Peyton's 3rd Birthday Party

We chose to celebrate Peyton's birthday at his favorite place: Happy Hollow Park & Zoo in San Jose. My cousin Darlene flew up on Friday to bake Peyton's special dinosaur cake, and I must say that it was a masterpiece - inside and out! Not only did she draw the dinosaur faces on the bottom layer free hand while looking at pictures for inspiration, but she brought dinosaur figures to be on the top landscape layer. The cake itself was a yellow cake with a fresh peach filling and sliced strawberries with a non-dairy whipped cream frosting. Delectable!

 

 

Peyton and his little buddy, Naoki, played "Stop and Go" for a little while. Naoki is Peyton's best friend from Stepping Stones. He adores Naoki and his baby brother, Koki, and James and I adore his parents too!

We arranged for Happy Hollow's signature character, Danny the Dragon, to come and visit the party. Peyton was so happy!

He brought a present for Peyton, a Danny the Dragon t-shirt.

We took a couple group pictures with some of Peyton's friends. We had a great turnout. In all, there were 36 people in our party. It was wonderful to see all of Peyton's friends come to celebrate.

Peyton wanted to see what "really sharp teeth" feel like. Of course, these were made of felt, so I think he was confused.

Danny played Peekaboo.

Peyton found Danny's tail!

Then, the fun really started. Dancing and games! They sang "Head Shoulders Knees and Toes", the "Hokey Pokey" and played "Freeze Dance". Everyone had so much fun!

A duck came to see what was going on too.

But, it didn't stay for long. It took off so quickly, that I felt as if a wing could have cut my ear off while I took this picture.

Danny tried to get everyone to play "Hot Potato".

While they were playing "Freeze Dance", Peyton started asking Danny the Dragon to chase him around the party area. I owe the person inside the costume a big tip for indulging Peyton by running around in that giant suit in close to 80 degree weather, FOUR TIMES!

Danny ended his visited (20 minutes later) with a round of Happy Birthday and cake. Peyton was excited to see his dinosaur cake.

But, he didn't like it when the frosting ended up on his hand. My little perfectionist. :-)

Danny posed for a great picture, but Peyton was still not pleased about the frosting hands.

Peyton perked up when we sang Happy Birthday.

And, he was so happy with the candles!

Peyton gave Danny a big hug when it was time for him to leave!

Our friends the Gumberts came with their daughter Emilia and a little brother due in two weeks! We were so thankful that they came.

Peyton's teacher from Stepping Stones came to the party with her daughter, Bella. She gave Peyton a Dinosaur Train card that sings the theme song when you open it. He loves it!

Peyton's friend Mia gave him a big hug before she was packed up to go.

Peyton showed Mia his card.

He was shy when Irena said goodbye to him.

My friend Jill from high school has a beautiful daughter, Paloma. Isn't she just adorable?!

After the party, James and Peyton went on a couple rides while my parents, Darlene, and I cleaned up the party and packed the car. There's a little roller coaster at Happy Hollow. James said they rode it five times! My little daredevil. :-)

I went back in, after packing the car, to return a cart our party coordinator had lent us to move out everything, and I ran into James and Peyton by the carousel. We waited in line for one last ride and Naoki's family was in line behind us. We were able to get them to ride together, and his mother Satoko, put his baby brother, Koki, on a lemur behind us. Beside horses, Happy Hollow's carousel has endangered and extinct animals to ride on. Peyton chose to ride the Bengal tiger.

Naoki's Dad, Aki, had fun with Naoki!

Naoki really liked all the fun stuff to see on the carousel!

Peyton and Naoki finally smiled for a picture together. Peyton adores Naoki!

It was a long day, but I wouldn't have changed a thing. It was a fun party, and I hope it will be one of Peyton's favorites!

Peyton's IEP and THIRD Birthday

I can't believe our little boy is growing up! Peyton turned three last week. And, what an exciting week we had!

Peyton's services with our regional center only lasted through his third birthday, so we worked with our local school district to evaluate him for an Individualized Education Plan (IEP). This is a process that takes about 60 days, in which we meet with the school district, give them all available information and evaluations, and then they do their own evaluations. After all the evaluations, we have our IEP meeting. 60 days seems like a long time but, being the end of the school year, families with kids who turn three over the summer also try to get their IEPs completed so that they can start services at the beginning of the next school year. This means that instead of having to process the kids with May birthdays, the school district also has to process kids with June, July, and August birthdays.

Because of this, our evaluations started the week of April 30th. A psychologist went and observed him at Stepping Stones in his Early Intervention program one day. Then, I took Peyton in to be evaluated by the psychologist, the Speech and Language Pathologist, and the Autism classroom's teacher.

