Wednesday, April 23, 2014

Julianna, Part 4: The Facing Reality Phase

After reading the book The Out of Sync Child, I followed the author's advice and brought Julianna to an occupation therapist for evaluation. This was a big step for me. I was finally willing to do the right things to help Julianna, whatever that meant I would learn about her. No more turning therapists away, or entire regional centers. It was time to find out what was going on, and what could be done to help her.

Unfortunately, I was not impressed with the evaluation by the OT. They were very rushed, and impersonal, and didn't seem like they were trying to help. Then a good friend from church told me about the school district, and that I could have her evaluated by them. I didn't even know this! Why didn't doctors tell me this? In case no one has told you, your child can be evaluated by the school district at age 3, when they are no longer eligible for early intervention. I was so excited to call them and see what they could do. It was at the end of April, 2007.

Unfortunately again, I hit another road block. The school year was almost over, and they could not schedule anything until the next school year began. This meant I would have to wait 4 or 5 months before I got any help. I had already burned my bridges with the local regional center, so I was pretty sure I couldn't go to them. I didn't want to wait anymore...I was ready to get things going for her. But there was nothing I could do but be patient. Patience has been a huge part of this journey with her.

So we got through the summer, had another failed potty training attempt, and looked forward to September when Julianna would be officially evaluated by our local school district. The day finally came, and I was told to meet the "team" at a preschool site. I was greeted by the district psychologist, speech therapist, and a few preschool teachers. They had me fill out some questionnaires about Julianna while they just watched and observed her play with toys.

Once I completed the tedious paperwork, I was able to talk with the speech therapist and psychologist in a way I've never been able to with doctors. They wanted to hear everything about her history, her current behaviors, her milestones, and they just let me talk, for as long as I wanted to. It was so refreshing to have people listen to me as I described Julianna. And talking about her made me feel so much better--I was no longer trying to hide anything. I was ready to face whatever they thought was troubling Julianna, however challenging that may be. I felt like I wasn't alone anymore, I had people who were going to be there for her now, and it was a huge relief for me as a mother.

Those of you just starting out, please don't make the same mistake I did. Don't suppress or conceal those little feelings you have. Get help, right away. Don't wait, don't try to pretend everything is okay. If I could go back, I would never have done the things I did. I would hever have turned away wonderful therapists, or waited until she was 3 1/2 to finally admit to myself that something wasn't right. I try to rationalize my past, saying that I was too busy with Blake's new health challenges and just couldn't face any more. But really, I was afraid. I felt safe keeping it inside. But what I realized in that first meeting with the school district is having the opportunity to talk to professionals about your child is one of the greatest things in the world. Having a team working with your child makes you feel like you don't have to do it alone. So seek out help, as soon as you have those feelings. You will not regret it.

Of course seeking out help meant I had to face reality: I had a child with special needs. I had to learn how to accept this, which does not happen overnight. I spent many nights crying to sleep, many days worrying. After the evaluation, I went to my very first IEP (Individualized Education Plan) meeting with the team, and got to hear them share what they found. Here's what I had to face: low muscle tone; difficulty sitting still; sensory issues; low percentiles in locomotion and manipulation; needs physical therapy, speech, and occupational therapy once a week; low percentiles in every category (communication, daily living, socialization, motor skills, adapative behavior). Basically, she had global delays. But the CARS (Childhood Autism Rating Scale) that they had me do showed her in the 22 range, which was non-autistic.

All these things I learned about Julianna were eye-opening. I had no idea she was so delayed in so many areas. I told them that previous neurologists had ruled out autism, as well as her former physical therapist. I didn't want her to have autism--I was scared of that word. During that time period, all you heard about autism was negative, scary, and hopeless. So to me, having delays meant she just needed to catch up. And now I had a team that was going to do just that. She was also qualified to attend the special day preschool in our district, where two other boys from church already attended. She rode the bus to and from school, received her therapy there, and things were beginning to look up. I had the help she needed...for now. What I have found with having a special needs child is just when things seem settled, or fine, they suddenly aren't.

First day of preschool, October 2007


  1. I'm loving your blog, your outlet. You would be amazed with how many 4-5 year olds we get in the spring because parents are realizing that their child just isn't ready for Kindergarten. I can only dream of the pissible progress the child could make if they were brought to us when they turn 3. I hope you reach parents that are in your shoes. Early detection and education really are key. I miss Julianna, but it seems like you guys are doing well :)

    1. Thanks, Shawna. I really hope to reach people. Feel free to share with anyone you know.:) I want to help as many people as I can.

  2. I totally recognising what you are writing. I can remember joking that I wouldn't be surprised if R, my eldest, had a form of Autism as a 2.5 year old (now 23.5 yrs old) but he could double numbers over 1000 and rhyme all sorts of words. He even learnt to read by the time he was 3. BUT he also would lose himself in a world of his own and would hyper focus doing things ... and good luck to you if any of his food touched on the plate. He was finally assessed at the age of 7 .... but not for without me saying mant times there is something going on here. It turned out he is basically a text-book Aspie.