twenty-one.3
I remember Dr. Morton leaving us with a very important charge upon meeting us. Dr. Morton is a developmental pediatrician with the Carle Physician Group. He's more than a pediatrician who has taken the time and education to be an expert in developmental disabilities to me, though. He's the brother of someone with down syndrome. He's experienced the pure joy we get to experience every day. He knows what challenges we face. He gets it. So, when he spoke from the heart to us, we listened. We listened intently as he shared his faith journey with us. We listened intently to what he said we might go through with Alex. And, we most definitely listened intently when he said, "you have been given Alex for a reason, now it's your job to figure out why."
Each day, I wonder why. Each day, I wonder what God is up to. What's stirring inside Him, and me, and Rob, and the big kids, and Alex? What's this mission we have been put on? I promised to share our journey with you. But, lately I have had this thought. Our journey is the most "normal" journey you could imagine. Alexander is the BEST baby a person could ask for. He causes NO problems and hasn't demanded any more of us than our other children. But, with that normal comes abnormal. What do I mean? Well....you see, I am already worried about Alex and preschool. This seems strange, right? I mean, he is 9 months old, why in the world am I worried about preschool??!! In Illinois, we are very fortunate to be enrolled in a program called "Early Intervention." To give you a little background, we have an awesome Service Coordinator (Jamia Joyce) who facilitates therapies for us. We pay IL DHS a monthly family service fee which is based on our income and family size and in turn, we get therapy for Alex. Alex is currently receiving Speech, Physical and Developmental Therapies, all 2 times per month. In Illinois, at the age of 3, Alexander will "age out" of Early Intervention. Seems normal, right? Well, no! Alex's birthday is in November and he will turn 3 on November 9, 2020. On that very exact day, he will be forced to start school in order for his therapies to continue. Do any of you know of any "normally functioning" child who starts school EVER on November 9th? You don't?? Well, that's because in Illinois, we only make children with special needs start school on such a crazy date. My goal is HUGE! I want to get the age changed from 3 to a typical school aged 3. That means Alex wouldn't be forced to age out of Early Intervention until the following August when his typical peers would be starting school. These are the kinds of things I truly believe Dr. Morton was charging me and our family with. I have already made the necessary calls to get the conversations started. I have some serious letter writing work ahead of me. Will I make this happen before 2020? I don't know--but, I do know I will never give up and will keep working toward this goal. It might not be for my Alex, but another Alex might benefit some day from this work. I find myself so concerned with making Alex's life normal that sometimes I forget he's special. And, by special I mean truly a gift given to me. He was created extra special just for us. He continues to teach the other 4 people in this family important lessons in strength, patience and determination. We are continually reminded of exactly how great he is!
In the past 9 months, our family has undergone some crazy changes! I mean, it is normal to accept a new job, close a business, start the new job, and give birth, right? Because of that, I haven't been so good at blogging. But, I know that must change. I read an article tonight about a little boy with down syndrome who was shunned at a community splash pad. I thought to myself, that would never happen in Olney because people are so thoughtful and caring. But, the message in this article was that we must educate people on how to act around and react to people with differing abilities. That's it. That's my job. To educate you all on the challenges we face. On how you can help us make Alex's life normal. And, I can do that by giving you a small glimpse at what we think and do! I promise to be better at giving you guys an Eagle Eye look at what we are experiencing! I know the only way I can completely and entirely advocate for my sweet boy is to educate the people around us. And, I know this was exactly the charge Dr. Morton was giving me that November day in Champaign! Thank you for sharing our journey with us. Thank you for loving our sweet boy. And, thank you for all of the prayers and thoughts you shower us with daily. They are all felt and all appreciated. xxx
God knew what HE was doing when HE blessed you with Alex!
ReplyDeleteI do believe you are following the exact path that has been laid out before you. You were born for these types of battles. You have been blessed with the ability to present a full scope picture, with compassion and a little natural charm ��. You have always been thought provoking in such a sweet way. You can do this!
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DeleteWhen did dhs start charging a monthly fee? My daughter with down syndrome is 26 yrs old, she received the same services when she was little. I don't remember ever having to pay for it.
ReplyDeleteThere is a monthly service fee which is based on your family size and income. I'm not sure when this started but I know it has been this way for at least 15 years.
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