Friday, August 15, 2008

update on John

John completed his first week of preschool yesterday. He still says "yay!" when we talk about preschool, so I assume he is enjoying himself there. It's strange to not know what he's experiencing, how he's behaving, what the other children are like in the classroom, etc. I ask him questions but they have to have yes/no answers. (On that note, John came home from preschool the first day and told me "NO!" when I asked him to do something. That is completely new for John, though he has been putting in plenty of practice since Monday. Hey, thanks, preschool kids!!)

John's speech therapy with Jamie ended last week. We were so thankful to find a new speech therapy office that did not have a wait list. John visited "Ms. Tamara" today and she seems to be bright, firm, and yet sensitive. Tamara will see John twice a week at her office. She also suggested that John receive Occupational Therapy (OT) in addition to the Speech Therapy (ST) because many children who are having trouble putting sounds into syllables and then into words (think me-ow, or Ha-va), do better at ST after a session of brain warming OT. Since John has a few sensory sensitivities, is a bit delayed in motor skills such as dressing and undressing himself, and has a few big fears (e.g. dogs!), some OT could do him quite a bit of good.

When I met the occupational therapist, Carlina ("my mom made up my name and I love it!"), I really wanted her to work with John. Let's just put it this way: Havilah was climbing all over everything in the waiting room and was now in a prickly perch. Carlina pranced over and picked Hava up and Havilah didn't complain. In fact, she looked at the pictures on the walls with Carlina. Ok, this woman has a gift.

Carlina also brings her big golden retriever to work every day. He's a therapy dog--helping kids overcome their fear of dogs! That would be good for us (and all of our poor family members who have to lock up their dogs and cats when John comes for a visit).

I also couldn't help but agree with Carlina's assessment "oh, he is so cute! What a sweet boy! I'm so glad I get to play with him!" Yes, yes, I told her; he is such a sweet boy (in spite of those preschool peers).

I asked Tamara about getting a formal diagnosis for John. She highly recommended it, since her approach to ST will be different depending on what his delay/disorder is diagnosed as. Since he has many characteristics of apraxia--but because apraxia is rare and fairly serious--it would be good to have some answers. Unfortunately, only developmental psychologists are qualified to diagnose speech disorders. Tamara and Carlina recommended a "wonderful" doctor to see and he does seem to be thorough and very good at what he does. (Too bad he charges $1/20 seconds and it takes over 8 hours for all of the tests and reports!) I'll follow up on other diagnosing options on Monday, but I really want to get this taken care of soon. The more answers we have--and the sooner we have them--the better we can help John.

In the meantime, I am so thankful to have a small team of helpers. John's preschool teacher, Ms. Martin, and his preschool helpers, Ms. Kim and Ms. Nancy, seem to be gifted for working with special needs three-year-olds (and believe me, some of these children truly are special needs because of down syndrome, serious behavior issues, etc.). And now we have Tamara and Carlina to work one-on-one with John. I've also started John on ProEFA, a lovely lemon-flavored fish oil that is supposed to help speech delayed brains begin to connect the dots. And I would be wrong not to mention that our parents and siblings have been huge supporters. They listen to us talk about speech therapy, and John's behavior related to talking, and how he's working on this and that, and all the other boring-to-everyone-else things we need to talk to someone about because sometimes we (or at least I) feel alone in this boat.

Seriously, this is such a tiny issue in comparison to the things other parents face. Just this week I read in the newspaper about a three-year-old who has forty epileptic seizures every day. And about a twenty-year-old girl who just had conjoined twins here in Phoenix (she has two other children too!). So in the real world, John's speech is a small issue. But in our little world, it's big. It's big because we want John to be able to pursue whatever he wants in life. It's big because he's never been able to say his name, his sister's name, or tell me where he hurts. It's big because someday I want to hear all about what's going on at school. It's big because asking someone to play with you is much more effective then hitting them to get their attention. It's big because John wants to talk, he really does.

I'm SO thankful to have resources, preschool, therapists, loving family and friends, and at least a few people who bear with me in these long posts. There is hope...even if it feels far off.

3 comments:

lauren said...

just wanted to let you know that i appreciate the updates on John and am praying for you as you maneuver through this maze of treatment options, therapy, diagnostics, etc. one thing i learned teaching kindergarten (where many kids are diagnosed for the first time, so way to go for getting on this early!!), was that one of the major predictors of a child improving and overcoming delays is whether or not he has parents willing to fight for him. i will continue to pray.

Anonymous said...

I know you have cried your own tears for John--because I have. Because we love him so much and we wish he didn't have this obstacle to overcome as such a little guy. But we're so grateful that he is still so happy and loving--and that God is providing so much help for him. Especially for parents who love him and are committed to do everything they can to help him. We're ready to learn whatever we need to help him, too! Can't wait to see him (and you and Havilah!) SOON! love you lots! MOM

Anonymous said...

not sure about how to leave a comment but wanted you to know we will be available to help whenever we can. In between our upcoming quest for temporary part time work I would love to spend more time with you. The last year has gone by so quickly. Love nonni

 
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