Sunday, April 7, 2019

Progress and Hope

I know that it has been forever since I have created a post. I desperately want to do better in this regards as we move forward in the coming year. I think that I have blogged less in large part, because my child has been doing so well and autism has become less and less at the forefront of my thoughts. To be honest, my preteen oldest child has been the one to give me the most angst in recent months. I decided that I needed to sit down and create a post after speaking with a mom of a newly diagnosed child. Her words really resonated with me. She told me, "Your story gives me hope. You need to continue to share your voice with other parents, especially to those of newly diagnosed children."

You see, I was once a parent to a child who was newly diagnosed. I wondered all of the same thoughts that I am assuming every parent of a newly diagnosed child thinks. My child was diagnosed at age three and I had no idea if he would ever be able to be mainstreamed in school due to behaviors. I had no idea if he would develop reciprocal-functional communication. His meltdowns were severe and would last upwards of 60 minutes and I wondered how this type of behavior would impact his life and the life of his immediate family. I made it my mission to do as much early intervention as I possibly could in an effort to know that I had done everything that I possibly could for my son. We enrolled him in developmental preschool, private speech, private occupational therapy, applied behavior analysis, physical therapy, and music therapy. Our life was therapy and we basically lived in our car, but despite these days being long and hard, I don't regret these choices for a minute. My son is thriving today and I honestly want to leap and shout for joy with the progress that he has made.

Now I realize that not every child will make this type of progress and that there are many parents that have dedicated their life to helping their child progress just like I have done, but the progress seen has been very little. I know that this happens, because I have seen it first hand as a special education teacher. With all of this being said, I do want to say that I believe in early intervention and I am a strong proponent for it. I do not believe that my child would have made the gains that he has if it were not for all of the interventions that we put in place when he was young. As a mother to a newly diagnosed child, I personally felt like what are the risks to early intervention? The risk being that he doesn't improve, but the reward being far greater in regards to him being able to grow and make progress. I was willing to take this risk and even a little bit of progress was worth the time and commitment that early intervention takes. I wanted to be able to look at my child and say, "I have done everything that I possibly could to make your life just a little bit easier."

Some of you may have read my posts in regards to the Duke University clinical trial that we participated in last year. I had banked my son's cord blood at birth and we had it infused last May. I haven't posted a lot since then, but we have seen astronomical growth in my son since this was done. In addition to the stem cells, we also did a round of Cog Med brain retraining to help with my son's working memory. You see, my son struggled with processing anything above two step directions. He is now able to do three and four step directions. Both of these therapies cost time and money, but from my perspective, they were worth the investment. My son is still in ABA and he is still receiving occupational therapy and speech therapy in the school therapy. He is also still monitored by his physical therapist. His hours in these therapies have drastically decreased since he was diagnosed. We are doing approximately 25% of the hours that we were doing upon his initial diagnosis.

Today, my child is in a regular second grade class in a rigorous private school. His teacher is absolutely amazing and she has done everything in her power to ensure his success in this environment. This child absolutely amazes me every day. He is passionate about those that are less fortunate than him and he has such a giving heart. He is able to articulate himself so well and I could honestly see him being a pastor one day. He has a heart of gold and such a love for the Lord. I am so blessed to be his mom and I know that this boy has such a wonderful story to tell and I am sure that he will tell his story as he continues to grow and mature. I am so thankful to be the mother to this wonderful child. I will try and share the specifics of some of the interventions that we have done in the coming weeks.

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