To be the mother of a special needs child can be self polarizing. Peyton did extremely well at his evaluation at the school. A little too well, actually. He blew their socks off. The autism classroom teacher was impressed by his knowledge of colors, shapes, puzzles, counting and his alphabet (he can also read numbers and letters). By the end of the hour and half session, they happily told me that he would not qualify for Special Day Class, but the Social Skills class would probably be good for him. The Social Skills class meets two days a week, two hours per day. As there were only six session left in the school year, he will start in September. Since preschool is not required for all children (don't get me started on that), the school district also will not help pay for a private inclusion preschool which we enrolled Peyton in after his Early Intervention class ended. We are actually lucky that our school district has a Social Skills group; others are not so lucky and their kids end up without any services.

On Wednesday, May 8th, Peyton went in for speech and language testing. Since he had already taken the standard language test for ages 0-6, known as the PLS, as part of the Stanford PRT study, she was unable to retest him that day. He did qualify for articulation therapy. He tends to add extra sounds to the ends of his words, or drops sounds from other words, making his intelligibility difficult. There is another language test that can be given, but the child must be three when they take it. Seeing that Peyton was two years, 364 days (it being a leap year and all) on that day, he was unable to take it. We went back for that test (the CELF test) this past Friday.

In the State of California, a child must qualify at most (MOST) 7% on the language test in order to qualify for speech therapy. That's 7% out of 100. The average child should score in the 50th percentile. So, the 7th percentile is very low.

Peyton scored in the 16th percentile in the standard language areas and in the 37th percentile in expressive language. The therapist apologized for not being able to score him higher on some of the questions. I almost laughed out loud. I really wish I would have told her that she shouldn't have accepted many of the answers he probably did give her (see what I mean about being self polarizing?).

We had our IEP meeting on Peyton's birthday, May 11th. As we expected, Peyton only qualified for the Social Skills group and 30 minutes of Articulation Therapy a week. The language testing would tell us if he would also qualify for extended speech therapy, which now we know he will not.

Peyton is doing amazingly well. In the past three months, he's had a vocabulary explosion. He talks all the time, but most of the time we can't understand what he's saying. I probably can understand him the most since I'm with him all the time, but he clearly needs more speech therapy. Not less. James and I are fortunate enough that we are able to enroll Peyton in a private inclusion school, private speech therapy, and private ABA (though we dropped his therapy hours to two sessions a week instead of five).

What upsets me the most is how happy the evaluators were to tell us that he didn't qualify for full services. He's intelligent and adorable, but he needs help. He just doesn't need as much help as other kids.

And, I think of all the other kids who score low in language, as low as the 8th percentile and don't qualify for therapy. Not everyone is able to afford private services. What happens to those kids? What is wrong with our education system????

Okay, back to Peyton's birthday. As you know, Peyton turned three on May 11th. He woke up to all the presents from family and friends and had a blast opening everything. Then James and I had to leave for his IEP meeting with the school district, while he had his last full session of ABA therapy for the week. Then he went to his very last day at Stepping Stones for Early Intervention. The regional center stops funding all services at age 3. We threw him a little party and bid his wonderful teachers, the staff, and all of his friends a very fond and sad farewell. Yes, I cried. I will be forever thankful to the entire staff at Stepping Stones for everything they did for Peyton since he started there last June. I credit them with taking our quiet, nonverbal boy with poor eye contact and social kids and having him graduate talking up a storm, with excellent eye contact and some very good friends! These programs are amazing. Early Intervention works wonders. And yet, their budgets get cut too. (Sorry, I'm having extremely strong, miserable feelings about the education system and special services departments).

Peyton went in for his three year checkup with Dr. Glinder the week of his birthday. Dr. Glinder was amazed at how far Peyton's come with all the services we've provided and the work we're doing with him.

His vitals were as follows:

Height: 37.5 inches (47th percentile)
Weight: 34 pounds (74th percentile)

He's extremely healthy and strong. Though he looks thin, his muscle development is great and his weight is well distributed. He actually looks a little skinny without clothes on.

Here are pictures of him opening his presents.

Visit to Harley Farms, November 2011

Last November, we thought it would be fun to take Peyton to meet some goats at the Harley Farms goat farm and cheese shop in Pescadero. We had so much fun! 

Peyton LOVED the goats. He was so happy out in the meadow and made a friend (a goat)! We spent about 30 minutes watching him help the goat graze, pulling grass and feeding it to her. It was very sweet. Enjoy some pictures of Peyton and the goat(s)!

Hello, Let Me Explain

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.