If your baby has Agenesis of the Corpus Callosum and is getting physical therapy, occupational therapy or other therapy related services, it is all too easy to get swept away and caught up in all the doctor appointments and therapies that your baby or little one is doing. If you allow it, you can even spiral right into those guilties for feeling like or thinking that you're not doing enough therapy with your child.
I've been there with my own child, Matthew, when he was a baby and I got therapy burnout real quickly! Matthew was enrolled in Early Intervention and received therapies in our home AND I also took him to outside private physical therapy, some occupational and speech therapies as well.
I am all for and highly recommend therapy services for a baby or child with Agenesis of the Corpus Callosum to help them but I also believe that it is extremely important not to turn into Therapy Mommy or Daddy and to remember that you are first and foremost Mommy and Daddy and you should cherish and spend that very special time with your baby and never lose sight of it nor feel guilty for embracing it with all your heart.
Hi Sandie, I'm Trecia from the ACC-list, Grandmother to Joel David 7 and a half months old with C-ACC. Joel gets PT once weekly. I sometimes feel like the therapist doesn't think we do enough "work" with Joel throughout the week. He's not sitting independently yet so we are working on that, but we don't "force" it on him every time we sit down to play. He's also not crawling yet but he rolls or "combat crawls" to get where he needs to go so I don't see that as a big delay at this stage either. It's been a long time since my kids were this age so I'm not real up on exactly where he "should be" in the sitting up crawling etc stage. I guess what I'm getting at is that I agree with you we aren't the therapists and while we try to incorporate all those things in his play we also just revel in the fact that he can get where he wants to go by his own means and sometimes that's just good enough!
ReplyDeleteHi Trecia,
ReplyDeleteThank you for your comment. I have been reading through your own Blog and saw pictures of your grandson, Joel. He's adorable and I love that you are so involved and supportive in his life and his therapy.
As the mom of a child with complete ACC who is developmentally delayed in all areas I definitely learned to put away my baby books and not let them determine when my son, Matthew, was supposed to be doing something. It was actually depressing to know he "should be" doing a certain developmental milestone at this many months old and he was already many months older and hadn't yet met the milestone.
Just to give you an idea (and not to even attempt to compare my child as a baby to Joel or any other baby with ACC) Matthew did not learn to sit up on his own until he was 11 months old. Even when he did learn to sit up without support it was difficult for him and he would try to lean back against me if I was sitting by him or he would try to lean against something else for support.
Physical Therapy once a week is great! In my experience though, what is learned and practiced during that weekly therapy session does need to be practiced in a home therapy program for it to be truly effective. You definitely don't have to "force" therapy on a baby or child every time you sit down to play. That's where it becomes easy to fall into the therapy burnout and feeling like you're not doing enough 'therapy' time and lose out on that very important precious mommy/baby and grandmother/baby time. ;)
Home therapy can actually be a playful time that melts those two elements together beautifully and allows therapy to be fun whenever possible.
I had already planned to make my next post on Tuesday all about looking for and discovering ways to make therapy fun and playful and how to incorporate 'therapy' into everyday fun activities that your baby and child enjoys.