House of Krause

I’ve come to realize one of the most important elements in life is the ability to relate to another person. This is an e-mail that came to me from a wonderful mother searching for answers, finding them, and trying make sense of it all. I wanted to share her story because I want you to know you are not alone….

M writes:

I gather from your most recent blog entry that this email is one of many of its kind, but I still wanted to write. I just watched your video and I have tears streaming down my face. This is us. You were saying things that have come out of my mouth verbatim; it was unbelievable.

My son C just turned 20 months old. C is my first biological child and my first baby, the first time I’ve ever been through any of these milestones. Like Luke did with “duck”, between 9 and 10 months of age, C said “dog”one afternoon at the vet clinic, clear as day. At 11 months he said “Brova!” (brother) several times in a row when he saw his brother. But then he never said either of those words again. At 12 months he said nothing, at 14 months, nothing. By 18 months, he had learned to make some noises so that if I said “do you hear the birds?” he might respond “hee hee” (for tweet tweet) or when he sees a big truck he goes “Hrrrmmmmm”… but no words. Everyone, including his pediatrician, told me that it was nothing to worry about, that kids all develop at their own rates, that one day he’d out with a complete sentence.

However, there were other strange things - When we introduced solid foods, he seemed to have trouble. If we fed him foods with mixed textures, like oatmeal, he would often gag and throw up. When we got to solid food, C would hold things like bits of cheese in his mouth sometimes for an hour at a time and/or he would cram food in his mouth but not swallow it until he had a whole wad of it in there that we’d have to clear out with our finger. No problem, said people, he’s a breastfed baby. It’s normal for them not to be interested in foods until later. He’ll be able to eat when he’s ready. But then he couldn’t blow bubbles and he couldn’t seem to learn to use a straw or drink from a regular cup. Although he smiles spontaneously, he doesn’t mimic facial expressions and when he tries to put on chapstick, he puts it on his tongue or on his chin, but never his lips. It is like he doesn’t know what his face is doing and he thinks it’s doing something else. He is good at communicating what he needs and is a master of the point and “da?” multi-purpose sound. He has a few signs but isn’t an enthusiastic signer when we have attempted to introduce more. People suggested maybe I was too responsive and told me to make him “work for it” (a strategy which failed spectacularly when I tried it). People told me to talk to him and read to him - which made me roll my eyes as these are both things I’ve been doing since he was born! Mostly people said “don’t worry.” Even my husband said that C was fine, that he was obviously bright and would talk any day. And so I waited.

Eventually I got tired of waiting and called his pediatrician who said if I was concerned, I should contact our local state-sponsored early intervention program. I have spent the last month navigating their various hoops (file this, wait 7 days, sign this, wait 7 more days…). We finally had an evaluation last Thursday. I really liked the SLP - she seemed like the first person to understand what I’ve been saying all along. She told me what I already knew - that C’s gross and fine motor skills seem fine, that he has good receptive language but his feeding skills are delayed and his expressive language is severely delayed. She told me that she couldn’t offer a diagnosis right then and she had mixed feelings about even suggesting this, but, after everything she’d seen and everything I’d told her, she suggested I might want to look into something called “childhood apraxia of speech.” She encouraged me not to freak out when I Googled it but thought I should know the term and push for possible treatment/screening in that direction.

So, naturally I have spent the last 5 days in full research mode. I know I need more evaluation, but this seems like a fit. As you said in the video, I think I’ve always known that something wasn’t right, even though I clung to hope that I was wrong. I did so many internet searches over the last few months but always ended up ruling things out - no, this doesn’t look like autism, no this doesn’t seem to be a global delay… Now after getting this magic word and finding this wealth of information, I oscillate between being relieved that we may finally have a name/that we’re not alone/that there are some possible treatment ideas and despair that there really is probably something seriously wrong with my beloved baby. I am having a hard time.

Every day one of our friends with a similar aged (or younger) child posts something on Facebook about whatever new thing their kid is doing - J can count! T is saying 2 and 3 word combinations! G just said “octagon”! K won’t shut up about planes!… etc., and I feel a wave of rage at the unfairness of all of this and anger at this parent and their child for bragging about their amazing luck - which is promptly followed by a wave of guilt for being angry at a parent who has done me no wrong and is simply excited about their child’s progress.

Rationally, I get that this is a process. I know I need to pull it together and move forward to find out what needs to happen for C. I know that. But I am so overcome with despair. It is like there is some huge wall of sadness that is following me around - and has been for long before we got the word “apraxia.” I have known for a long time in my heart but I would forget for a while and be so happy with all the wonderfulness that is my little boy, but then I’d turn suddenly and there it would be with this horrible sinking in the pit of my stomach.

I don’t know what the point of any of this is or why I’m writing an epic email to a woman I’ve never met. I guess I just needed to get it out. If you’ve made it down this far - thanks for listening! Currently I think my next step is to try and find a private practice SLP. We’re still moving through the system for our state program, but given much of what we’ve experienced so far, I don’t have super high hopes. I figure too many options is better than too few so I’m putting out as many feelers as I can.

C had no words at all until very recently, when we did pick up “mama” “dada” and “baba” (what he calls his brother). Occasionally he’ll randomly say “goggy” for doggy or “Googie” for cookie but doesn’t seem to be able to say them on demand. He did recently learn to blow a toy whistle and we’ve been working on learning to blow bubbles this weekend (hasn’t quite gotten it yet). He babbles a lot, though the sounds are inconsistent with no meaning assigned that I can discern. Still, I hope that some of these things are promising. That maybe if he does have this it’s not too severe. I don’t know. I guess we go on from here.

Anyway, thank you for your blog. I hope you keep posting and I am so glad you’re out there. This is like finding myself in a terrifying long dark tunnel with no end in sight. I can’t tell you how helpful it is to see someone with a torch up ahead.

Best,
M-

THANK YOU M FOR ALLOWING ME TO SHARE YOUR STORY WITH OTHERS!-Jen

This entry was posted on Tuesday, August 9th, 2011 at 11:09 am and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.