In Search of Angels

Jenny Mccarthy has a website called Generation Rescue. It's a great first step to familarize yourself with the initial steps to take when your child is first diagnosed with ASD. She has a section called "rescue angels". These are other parents (or even professionals) who are knowledgable on the bio medical movement and can offer support and guidance. It's great because she has it broken down by states. I think I emailed the whole list of people in a panic of what my next step should be! From all my research, Isma'il is at a critical age where intervention would greatly increase his chances of possible recovery. I need to get the ball rolling! The clock is ticking!

Crying in the Grocery Aisle!

Who knew it would be this hard? I searched 3 grocery stores and found myself in tears wondering what to feed my boy! I was ready to begin to go gluten free. There are far more products now available due to the rise in celiac's disease so this brought me some comfort. It took a few weeks to try out different snacks. Unfortunately these groceries can get pricey so I always crossed my fingers when trying something new. He seems to love the following snacks:

Fruits

Enjoy Life Snickerdoodle cookies

Lay's Potato Chips (plain)

Ener-G Pretzels

FoodShouldTasteGood- Multigrain

Trader Joes was a saver since I was able to find brown rice pasta and GFCF frozen pancakes (which taste great too!). PCC, and Whole Foods also have many items listed as gluten and casein free. It definitely involves a lot of label reading since "dairy free" doesn't always mean casein free, and "wheat free" doesn't mean gluten free. I highly recommend to parents who are new to the diet to research and make a list before going. I made the mistake of not doing this the first few times which is why I ended up in tears! Very overwhelming!

Going GFCF

After staying up all night absorbing all things autism related I decided to cut milk, dairy (casein) out of Isma'il's diet (Yes I know it's the very NEXT day. I wasn't kidding about wasting any time!)  I wanted to start slow and remove casein before gluten to monitor the reaction (if any) to the elimination of each. I knew milk would be a nightmare. Isma'il was nearly 2 1/2 and still taking a bottle before his nap and bedtime. His diet was filled with nothing but dairy and gluten. Just like the average toddler he loved mac n cheese, pizza, yogurt, pastas etc. This was gonna be H-A-R-D!

At night I filled a sippy cup with Rice Milk. He took a chug and looked at his bottle like I handed him castor oil and handed it back to me and cried. He whined and cried and we distracted him with a story. 

That night Isma'il slept through the night for the FIRST time in over a year and a half (when he first started cow's milk)! We are beyond shocked. We have been so stressed some nights my husband and I both on the verge of tears from Isma'il's screaming and erratic behavior. My husband was going to work incoherent in fear of losing his job from the inability to focus. This night was like a dream for us. Isma'il slept and slept like he hadn't in years. It hurt me to know all this time he was probably so exhausted himself but couldn't sleep as milk for many kids on the spectrum have compromised digestive systems "leaky guts" where the casein and gluten proteins leak from the intestines and travel to their brains creating an "opiate" drug-like effect.

The withdrawl went far better than anticipated. He cried and whined at night for a few days and that was the end of milk. Adios!

The Day That Changed Us Forever.

I have always had the strongest intuition. Any time in my life when I have chosen to ignore it, it has come back to bite me in the ass. 2 months ago we took my son Isma'il in to his pediatrician for his 2 year well exam. I knew I didn't want him to have any immunizations but we had to address the constant nightwaking and screaming that was leaving my husband and I drained for many months. After his normal physicial exam his Dr. asked us if we had any concerns and we brought up the many sleepless nights we've been experiencing. We knew this couldn't be normal. Isma'il would wake up at 2am and stay awake till 6am screaming bloody murder, at the top of his lungs agitated and restless. He gave his generic suggestions of cutting his naps and wrote down the name of a book on sleep that might help. He went on to ask us if we had any other concerns. 

"Well, Isma'il has been having some sensory issues lately."

"Really, what kind?" asked Dr. T

"I went to put a yellow shirt on him and he freaked out. I didn't think much of it but days later I tried again and he repeated this behavior. So I thought I would try another shirt that happened to also be yellow except with his favorite character Curious George but he did the same thing."

We sat there as his Dr. began to tell us he wanted us to have Isma'il evaluated for autism. He continued to say that based on his speech delay along with these new sensory issues that can many times can be early signs of autism and just wants to rule it out. 

Let me say that despite the fact I have ALWAYS been concerned about my son since the day he came into this world. His temperment and sometimes odd behavior made me uneasy at times but I was a new mother and naturally ALWAYS had someone there to tell me "Oh he's just fine. You're just overreacting and being paranoid." and everyone always had a story of someone they knew who "didn't speak until he was 5". But in my heart I felt it..I was constantly worried something just wasn't right.

So why did I sit in that office and cry uncontrollably? Why did I feel like I couldn't breathe? I was even a mom who read Jenny McCarthy's book "Louder Than Words" and always questioned the safety of vaccines. I was actually very familiar with signs of autism yet I really wasn't too versed on the high functioning end of the spectrum.

That night I reseached and researched all things autism. When I read about PDD-NOS my heart sank. I felt I could relate on so many levels.

I didn't want to waste any time. Isma'il was already receiving services for his speech delay from age of 18 months old. Although he had progressed, he still wasn't really conversational..although he COULD say "Mama" and "Dada" he just rarely ever did. So the next morning I called numbers for to make an appointment for his evaluation. They told me 6-9 months wait. I felt so desperate. Over the course of the next few weeks I cried at the drop of a hat over anything and everything. I waited to even confide in my family. I was so overwhelmed with dealing with all this myself I didn't have it in me to repeat the words to anyone else. I couldn't bare to think of anyone looking at my son like he's "Rainman" etc. My mind was going a mile a minute.

Prayerfully U of Washington had 2 different divisions that I could chose from. I called Neurodevelopmental and told them my son was about to turn 2 1/2 in hopes that woud factor into how soon we could get in. Bingo! We would have a pre screening evaluation in a month and a half.  Thank you God.