I wouldn't let him leave he melted big time! I was so glad to have him show his true colors. He ended up falling asleep from exhaustion. Even though she didn't actually get to do any testing, she had no doubt that he was on the spectrum. I was even asked to participate in a telehealth study where we would do some ABA therapy through video conferencing. At that visit he was also diagnosed with fine motor delay and weak hand muscles, expressive and receptive language delay, phonological processing disorder and sensory processing disorder.

A few weeks later Noah started special ed preschool. I applied for SSI and we were immediately approved. Caili started kindergarten that same year. She had lost her IEP at 4 because of some standardized test that said she was age appropriate. Some areas were at the very low end but still age appropriate.

 That school year, OT said they had noticed Noah "w" sitting and wanted him to see PT. They said he had weak hip muscles and he started PT. I had them see Caili as well because she sat like that all the time and was much more pronounced than Noah. Caili was diagnosed with weak hip and vote muscles and motor planning delay. Only 2 months of PT and she was done. One on one Caili does well, it's pulling it over into everyday things that she struggles with. Noah did a little longer in PT but not much.

 I still saw so many autistic traits in Caili. One day I read an article about girls on the spectrum. They could have written it with Caili in mind. I emailed the psychologist and expressed my ongoing concerns. She sent me a questionnaire to fill out and we scheduled another evaluation. The score on the questionnaire showed that she "flunked." At the appointment, she was given the ADOS test. In order to get an autism diagnosis, she needed to score a 7 or higher. She scored a 4. I was told she had Broader Autism Phenotype. A fancy way of saying she had autistic traits but not enough to diagnose her. That trip she was also diagnosed with a tic disorder and anxiety.

Noah went that same day for the cognitive tests that we weren't able to do the year before. He was upgraded from expressive and receptive language delays to mixed expressive/receptive language disorder. He was also diagnosed with a verbal cognitive deficit at that time. The psychologist said that because of the severity of his language delays, Noah might not be able to read.
Caili began counseling to help with her anxiety but no one believed me that she was still struggling developmentally. It wasn't until 2nd grade that the teacher saw her fine motor issues. Caili went back to OT for a few months and was again discharged. She still struggles.

I had her evaluated again in 3rd grade by a local mental health facility. That doctor agreed that she just wasn't autistic enough for a diagnosis. But he said her results were suggestive of ADHD. He also told me she has functional memory issues. Caili started seeing a new therapist that comes to her school. She says that some days, she sees the autism and other days she doesn't. She has some concerns about Caili's behavior. She's not a problem. She just retreats into her own world to cope with stressful situations. She also has a "princess" mentality and thinks that everything should go her way.  We are working on that.

Caili finally qualified for a 504 last year in 3rd grade. Most of it is to help with her sensory issues and anxiety.

 She's in 4th grade now and holding her own. She just started playing the violin and loves to read.
Noah survived kindergarten with lots of help. In first grade he was reading grade level books. Now he's in 2nd grade. He still has an IEP and gets help with math and reading and has a handwriting goal. He gets OT 2 times a week and speech once a week. I was just told that he will soon be discharged from speech as he is finally age appropriate! It took 5 years to get him there but we are there. My once silent little boy talks up a storm! And he's so smart! It makes me stop and almost cry when I hear him playing and talking out these elaborate ideas.

SSI recently reviewed his case and determined him to still be disabled. It was bittersweet. He's come so far but I know there's a long road ahead still. Keeping SSI means that he can keep getting the help he needs. My pediatrician though, thinks that Noah should be reevaluated. She thinks that because he talks so well now he must not be autistic anymore. Whatever! I didn't bother wasting my time trying to argue with her.

Anyway, I know that there are bumps along the road that I didn't get to. We've lived on next to nothing. Noah was recently diagnosed with low ferritin. (A protein in the blood that binds to iron.) He also developed a bald spot that was diagnosed as Alopecia Arreata. Noah had a lump on his chin that I fought for 6 months to get him his CT under sedation. Thank God that it ended up being nothing and the lump is going away.  And before much longer he should be finally getting his tonsils out.

There's still more but that's enough for now. Lara

Lara's Children

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