Wednesday, July 31, 2013

Random phone call


Last week I received a random call from one of the GI doctors at C's GI office. The phone call was about an opportunity for him to go to Marcus Autism Center in Atlanta, GA for a week of free intense feeding therapy at the feeding clinic! Sounds too good to be true, huh?! 

Not sure if you remember but over a year ago I filled out the 30 page application to Marcus feeding clinic only to battle insurance about getting coverage there. I never was able to get approval after several appeals. Basically we decided we would continue doing therapy with our favorite feeding therapist at the hospital weekly and just see how things go. Connor's progress has definitely been a roller coaster, one week he is very interested in food and tasting and then the next he may refuse everything that he has previously shown interest in. We continue to do food play, no pressure involved 3 times a day. We make sure to include him at the table even if he isn't interested. I will say he has made progress but it is at a super slow pace. Right now his biggest struggle is swallowing the food, he will put food in his mouth and do a few chews and then packs it away. He will keep the food there forever unless he throws up, occasionally he swallows it. 

I do find it quite interesting that we received this phone call not long after we were told he is showing characteristics of autism....how fitting, this is at an Autism Center...maybe this is meant to be?! I called Marcus to get all the details and to find out when we need to be there. So, it is a clinical trial involving intense therapy from 8:30-4:30 Monday- Friday. In the morning before therapy starts, C will get a placebo or a medication that is being studied to reduce anxiety and allow the brain to accept new therapy while reducing past associations with food. Regardless, placebo or not, C will get all day intense therapy! Josh and I feel we would be dumb to pass this opportunity up..we will never know how Connor will do unless we try. We have decided not to question this decision and trust that this is Gods way of giving us a sign to give this feeding therapy a try. :) 

Here is the kicker, we have to be there next week for the first evaluation ( just one day) and then the following week we need to be in Atlanta ready to start! Very short notice and of course it has put some strain on me to get my shifts covered at the hospital, but thankfully I was able to. Thanks to all my amazing coworkers that helped me out!  I stress about the work situation  and know that I need to work but I have to do what is best for my little guy and this is an amazing opportunity that we can't pass up! Thankfully it is no big deal for Josh to get off work...whew!

So now I sell the heck out of Button Lovies so that it can help us handle lodging in Atlanta for a week, every little bit helps! We all know that a week stay in Atlanta won't be cheap! But, no stress or worries...we will make it happen! :) 

I will try my best to update daily while we are in Atlanta to share how things are going! I am beyond excited about this opportunity for our little man! I pray this week of intense therapy is just what he needs to push him to eating successfully everyday. 

C with his goldfish Button Lovie...how cute is that?!

C and his best friend, George! George goes with us everywhere now!

Trying to figure out how to work this new tricycle!

Mommy and C :)

Wednesday, July 17, 2013

ABA therapy

I write this while my sweet angel sleeps....
Yesterday Connor had the STAT test done to evaluate for autism with developmental pediatrics. The first step was the m-chat which  was done around his 2nd birthday that showed him at high risk for autism. The STAT ( screening tool for autism in toddlers) was the second step process evaluation. 

Josh and I may not always see eye to eye about what makes our little man quirky, but we do both have the same goal for him: to do everything we can possibly do for him now to provide him with the best life. 

The psychologist evaluated through play with Connor while we answered a million and one questions about his health and behaviors for about 2 hours. The psychologist was testing his social relationships, imaginative play, imitation, communication, and developmental skills. I am sure she tested for more things that I can't remember, that is quite a stressful time for any parent to remember so much information. 

Both evaluators met together to discuss Connor and the results from the STAT for about 20 minutes. I am sure those were the longest 20 minutes of my life! When we sat down to get the results we were told Connor failed the STAT. In other words, he has been identified as possibly having autism.  Of course in my heart, I already knew the results....most mom's have that special power, but there is always that little part of you that hopes otherwise. With that being said, he now qualifies for 20-25 hours / week of ABA therapy (applied behavior analysis) in addition to the therapies he already receives   everyday. I know adding those therapies will make it tough for Connor and our family, but we are willing to do anything to help out little man out. The ABA therapy is obviously an intense therapy that is used with autistic children. It will get started as soon as possible. In January he will do the final step evaluation called the ADOS (autism diagnostic observation schedule). Depending upon those results will determine if he gets the actual diagnosis or not. 

As a mom, I do carry guilt. I wonder if there is something I did, or something I didn't do, or what I could have done differently that would have made his life not so difficult. When I start thinking that I try to push the thoughts away and remind myself that God has a plan. He is the only one who knows the plan and we are along for the ride....what happens is meant to happen so there is no need to worry and stress over it. Some days are easier than others for me..but regardless, diagnosis or not - Connor is still our same beautiful, amazing, strong, happy, smart, stubborn little miracle and nothing will EVER change that! 

I know God put Connor in our lives because he knew Josh and I could handle him and would shower him with unconditional love. He knew that we had amazing family and friends that are always there for support to help us through the tough times and share the happy times with. With that, I want to thank all of y'all for being amazing support to us from the very beginning! :) We love you all and couldn't not thank you enough. 


Therapy with his Early Interventionist, we just love Beth!

Hanging out at Frankie's Fun Park

First trip to Saluda Shoals splash pad....not a huge fan but took some time & he started to warm up to the water.

First time at Monkey Joes, a little overwhelming for C but he enjoyed climbing!