My Piece of the Puzzle (1)
Each day and each experience when living with a child with autism is different. Each child with autism is different.
For those who don’t know what autism is:
Autism is a developmental disability, which is defined as a syndrome. A syndrome is simply a mix of signs or characteristics that can be used to show a particular condition. Autism is a lifelong condition that combine both developmental and behavioural features.
Translation: Autism is a series of developmental issues in socialization and communication that affect each person differently.
The Journey to Diagnosis
In my house, every single day is different, and every single day is an adventure. My daughter is 5. She was diagnosed as being on the autism spectrum when she was 3 years old. But I knew when she was a baby. I really do not know how to explain that other than that I just knew. She never made eye contact. That social smile that parents get all excited about just really wasn’t there.
But the doctors didn’t listen. She was in a children’s hospital at 3 months old because of suspected seizures, and that is still a concern and still something that has not been diagnosed. The pediatrician thought the development would catch up. It was not until she was almost 3, still not really talking, and barely walking, when the pediatrician noticed on our 5th head injury follow up that Lauren was making repetetive hand movements. Finally we got a referral to a new neurologist and early intervention for evaluation.
I hear a lot of people say that the autism diagnosis comes like a crushing blow. To me, oddly, it was a relief. It was validation. I knew from the beginning that that was what the answer was going to be. I had spent nearly three years researching, talking to family, reading everything I could. Asperger’s syndrome is prominent in a few other family members, so I knew the genetics were there.
On genetic screening, Lauren came up as a carrier for fragile X syndrome, which means either her father or I carry the gene as well. We still haven’t figured out what the implications of that mean. But finally we had started to get some answers.
We had a battery of tests. MRIs, EEGs, brain scans. There were a million forms to fill out and behavior assessments. The entire process took nearly a year, but in the end, the answer was exactly what I had suspected. But there was more that I hadn’t.
What Comes After the Diagnosis?
So now we had a diagnosis, an answer. Lauren was classified as autism spectrum disorder. She was not classified as the milder form, Asperger’s syndrome, or high functioning autism. She is not particularly low functioning, either. She is moderate severity autism. She may always need a little bit of help, but anything is possible. They also diagnosed ADHD, oppositional defiant disorder, and OCD. She has a severe pragmatic language delay. She lacks independent and self care skills.
The next step was meeting with the school district to get her qualified for services. This was another 4 months of evals and screenings. But after all was said and done, she qualified for a full day program 5 days a week with transportation in a regular school, where she receives physical, occupational, language therapy and aquatherapy and special education instruction. She started school at 3-1/2.
Fast Forward to Now
Lauren has actually thrived in the educational environment. We had to make the difficult decision at 4 to medicate her ADHD and to put her on medication for sleep because she completely STOPPED sleeping. Children with autism and ADHD absolutely thrive on structure and routine, though and this has been critical for us. Everything has to be at EXACTLY the same time each day for her. And EVERY Friday we have to have spaghetti for dinner, her favorite food. If we don’t, all hell breaks loose. Trust me, the atomic bomb has nothing on this girl’s meltdowns.
Academically, though, Lauren actually functions at a 1st grade level and she is only in Pre-K!. She can read, do simple math and even basic word problems. She can tell you the path food takes through the digestive tract and even understands the basics of American Sign Language and Spanish, and has been working on teaching herself Mandarin. The languages are all self taught. These are some of her obsessions. She loves to learn. She just prefers to do it alone. She spends a lot of time on learning websites on her iPad, which has been a godsend when an anonymous angel gifted it to her last year. She makes videos with it of herself doing fun things, and sometimes she lets me share them.
She is our light in the darkness, my piece of the puzzle. Each week or two, I will come back here and share a bit about our adventures. I want the world to see that an autism diagnosis does not mean that your child is damaged. I want to show that this just means that you have to learn a different way of doing things. I hope you enjoy getting to come along and join in our adventures!
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