Well, I have been thinking about this for a long time-trying to settle in to what this feels like. Trying to wrap my head around what our day to day is going to /does look like and what the next few years will hold for our family and our little girl, Keelin.A short history...........Keelin was born in 2006 after several years of infertility and six In Vitro Fertilizations. It was a long road but we thought the hard part was basically over. At 9 weeks of age, Keelin stopped breathing. Long story short, after a brain and spine MRI, a diagnostic surgery and seeing many specialists (pediatric ENT, pediatric gastroenterologist and pediatric neurologist) Keelin was ruled out for brain and lung tumors and was determined to have low muscle tone, requiring physical therpay and GERD, requiring medicines 8 times a day. Her life was not threatened and we were very happy!
At 12 months of age, while still in physical therapy we noticed Keelin was not hitting her language milestones. We were referred out to a pediatric geneticist for more test. Crazy tests. 17 vials of blood drawn at one time. Scary possibilities. The tests took two months to get back and good news-all was normal. But why couldn't she speak? We then were sent to a speech therapist.
The speech therapist confirmed that Keelin had a significant expressive speech delay. Her receptive skills-what she understood- at 17 months were that of an 18-21 month old. Her expressive skills-what she could say-were that of a 3-6month old baby. We were told to get her into speech therpay right away. Our insurance only allowed a minimal amount of coverage and we had eaten that up on the inital evaluation. We had to see if we could qualify through the state. The state came in and did an evaluation-Keelin qualified as she was definitely behind, but no speech therapists would be available for three months. Keelin would have to wait.
As we waited, Keelin fell more and more behind and grew more frustrated. We knew she could understand us-she just couldn't tell us what she needed. She had some words, but not nearly enough to make her basic needs known. Finally we got referred out to a program with a speech therapist that would come to the house. Earlier this month, Megan-our fab Speech Language Pathologist- or SLP for short-did another round of testing on Keelin. Her receptive language at 21 months of age was now up to that of a 27-30 month old but her expressive language was still at 3-6 months with some skills in the 6-9 month and 9-15 month ranges. Drastically and severely speech delayed.
But with this bad news, was also an answer. Keelin was diagnosed with Apraxia of Speech. Turns out, she has almost all the hallmarks of this disorder. Apraxia is a neuro-processing disorder. Keelin's brain cannot pull up the "files" or "neural pathways" to make her muscles in her mouth and tongue to produce sound consistently. She doesn't imitate sounds unless she has heard them many, many, many times before. She also uses the same sounds to mean multpile things and often times her sounds come out stilted or slurred.
What causes Apraxia is not understood-and Keelin continues to have other issues that complicate her progress. You can see more about Apraxia Of Speech in children at http://apraxia-kids.org . There is such good information on this site! For now-Keelin receives Speech Therapy 2 times a week and occupational therpay 1 time a week. The insurance company is trying to deny continued occupational therapy and I am working hard to get approval for services. Keelin's therapy will be ongoing for several years.
WE are happy to have an aswer and are slowly starting to get into the new routine of our lives. Therapy is alot of work for her and me. I try to teach Kris and Jared what we learned and they are GREAT helpers. Keelin's long term prognosis seems to be good and hopefully she will be able to attend a regular mainstream school when the time comes.
In the meantime- we keep on working, keep on living and keep on finding the things in life that are beautiful. Oh yeah-and I could sure use a vacation!!!!!
Thanks for reading-
Laura
9 comments:
sending convo...
Thanks for sharing. Can't believe the insurance company is trying to deny continued O.T. Insane! There may be relevant support groups in your area & it could be helpful to connect with other families going though the same experience. Just a thought...& you've probably looked into it already anyways. My best wishes to you for a positive outcome. Take care & I hope you get to take that vacation :)
She's a beautiful girl. I'm so glad you are getting some answers. Hugs!
Stella
What a cutie! Maybe your speech therapist has already suggested this, but if the problem is mainly with the neural interaction with the orofacial muscles, maybe you could try sign language with her? It wouldn't interfere with her acquisition of spoken English (there are lots of English-ASL bilinguals running around out there, trust me!), but might allow her to be able to express herself more fully...
I love you! When you are ready for a Bakersfield getaway, the kiddo's are mine for the night :)
YOu all are so sweet to leave comments. She is definitely learning sign language and has "more" "eat" "please" "thank you" and her newest one-which is really an approxiamtion of the actual sign "help".
Insurance companies stink sometimes, and we have good insurance. IT's definitely a grind. I feel like I am fighting battles on so many fronts....argh!
But everyone's support has been great and it's nice to know people out there care!
:)
We've got a very similar situation to yours. Our daughter was born at 23 weeks and, other than speech and GI issues (GERD, issues with eating/swallowing, and allergies and constipation), she's doing great. She is 18 months corrected/21 months actual and just beginning to imitate more consistently (single syllables, a couple of words). She knows around 50 signs---I HIGHLY recommend Signing Time DVDs for Keelin. We're in private speech therapy (thank goodness for my partner's insurance) two times a week, beginning this week, and see a speech therapist through Early Intervention twice a week (have been since June). Sounds like it will be a long hard road, but hopefully we'll get Hallie talking and you guys will get Keelin talking!
Hi - I came across your blog while googling "apraxia." My son, who turned 2 in late January, was also diagnosed by SLPs with apraxia of speech. Just like your daughter, he has amazing receptive language skills (he could understand us in English, Spanish and French), but his expressive language was significantly delayed, and he was extremely frsutrated. At 2, he had a vocabulary of *maybe* 10 words -- and some of those weren't really words at all, but just approximations and sounds.
As you've probably seen for yourself, with the speech delay comes other developmental delays. Since March, we've been receiving speech therapy 3x/week, OT 2x/week, and PT 1X/week. Our son also goes to a center-based program for play therapy 3 mornings a week. Everything is covered through the NYS "Early Intervention" program, so I definitely recommend looking into what is offered in your state. We haven't had to deal with insurance claims or denials, thank heavens for that.
I will say, our daily schedule is CRAZY, but it's definitely working! We had an appointment with our pedi yesterday for our 9 month old baby, and our doc observed our son at the same time. Our son wasn't there for an appointment or anything, he was just in the room with us while our baby was getting checked out. For the first time, he was actually talking with the doctor -- he greeted him with a cheerful, "Hi, Doc!" and a high five when he entered the room! He even lined up a dozen of the wooden tongue depressors on the edge of a chair and counted them, 1-12. Our doctor asked us how the EI was going, and he said it seemed to him like our son is really catching up to other 2-yr olds he sees in the office. So that was REALLY good to hear from someone who hasn't seen him since he started the EI program and speech therapy!
I hope you and your daughter experience similar positive outcomes. It's not easy an eay road, but I think it's true what everyone said -- the earlier you catch this, the better.
I just came across your blog when researching apraxia again... My son was just diagnosed with Apraxia. He is 4. I am very interested in your successes, as well as the set backs with your daughters therapy. Good Luck to you and your beautiful daughter.
Amy
If you are interested, my blog is amybarlowandfamily.blogspot.com
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