Life After NICU

ECI to PPCD, The Transition Process is Underway

A day late because sometimes life happens on it’s own schedule, not mine.

For 11 years I worked with Early Childhood Intervention, assisting families with the developmental delays of their children, and helping them through the transition process as their children neared the age of three. I’ve talked families through the steps of being referred to the Preschool Program for Children with Disabilities (PPCD), and tried to ease their fears as they told me the concerns and worries they had about sending their “baby” to school. I’ve participated in countless evaluations, and watched as families turned their little one over to an evaluation team, and then answered question after question about their child. I know this process inside and out, but it is unbelievably hard to go through it with James.

Thankfully James only knows how fun it is. He did great at his evaluation. I think he loved every bit it. He enjoyed all the attention, playing with new toys, and he especially enjoyed running up and down the hallway, in and out of rooms, so the physical therapist could observe how he moves. James had a blast and would go back again if he could.

Not me. I cried. The hard kind of cry where you can’t even talk. I wasn’t expecting that, even though a very wise person told me I’d cry. She’s been through this, and she knows how much it hurts your heart to have a group of people evaluating your child because your child is different. I know James is behind. His development is not like a typical almost-three-year-old, and truly, I’m ok with that. But it’s easier to be ok with that at home, where I can help him and protect him a little. It’s a lot harder to be ok with that in the real world.

Sweet JamesI’m trying to focus on all the good as I find a way to be ok with this over the next few months. And there is a lot of good. We had an amazing group of people helping us through this process. His assessment team was kind and very understanding. They gave me lots of time to pull myself together so I could participate. One of them shared that she, too, has been in that same position with her son, and she understands how difficult it can be. They didn’t hesitate when I questioned the evaluation they were going to do (on the advice of one of his awesome therapists – thank you!), and had no problem changing their plans and doing a different test on James. *(If you’re getting ready to go through this process, ask specifically what type of evaluation they will be doing. They didn’t tell me until I asked that one of the evals they were going to do is an IQ test. I don’t want an IQ test done on James at this age. It won’t be accurate, and I don’t want a low score influencing expectations his teachers have of him. I learned later that a short discussion followed his evaluation because they never had a parent question this before. And, they know the IQ tests aren’t accurate, but they continue to do them anyway. Maybe if more people ask questions they’ll find a more accurate test to use on every child they evaluate.)

In my head I know it’s best for James to go to school. In my heart I’m full of fear and worry and I just want to keep him home and protect him. Somehow, over the next few months, my head and my heart will meet and get this all figured out. James is growing into an amazing little boy and I have no doubt he will love going to school. He will learn so many new things, and he’ll grow and change in ways I can’t even imagine. I think James has a lot to contribute also. He has an infectious joy and excitement for everything he does. He truly makes every moment better. I just hope James has a teacher who will take the time to find and appreciate all of the good and wonderful parts of my little guy.

8 thoughts on “ECI to PPCD, The Transition Process is Underway

  1. It’s awesome to see their progress in such a small amount of time. We could tell a difference in communication after only 2 weeks! It gets easier when you see progress.

    • Wow, two weeks? That’s awesome. I don’t know how you do it, but I’ll be thinking about you and a few other moms I know who have been in the same situation when we finally get to his first day. I know he needs to be there and it’ll be so good for him. Have a few months to convince myself of that. 🙂

  2. So glad to have read this post today! We are coming up on our evaluation too, in a few weeks. And I cried just reading about James’, so I’m sure I’ll be crying at our little boy’s too! Jack turns 3 in August and has had EI services since he was 5 months old. Thanks for sharing the info about the IQ test…I will be asking about that as well.

  3. I love when you post pictures of James! He seems so happy all the time! I can only imagine your pain or your fear when you share all of the trials for you and James. My heart is sad that anyone has to feel that. But when you spoke of your sadness (crying HARD!) I had to share my story……Nicole is our only daughter, and as I said, we live in Louisiana. I can handle Nicole leaving our home, I’ve gotten adjusted to it since college days for her, but when I LEAVE HER in Dallas, it isn’t a pretty scene. The minute I’m in my vehicle I cry HARD as well! And I shouldn’t, she is 26, married, and happy. But yes, I do cry. And I must admit, I usually cry for a few days after too. I think it is because as much as we want them to be independant, we deep down always still want them to “need” us. And they always will need us (as Mothers). We are happy she is happy, and we are so proud of her, just like you are of James. So don’t worry, cry when you have too, laugh when you can. I say it is all part of being a Mom. Trust and know James to bring you more smiles and laughter than anything! He will as he learns more and more each day. Prayers and hugs to you!

    • Thank you Debbie. I always appreciate your comments. It has to be so hard to be apart from Nicole. I’m sure it helps to know that’s she’s doing amazing things as a nurse in the ICU! So, from what you and a few others have said, the tearful moments have only just begun. 🙂 Guess we can’t protect them forever, but I wouldn’t mind doing it just a little longer. As always, thank you for your kind words. I appreciate what you have to say.

  4. I cried through quite a few of the evaluations that Samuel had. I hated hearing about his low IQ. I wish I had known to not have that test done. Samuel is 13 years old now, he is extremely intelligent, he just can’t articulate himself as well as others. James is an amazing child. I love to read your blog. You are an amazing mother. Thank you for sharing with us.

    • I’m so sorry you’ve had to go through that Rachel. I am so thankful for the advice I received from one of James’ therapist, or I would not have known that I could request an alternate test. Hearing a tiny bit of what you’ve gone through with Samuel reminds me that this isn’t over because we made it through one eval, he has so many more to go. We just have to take one little step at a time.Thank you so much for your kind words. I’m so glad you enjoy reading about James.

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