Is anyone there? I don't blame you if you aren't. After a year, 13 months, without posting, I'd give up on me too. But, if you're here now, HI!
This will be an all-text post, and probably a long one, so get comfy.
2011. Oh, 2011. 2011 just wasn't a great year for us. Our world turned upside down and became an overwhelming roller coaster of emotions, but we're better now, and ready to tell our story to you. Let's start from the beginning, shall we?
As you've read in prior posts, Peyton was such a wonderful baby, meeting all of his milestones, even excelling at some. By summer, 2010, he was talking up a storm in English and Spanish and just a very happy boy.
In October/November/December, 2010, Peyton's speech began regressing. His eye contact got worse. He no longer paid attention when we spoke to him. He was more interested in lining up toys, rather than playing with them. James and I were concerned.
Peyton got an ear infection after our trip to Lake Tahoe in December, 2010. When I took him for his follow up exam, I mentioned the speech regression to his doctor. (By January, his only spoken word was "Ha".) Dr. Glinder was concerned, but thought it could have been that the ear infection actually started on one of the plane rides on our trip to North Carolina. He wanted to wait until the infection was completely cleared up and ordered a hearing evaluation and speech evaluation.
The hearing evaluation, in February, 2011, was normal but there was still a little fluid in one of his ears, so we took him back in June, and he tested normally again.
The speech evaluation, in April, 2011, showed that Peyton had an 8-10 month receptive and expressive language delay. The speech pathologist referred us to our local regional center to apply for speech therapy, and requested that we have Peyton evaluated by a developmental pediatrician.
Dr. Glinder put in a referral for Lucille Packard's Developmental and Behavioral Health Unit, and we were scheduled to be seen in August (!). At Peyton's 2-year checkup, Dr. Glinder agreed that we couldn't wait that long, so he referred us to Dr. Sarah Cheyette, a pediatric neurologist who was able to see us the following week. Dr. Cheyette evaluated Peyton and diagnosed Peyton with autism. (Cue the emotional roller coaster). I'm not going to go into the details of our reactions to this diagnosis. I'm just going to cut ahead to his treatment.
In late June, 2011, Peyton started an Early Intervention program in San Mateo at Stepping Stones Center for Autistic Spectrum Disorders, Inc. It was a rough transition. For the first 2 weeks, he forced himself to nap during the two hour class (he stopped napping in April, 2011). But, by the third week, he got used to going and actually found that he liked it! He has made great progress during his time there. I am so thankful for all the teachers and therapists they have there. And, Peyton has made a really good friend too!
In July, 2011, Peyton started Occupational Therapy (OT) at Lucille Packard's Children's Hospital (LPCH) Rehabilitation Services. He loved his therapist, but after 12 weeks, she felt that he had made significant progress. When he started, he was developmentally at 12-18months, so about an 8-10 month delay. By the end of the 12 weeks, he was closer to 20-24 months, so she felt that he no longer needed OT.
In August, 2011, Peyton started one-on-one Speech Therapy also through LPCH Rehabilitation Services. In the 8 months that he's been seeing Meg, Peyton has gone from a basically non-verbal child to speaking in short sentences. I love Meg.
In October, 2011, James and I enrolled in Pivotal Response Therapy training at Stanford. PRT focuses on the child's motivation in order to get them to improve their behavior. In our case, we were targeting his speech and communication, so we used his motivation to get him to speak. For example, at the time, he was really into trains. So, if he reached for a train, I would hold the train and prompt him to say the train's name (Thomas and Friends trains). This has worked really well!
In January, 2012, Peyton restarted OT, this time at Stepping Stones, and he's doing well. His therapist, Janet, is working on his feeding and texture issues, as well as his gross and fine motor skills (which are pretty typically developed).
And, in March, 2012, we finally got approval through our Regional Center to start Applied Behavior Analysis therapy (ABA) with Stepping Stones. A therapist comes to our house and works/plays with Peyton for 2-3 hours per day. It's going great! But, now we're trying to figure out how to continue with ABA once the Regional Center funding runs out (on Peyton's third birthday). Sadly, James' company decided to stop funding ABA therapy in its insurance coverage. I could write another blog post on why ABA, PRT, or any other behavior therapy is essential in treating autism, but this post is getting long as it is.
In addition to the standard forms of behavioral treatment associated with treating autism, we have also taken Peyton to see a Defeat Autism Now (DAN) doctor. Since Peyton has regressive autism (his autism did not manifest until 15-16 months of age), we found a DAN doctor who specializes in regressive autism, Dr. Raj Patel. Dr. Patel is a family practice doctor who treats autistic patients, but also focuses his treatment on Lyme disease. As North Carolina is a “hotbed” for Lyme disease, we did agree to test Peyton for Lyme and he tested negative. Lyme disease is a growing problem, and there is a subset of the autistic population with Lyme induced Autism, as Lyme presents itself very similarly in children (loss of speech, developmental issues, loss of eye contact, etc). I have a friend who was recently diagnosed with Lyme disease, as well as her husband and their 2-1/2 year old son! I encourage you to visit her blog to get more information on her and her family’s therapy.
Peyton doesn’t have Lyme disease, we didn't think he could be, but he is autistic and the battery of blood and urine tests we subjected him to have all shown that he has some digestive issues. The DAN doctor has put Peyton on a slew of supplements including B12 shots which Peyton just hates. :-( Thankfully, we don’t think he’ll need to take all of these supplements forever though he may have to continue taking some for the rest of his life.
Now, we’re working with the Redwood City school district to transition Peyton from the Regional Center services. School districts take over the education services of special needs children at the age of 3. We’ve met with the district psychologist and are now waiting for them to do their assessments. As we live in California and education funding has been slashed (don’t get me started on that topic, either), we are not expecting Peyton to qualify for full services. We expect that he’ll only qualify for speech therapy. So, it’s up to us to provide him with the other services. Thankfully, I have found an inclusion preschool (a school consisting of typically developed children and some special needs kids, in our case a high-functioning autistic son) that has accepted Peyton to start after he graduates from his Early Intervention program on his birthday.
So, there’s the story. As you can imagine, Peyton and I have quite a full schedule! I can’t imagine how parents of other special needs kids can juggle services with both of them working. It really is a full time job! But Peyton is just a joy. He’s talking more, though still needs help, but is running, jumping, climbing and loves being outside. Indoors, he’s a wizard with puzzles (he can build 50 piece floor puzzles!) and loves to draw and paint. He loves animals and is absolutely obsessed with dinosaurs, his favorite being the ferocious T-Rex! We couldn’t be happier with what a wonderful and affectionate little boy he’s become.
It has definitely taken this long for me to get comfortable with telling everyone. Of course, our families have known and have been incredibly supportive. But, I just could not bring myself to update the blog. I could have written posts about local trips we’ve taken or the fun things Peyton’s been doing, but I felt that withholding his diagnosis from you would have been too difficult and I wasn’t ready to tell you. But, with April being Autism Awareness Month, and the new report filed by the CDC stating that 1 in 88 children (1 in 54 boys) in the U.S. are autistic, I felt that it was appropriate to share our story.
I’ll be posting some stories about trips we’ve taken to a local goat farm, the Happy Hollow Park and Zoo, and the California Academy of Sciences. And, if there’s enough interest, perhaps I’ll start a blog on early detection and treatments for Autism.
