I was told to expect a follow up letter with suggestions for helping Clara-Bear and with resources for the next step. As difficult as it was to see the word "Autistic" in writing, I was still eager to start this new phase of Clara-Bear's journey the right way and dove into the diagnosing Psychologist's letter.
That letter was not our starting point. The detailed description of the session did not include my concerns about emotional trauma, the Benadryl, or Clara-Bear's motor delays. The Psychologist said she found it unusual that Clara-Bear demonstrated imaginative play. I guess Clara-Bear didn't fit neatly into that box!
She included a few of the comments from Clara-Bear's teacher's letter. I still don't understand why she did not request more input from Clara-Bear's professionals. She could have given them a checklist to make data collection and report writing easier for her.
The follow-up "help" I had been eagerly awaiting? Thirteen suggestions for therapeutic interventions. The suggestions were general things that were already being done and are probably included in most EI programs.
Reading the letter was an ivory tower moment for me. Did she really think telling us to encourage eye contact was the missing magic bullet? Three years of PT, OT, EI, and Speech and nobody else thought of this? That as concerned parents, we hadn't already been trying this? That I couldn't find that suggestion on every Autism support website and in every book out there? I wish it were that simple! I hope she wasn't patting herself on the back too much for that one.
There was a list of thirteen books for me to read. I could have walked into Borders and randomly picked a book off the shelf and the odds of it relating to my daughter were as good as the odds of me finding one from the suggested reading list.
Six websites for me to visit. I could do an online search and start randomly reading Autism website after Autism website until I found one that resonated. Follow-up was nothing but a form letter. We were left hanging with no one to answer our questions:
• How severe is her Autism?
• What's the unique first step for Clara-Bear, based on the observations made?
• Do she need a Psychologist, a Psychiatrist, or a Behavioral Interventionist?
• How long until Clara-Bear needs re-evaluation?
• Does it matter that she retreats instead of acting out?
• What behaviors are most destructive?
• What are the signs that she's getting worse?
• Am I supposed to do things differently than other parents because my daughter also has Down Syndrome?
• Am I supposed to schedule appointments at each of the local resources in the letter, or pick one?
• What do I ask for when I call?
My husband and I decided to take the attitude that no matter how we felt about the diagnosis, Clara-Bear had always responded well to Autistic interventions and we just needed to step up our game. I would work harder for Clara-Bear, and focus on behavior management. She would qualify for more services through her IEP. Time would heal the emotional trauma and we would get a better idea of where Clara-Bear was at. In the end, Clara-Bear would win.
Her teachers and therapists were all shocked by the diagnosis and disagreed openly with it. I love them for defending Clara-Bear and for pointing out the ways she was not lost to Autism. Yet there were times I felt I had to push them to accept that we needed to work with the ASD diagnosis. Her behaviors and education needed to be approached from a sensory and behavioral point of view because it made a difference for her.
I didn't realize how much anger I was carrying from this until last summer. I was attending a lecture on behavior at a Down Syndrome conference. I became "that" mother. You know, the parent who is making her questions emotional, angry, dominating the floor, it's all about her child and situation? That was me. It all came out!
An audience member worked in the Behavioral Clinic at Vanderbilt Children's Hospital and approached me after the lecture. I had no idea there was a place I could take my daughter to get the personalized guidance and planning we had needed all along. We were not referred to them even though they were in the same building as the Psychologist and accepted our insurance.
It was now 10 months after the diagnosis. A lot of changes had already been made, but we went to their Behavioral Therapist because I felt I had to after my public display of anger for not being offered better help.
It was worth it! I learned which of the resources in the letter could help us and which could not. I got some good tips. I also gained a pro-Clara-Bear ally who I can contact anytime. As embarrassing as the memory is, I would never have learned where to go for help if I had not gone to my angry place during the seminar.
We did encounter another low point when I called our Regional Intervention Program and tried to get help solving a huge behavioral problem - throwing at the table. Clara-Bear was not making any progress in OT or with self feeding because nothing stayed in front of her long enough to make a difference. She could not make the step from infancy to toddlerhood because the throwing was out of control. We were turned down because of the dual diagnosis.
Being turned down by RIP broke my heart for my daughter yet again. Why couldn't people see past the diagnosis to the person? How could somebody think she has no potential, or that she is isn't worth the effort? How is she supposed to have a future if I have to fight to get people to believe in her?
This rejection led to one of my most empowering accomplishments as a mother. I had to create my own behavioral modification program. It was an awful 1 1/2 months, but we did it! Clara-Bear proved that she can learn, she can change, she can overcome. If she has the right approach.
Since the throwing is no longer chronic, Clara-Bear has made quick progress in her most delayed areas. The added benefit has been that she has freed up energy and attention for learning. She knows her alphabet, shapes, colors, and is working on counting. The answer was in the approach. I don't know if I would have ever researched ASD behavioral interventions to the depth I have if she had not been formally diagnosed with Autism.
Using an Augmentative and Assistive Communication (AAC) Device is another benefit of not being a thrower. The Dynavox has been a huge eye opener for us. We can do an activity with Clara-Bear refusing to look, resisting, or flitting about like an 18 month old and totally making me nuts. Then I can quiz her with the Dynavox and she'll answer every question about what we just did. She was learning the whole time! It makes me wonder how many Special Needs children are capable of learning but are written off because of language and motor delays.
We've also learned that her chronic medical needs were masking Sensory Issues. Her self stimming behaviors have improved as she has become healthier. With medical causes for behavior out of the way, we finally know what kind of Sensory Diet she needs. Gross Motor and Fine Motor weaknesses still get muddled up with Sensory, but those will work their way out as well.
Clara-Bear loves to dance, and I just realized the other day that she will start spinning and flapping if she's listening to regular music. However, she will listen more closely and follow directions instead of stimming if it's a directed movement song. So now, I have a new mission - find her a toddler CD that is all directed movement. (Leave a comment if you know of one!) I love that moment when an opportunity to steer her in the right direction pops up. It feels like a blessing!
Just as time is restoring Clara-Bear’s trust in medical professionals and healing her emotional trauma, time is healing Mama’s anger. I'll never be happy with the way the diagnosis was handled. But the experience has made me a stronger advocate for my daughter. That's a huge blessing that can't be denied.
I'm at peace with the Autism diagnosis as long as I think of it as a a street sign pointing us in the direction Clara-Bear needs us to go instead of a place where she's trapped. And I am so proud of my amazing daughter and so excited for her future that my heart could burst!
Next A call to Autism/Aspberger's bloggers: What advice would YOU give a parent who has just learned their child has ASD?
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