Thursday, February 23, 2012

Backed into a corner

To be backed into a corner is often considered a negative, but in Leo's case it means we are moving in the right direction. Leo is starting to crawl- at least backwards. Today, Leo backwards crawled himself into a corner and then cried out for help. Two successes- he crawled (backwards) and cried for help! I say we are moving in the right direction.

So often I feel like we are ignorant to what it means to raise a child with special needs or at the very least a child with WHS. I think it may be different (in some cases) when you birth a child with special needs especially if you know before the birth what the special needs is. You research, you read everything you can about the condition, you talk to specialists, you prepare, you learn, you keep learning after birth, you fight for your child's rights. You grow in your knowledge and expertise as your child grows. Jeremy and I are learning how much we really do not know about raising a child with extensive special needs. Leo came to live with us at 13 months -so we were already 13 months behind in learning. I often with ask our therapists about something I read on someones blog (someone who clearly knows what they are doing) and ask if Leo should have that or if we should be doing that with him. The thing is each child special needs or not is different and needs different things.

In a way this can be good. We treat Leo like we treat our other kids. I expect him to learn to eat (although I am continually being reminded by our therapist that it is going to be a LONG process). I expect Leo to crawl and eventually learn to walk. We have a lot to learn about raising a child with special needs, but I think sometimes our ignorance allows us to push Leo farther then we would if we truly knew and fully accepted all of his limitations. It is finding that balance between pushing too hard and discovering when adaptations are truly needed.

Reality hits me with how far Leo is behind when I walk past the nursery window and see kids his age walking, playing, and "talking". I have to continually remind myself not to compare. I can't compare. The bottom line- Leo is progressing. And so we rejoice when Leo once again backs himself into a corner.

Tuesday, February 14, 2012

Leo's therapy dog!

Emma, our dog, sheds a lot and steals food. But she is great with the kids and generally keeps to herself.
Leo and Emma are developing a special bond.
Emma, yes I said Emma and not Leo, loves it when the therapist come to our home.
Emma knows 2 things-
1. she will get a treat to go in her corner while they are here and
2. if she sits next to the therapist they will pet her and encourage Leo to get to her and also pet her.
Thus we have dubbed Emma Leo's therapy dog. Not sure how Amanda feels about this since Emma is technically her dog, but for now I think Emma senses Leo needs some extra love and protecting.

Wednesday, February 8, 2012

Until further notice, celebrate everything!

With Leo, Kim and I are finding that we need to celebrate mini-milestones.  If he rolls over and sits up without assistance, applaud!   If he sucks his thumb (a big deal for a child with an oral aversion) be sure to kiss him and tell him what a good boy he is.

Here is a video of one of those mini-milestones, filmed just this evening:

Yup, look at that, he's strong enough to stand himself up. 

Look out, world.  Leo's coming!

Wednesday, February 1, 2012


We are home. Leo is doing OK- just OK. It will take about a day for the anesthesia to get out of his system. So for the moment, he is like a rag doll, a cranky rag doll. He is only content if someone is holding him and after all he has been through he deserves extra snuggles.

We have some answers but with Leo nothing has ever been clear cut- we call him our man of mystery. He likes to keep us guessing. The audiologist spent quite a bit of time with us after the test explaining the results. It appears that Leo is not legally deaf. Yippee Jesus! His hearing level for moderate pitches, i.e. someone talking in a normal voice was within normal range. They did detect some hearing loss for high and low pitches, but will need to do more tests to determine the extent of the loss. They were not able to do one of the tests because the operating room was too loud? (I guess you can't shush doctors :)

Lots of medical terms were used, but the bottom line is Leo can hear if you are talking to him but he may not be able to hear the bird singing outside! We will follow up with audiologist in about 3-6 months to run more tests. Someday, he may or may not need a hearing aid device to detect those pitches, but for now we are content to know our sweet little guy can hear the songs we sing to him each day at nap time and bedtime.