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Tuesday, May 31, 2016

Building a Strong Team

For the past year, my son was already receiving Early Intervention and we built a team around him that is strong. Here's why I think having a strong team is so important not just for the child but for the entire family. 

Let me first explain Early Intervention. Early intervention includes but is not limited to the following services:
- Provides families with a plan
- Supports services and resources for children that enhance daily opportunities for learning
- Provides visits in settings where a child would be if he/she did not have developmental delay/disabilities "Natural Environment"
- Special instruction/family training/support
- Organizing nursing services, social work services, nutrition services (food therapy)
- Assistive technology devices and services
- Physical therapy (PT)
- Occupational therapy (OT)
- Speech Language Pathology (SLP).


In a nutshell, the Early Interventionist (EI) assists in meeting the needs of the child as well as the needs of the family.
Back in July of 2014, I had my son first evaluated to see if he qualified for Early Intervention through BabyNet (a government organization that helps with special needs children). When I was told that he did qualify for further evaluation. They sent us to another place where I had to fill out some paperwork on him and sit and answer questions regarding his behavior. They sat us in a room, asked him to tend to a few tasks while also doing things around him like blowing bubbles or making noise. Thirty minutes later, we had a starting point. It came back that he might be autistic so we very quickly started the process to get him the help he needed. 

First I lined up his Early Interventionist (E.I.) to assist and support me in getting all the therapies he would need. We chose Carolina Behavior and Beyond because they came with great referrals and the founder has a very personal understanding and relationship with special needs. Through their evaluation, we new he needed Speech Therapy (S.T.), Occupational Therapy (O.T.). Through the BabyNet evaluation we knew he would need ABA Therapy (Applied Behavior Analysis is the application of the principles of learning and motivation from Behavior Analysis.) 

We were fortunate to get his Speech Therapy through Columbia Speaks Speech Therapy in just a few weeks. His ABA through Early Autism Project which took about two months and Occupational Therapy took about three months. Occupational therapy was the hardest to find. One because the surrounding area doesn't have enough Occupational Therapist and two, not enough of the OT's are trained well in Sensory Processing Integration.  His OT started out at Palmetto Health Orthopedic Therapy and all though they tried to help him there, I just didn't feel as though it was working out. He wasn't getting much accomplished. So when the wait list opened up at a new location, I jumped on it and he now deals with SPROUT Pediatrics for Occupational Therapy. Here I feel they are more knowledgable on the subject as they already deal with kids with Autism and or Sensory Processing Disorder on a regular basis as well as having a personal connection. Though I would like to have him receive Food Therapy for his food aversions, I am more focused on getting him talking, attending to his tasks and connecting so I try my best at home on my own but it will come in time.


It was important to me as a mother to know that the team I surrounded my son with are people who truly care about him first. I couldn't be happier now. It isn't perfect (what is?), we have had some bumps in the road but I feel supported and my son has been showing great strides in improving his speech, connection to us and the world around him. It's been only ten months since he has been receiving all of his therapies and he his speaking more and more., Engaging with us and learning more every day. He still has a long way to go but he has a strong team and I am confident he is going to be okay. 


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Friday, May 13, 2016

Diagnosis Day

You prepare yourself for D-day. You suspect it, you convince yourself that the worse case scenario is still better then most. Convince yourself that diagnosis will help. You say the word/(s) regularly to reduce shock value. You do your best to prepare but the news is coming and your still not sure if your ready. Then you hear the words "I summed up his ADOS among other things with my notes...." What seems like longest pause ever. " And well, it looks like your son did test for Autism." Crash! It's reality.

To some extent it was a huge relief but also a big let down. We heard a lot of mights, maybes and ifs but nothing concrete. More then anything, I was relieved because we finally knew what he was dealing with. Yet the mom in me, the irrational part of me, wanted to cry, wail because how could my "perfect" boy have Autism. 

You go through all the scenarios even while the doctor is spitting information at you.  I'm thinking, I just didn't take enough prenatal vitamins, I was to old, on to much bed rest, not enough rest, stress, twins, maybe the IUI drugs, etc.  Words and thoughts swirling in my head like a cyclone. What could I have done differently? I tune back in to hear "tested low to medium." That's good, right? "Yes, that's good." 

Then Doctor C. begins to discuss game plans for him. Many which we already have placed, speech therapy, occupational therapy, ABA(Autism Behavioral Analysis), school. She reassures me that he will be more then fine. That he is very bright and has come along way in only 10 months of early intervention. I remind myself that only 10 months ago he had stopped talking all together, wouldn't look at me or even let me hold him gently. I knew even then, I knew but now I know. 

To some aspect I guess a mom always knows but denial can be powerful. Even as I started him down this process, I fought my denial in search of answers and I got what I wanted, an answer. The answer is Autism. 

Of course, now I have a million new questions and a new search for answers but the most important answer I have is that my son will be okay. My son may be living with Autism but he is not Autism. He is perfection, beauty, brilliance, lively, happy, unique and a loved little boy.


Thanks for following and have a blessed day.


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