Wednesday, December 14, 2011

It's official.

Here is the long overdue update. After several doctor appointments and evaluations we got the paperwork in the mail last week. PDD-NOS is now our "official" diagnosis. However, they have labeled her speech delay as dual, which means it is most likely a result of both her being a preemie and her Autism. She also has been diagnosed with SID (Sensory Integration Disorder), which is very common in kids with PDD-NOS.

With these diagnoses, according to the doctors, our primary concerns need to be her social skills and sensory needs. According to them with the limited speech and occupational therapy she receives in school, her speech should catch up on it's own by around 8 1/2 years of age. The social and sensory issues will be something that she will continue to face throughout her life. The social skills most kids inherently know, like personal space and two way conversations, are foreign to her. Her SID causes her to do things like insist on seamless socks and velcro shoes, to touch everything and move constantly since she is a "sensory seeker," and to taste food with MUCH more intensity then the average person.

We decided to place her on the waiting list for some additional no cost speech therapy, because according to them it can't hurt. She also started attending a social skills group in which she is growing by leaps and bounds. Last week she even shared her beloved Pudder Bear with another little boy in her class. It melted my heart. Soon we're hoping to move on to playing interactively with other kids, eye contact, and role playing. The classes have even been better for me as a parent. Five other mothers and I watch our spectrum kids learning to play and interact through a two way mirror once a week. Each mother has different information on therapies, doctors, and ideas that have been invaluable. My favorite part however is knowing that I am not alone. When I raise a concern or ask a question - at least one other mom knows exactly what I am talking about. Priceless.

Next up on our list to address is her sensory needs. She literally needs around ten times the stimuli from her senses than the average child. Kyrie jumps, touches, rocks, and loves anything messy that she can get her hands into. The list of recommended supplies to have at home for her included a trampoline, messy art, anything with bright lights, a weighted blanket, music, and anything else that stimulates her senses. The doctors also want us to enroll her in an adaptive dance, gymnastics, and/or swimming classes - which we're looking into starting in January.

We have incorporated many of the recommended sensory supplies into our Christmas shopping and Ty even went as far as to decide to install a trampoline for the girls in our basement. We did buy a mini trampoline at a thrift store in the meantime, and Ky prefers to spend the majority of her time on it. Ty and I can not wait for Christmas morning... Ky is going to freak out! She is also getting some art, role playing, and music supplies.

As of right now, that is where we are. We have several other options of therapies, camps, and programs, but until we find a good fit for a sensory class we're holding off. It's really hard to pick and choose how to get the biggest bang for a limited buck.

Overall, things are looking up.

Friday, September 2, 2011

the rainbow of behavior

Everyday Ky comes home with a color that signifies how her behavior was that day. We really like blue, dislike yellow, and we hate red. You get the idea. So far we have been in school 9 days and we have had 7 blues, 1 green, and 1 yellow. Not too shabby, especially considering it was the start of school and she had all new teachers, friends, and a different school to deal with.

The day she was yellow she didn't want to get off the bus, and when she finally did she mumbled "I was naughty today." Sigh. This was the note I found in her backpack:

I asked her what happened and with tears streaming down her face she explained that a boy was making fun of her. She exclaimed "it's not nice to laugh at me! so I hit him!" I could almost hear both of our hearts break.

So we talked about making good choices and that she should have asked the boy to stop or told her teacher. We practiced with role playing and told her hitting was not acceptable. We hugged her and told her that she was special and that no one deserves to be laughed at.

That's what we did.

What I wanted to do was tell her to push him down harder next time or teach her how to give an atomic wedgie. I wanted to find the kid and have a delightful chat with his parents, but I won't. Sometimes doing the right thing just sucks.

Tuesday, August 23, 2011

1st grade

Kyrie made it through her first day of all day first grade with flying colors! This year she is in a contained classroom with an individualized education plan. She came home and told me that it was "too much fun!" I am so proud of her and how well she is adjusting. The school year looks like it will be a challenge academically, but hopefully it will be one we can conquer together.

Monday, August 1, 2011

the beginning

It started when Kyrie was around 2 years old. Even as a first time mom, something just wasn't right. Where other toddlers were jabbering away, we were still waiting for her first word. The pediatrician reassured us that she was a preemie and speech issues were normal, but referred us to an early intervention program. She learned a few signs, and we got her first word. A year later she transitioned into the local school district. She went to two full years of Preschool, complete with speech and occupational therapy. According to their evaluations she had a "speech delay" and she would "most likely outgrow it."

Then came Kindergarten. I think it was her first week there that I finally admitted to myself that I didn't believe them. Her inability to relate to her peers, the emotional outbursts, her inability to run like a normal kid... this wasn't a simple speech delay.

I brought up my concerns to the school. The look on her teacher's face spoke volumes... we were on the same page. Autism. I wanted to deny it. I tried to talk myself out of believing it. In fact I couldn't even bring myself to get the official testing done. The school year was a roller coaster ride. She gained skills, she lost skills, she had kids refuse to be her friend, and she found one who understood. I forced the word Autism out of our lives.

It happened on a regular summer day as I was trying to help her complete a little review sheet of her letters. "I stupid! I dumb! I can't do it!" she screamed. My heart broke. Right then I decided I was going to proactively do whatever I could do help her, starting with an official diagnosis. I scoured the internet, called testing centers, scheduled an appointment with her pediatrician, and learned everything I could. Then came the tentative answer. Six little letters PDD-NOS. My child has Autism.

It's hard to describe the love/hate relationship I have with Autism. It's hard to deal with a diagnosis that doesn't have a cure - to know that this is something that she will deal with for the rest of her life. Things other parents take for granted, are our triumphs. Then I begin to wonder if I would want a cure. Autism is part of who she is, and she is extraordinary.

Do I cry myself to sleep some nights wondering if she will realize her dreams of getting married and "writing kid books?" Yes. Do I want to scream at parents that stare and whisper when she has a meltdown at the store because something wasn't stacked correctly in the cart? Yes. Do I want to smack kids that refuse to be her friend and laugh at her? Yes. Do I worry endlessly about my other daughter and the things she gives up for the word Autism? Yes. Is there anything I can do to change those six little letters? No. So we'll take it one day at a time and do it the best we can.