Speech

As you know, yesterday morning Kieren and I drove to Children's Medical Center in Cincinnati. We went to the Fairfield Outpatient Services building. Traffic wasn't too bad for once, but we had to hike in from the parking lot. Everyone was very nice, but who would have thought that the waiting rooms wouldn't have toys!! Give me a break! Kieren charmed all the staff and then amused herself by climbing the tables, jumping up and down on the chairs, and kissing the fish through the glass of the aquarium. Yeah, we were "those" people in the waiting room!!! Anyway, after a small SNAFU of names being switched on the schedule and waiting an additional 15 minutes, Snow (yes, that's her real name) finally led us back to her office.

We filled out paper work and I answered a million questions twice. Kieren was given toys to play with, watched, evaluated and tested a number of times. After an hour, Kieren put on her coat herself and tried to open the door to leave. She was done! She had a minor melt when I took her coat back off and told her we weren't ready to leave yet.

Anyway, here is what we know: Kieren is on target for almost everything EXCEPT she has an unexplained speech regression. DUH!!! (Sorry, I'm feeling witchy this morning.) We were told by Help Me Grow that her delay was 7 months. HA!!! Try 10-12 months folks! We were told by our ex-doctor that she was fine if she was saying 2 words by 12 months and 2 more by 24 months (Yeah, we didn't buy that crock either that's why we have a new doctor.). WRONG! By 24 months, Kieren should have a vocab. of at least 50 words, be using 2-3 word sentences, and following 2-step directions (Okay, Cullen can't do that one most days!!!).

The good thing is we didn't listen to the ex-doctor and I did a bit of research while we waited for Kieren's eval. From talking to a Speech Pathologist at an FCC meeting, I knew to start mouth exercises (blowing candles out, sticking tongue out and around, making faces to use all the muscles) and to not teach Kieren any more sign language. Kieren has a mirror to see her face as she learns. With Kieren's oral sensativity issues, we knew to get a power toothbrush. I did a bit on internet research too. So we weren't going into this blind.

I know the sign language is a debatable point and touchy to a lot of people. Most people use sign as a part of speech therapy. Even Snow was going to suggest it until we discussed the reasons we won't do it. Yes, it does help some kids learn to speak, but other times it becomes a crutch and kids develop a huge signing vocab and are still not being verbal. I'm not a specialist, but I know my child and I am going with my gut on this one, folks. Snow is in total support of our choice and said that other parents do the same thing with great success. I think it's great if you have had success with the signing, but this is my child and my choice, and I ask that you respect that.

To ease frustration and help with communication, we are going to be using picture tags in the house. This weekend's project is to create a photo library of things (food, sippy of milk, cup of juice, books...) and actions (brushing teeth, pottying, cleaning...) from our house and lives. I will mount and laminate the cards then attach them to the correct area in the house with velcro. The matching card will be on the master board in the family room (at Kieren-height). Kieren is to bring us the card of what she is wanting to say, we reinforce her message (say the words), and act on it. If she needs to potty, she brings us the potty card, we ask her if she needs to potty, take her to the bathroom, stick the card on the velcro next to the potty, and take care of business. When she's done, she puts the card back where it belongs. There are a few other things we are doing too, but this post is long enough.

We are offically on the waiting list for speech therapy. It could be anywhere between 1-6 months before they fit us in. When they do, we will be driving to Cinci once a week for an hour therapy session. Snow says it's really a training session for the parents because the kids tend to clam-up except in their own environment without the therapist! Our insurance will only pay for 20 sessions, which bites. I hope we can get enough control in that amount of time or we will be at the mercy of the Help Me Grow program again. Don't get me wrong. I know this is a good program, but when the EI Specialist looks at you and says "I can't really do anything. I'm not sure why they sent me. You need to go to a Speech Pathologist" it gives you a sinking feeling in the pit of your stomach. And that was at our first session. I know others have had better experiences with HMG, and I am willing to try them again after our insurance runs out. So, that is where we stand as of right now. I will let you know when we get our therapy schedule and update you as we go.

One last thing, I can't stress this enough to new parents and those who are waiting. You are your child's best (and usually only) advocate. It is up to you to fight for your child's needs. No one will do it for you. If you know something isn't right, push it! Demand answers and fight until you get them! Change doctors. Do whatever it takes!!! Cullen has CAPD (usually caused by hearing issues). Maybe if I had fought harder when he was younger, he wouldn't have this lifelong learning problem. I needed someone there to tell me as a first-timer that it's okay to go on gut-instinct! To scream, yell, rant, and rave until someone took me seriously! I'm giving you this advice now as a friend. Don't believe the "experts" just because of who they are. They don't know your child (or you) and aren't there 24/7. I learned my lesson and now I'm doing this for Kieren. Okay, I have to climb off this soapbox and get Kieren's lunch. See ya!