Wednesday, August 22, 2012


My heart is beating a million miles a minute and I'm feeling nervous, but excited, but anxious, but thrilled... And yes, I'm drinking some amazing Sangria that my hubby just whipped up, but it's not the Sangria. I may be changing things up for Elijah, and for our family- Big Time.

It all started with a conversation I had with one of the parents at my son, Christian's school. The Mom told me about a great, center-based program that her son (who also has Down syndrome) did when he was two. It's a program called Jump Start that combines all of the therapies- Physical, Occupational, Speech and Child Development into an intensive environment where the child gets regular, daily stimulation in these areas.  The program is a drop off program and runs from 9-12 daily, Monday thru Friday.  The parent involvement is still a part of it, but it's one hour a week and then a three hour observation once a month. This is 5 times less than I am personally, physically doing with him right now.  Currently, Elijah has Physical therapy 2 times a week, Occupational Therapy 2 times a week, Speech therapy once a week and Child Development Services (which is kind of like "Play Therapy") once a week.  All but the Speech therapy takes place in our home.  Our therapists have become like family. Truly, I see them more than most of my family. I raised the question about this center based therapy with two of them last week. I wanted to get their opinions, see if there was a down side, and generally pick their brains. Choosing a program like the one we are looking at, means we'll be trading in our one on one therapies at home for this center based therapy. That is both exciting and bittersweet. Today, surprisingly, I got the call from my Regional Center Coordinator (who has coordinated all of Elijah's therapies services since he was 4 months old) with abrupt news that Elijah had qualified for the Jump Start Center Based Program and would begin on Sept 1st. The RC Coordinator told me he'd start letting our therapists know to do their discharge papers.


Oh, okay. I knew that looking into this possibility would mean that the therapists we currently have would no longer be a part of Elijah's developmental progress. But, I love them. Elijah loves them. And frankly, despite their thinly veiled attempts at maintaining a professional arms length, I think they love us too.  I had a chance to talk to our Physical therapist and our Occupational therapist about the possibility of changing things up, but I hadn't had a chance to talk to our Child Development Services person yet. I'm afraid that she got the call from the Regional Center before even hearing it from me and unfortunately because of my schedule today, I couldn't do anything about it. The Child Development Services (CDS) started first, before anything else. She was there for us, cheering Elijah on before any other services came to the table. I don't know how I'm going to be able to express to these people how much they have touched our lives and how we don't want them gone from our lives. I asked each of our therapists when they first started, how difficult it was when they finished working with a child. Was it  heart wrenching to have seen them one and two times a week and then just be done? They each said that it depended on the child, but that often the joy of seeing the child move onto to bigger things helped it to not feel sad.

Tomorrow, I tour the new facility with Elijah. I am feeling butterflies in my stomach about it all. The thought of having just a couple of hours a day to focus on myself and my work is heady, but I haven't been without him on any consistent basis yet. I will miss him a lot. I quickly remind myself of all of the help he'll be receiving, the social skills he'll get to hone, because there are other children there and how much time we still will have together each day.  Fingers crossed that the path will be clear: that either this program looks like the best possible thing for him, or it doesn't and then I try to stop the wheels from turning so I don't lose our current therapists. See? Exciting. Nerve wrecking. Thrilling. Anxious....CHANGE. It always is.

I'm jumping in with both feet to Change these days. I'm adjusting to life with a Kindergartener- who, thankfully, seems to be quickly understanding the rules and boundaries at school and has been getting great reviews from his teacher ever since we had the infamous peeing/Ferris Bueller attempts last week... I even found myself volunteering to chair the School Carnival Committee for the end of the year carnival.  I am in it- waist deep. I don't know how it's all going to turn out, but I've been here before and growing more trusting of this unknown, uncomfortable place...called Change.

I need a smile in my heart so I can remember who all of the change is for, so I uploaded a few of my Instagram photos from the boys...



Sarah T said...

Regional paid for Gideon to go to Preschool when he was 2. At first I thought no way - I want to keep him home. But then I found an amazing inclusion preschool (he was the only kid with a disability) and he LOVED it! Made such a difference for him to get outit and be with other kids. I bet Elijah will just have a ball and this gets him ready for preschool next year through the school district (if that's what you end up doing). Good luck!

P said...

Chairing the carnival committee!!!!!!!!!!!?! What??!! The schools biggest fundraiser has no chair cause its tons of work. Find helpers immediately!