learning curve

For ages now, I've been meaning to write about what's going on with Thomas' speech issues. All summer, really. Because it was at the beginning of the summer that I realized he was regressing and it was full.on.panic for this mama. Still, I will back peddle a little and then we will get to the present and most of all, hope for the future. 

If you recall, Thomas was evaluated last fall by our local school district. There was an obvious speech delay and he was to receive speech therapy 2 times a week, 30 minute sessions with a preschool special needs therapist. According to his evaluation, he would work on certain fine motor skills as well as speech. Thomas loved going to see Mrs. Holly all year, no question about it. He learned to carry his folder and hold her hand walking down the hall of the elementary school. I loved that she was super accessible and I could text her or send her a picture of Thomas accomplishing some goal. We absolutely saw progress and celebrated every little victory. I write this with his blue folder open in front of me, with glowing reports from nearly every session. Thomas learned to draw a cross, a person with limbs and eyes. I admit that I sometimes felt impatient with the emphasis on motor skills - I would have been perfectly happy to drill speech because that's where I feel he needs the most help. Still, I know that it all goes hand-in-hand - that good motor skills somehow jimmy-rig his brain into better speech, more words. 

I suppose he was doing well enough not to qualify for speech over the summer. He never showed any regression during school breaks (which, admittedly, were one to two weeks at most). Still, after a few weeks without speech sessions, I could tell a difference. More jibber jabber, less words. It was frightening. We were just beginning the summer and I could see all the work of the last year collasping down a black hole. Of course, this seemed to happen right when we bought a house and had to pack up our apartment. Still, in the middle of it all, I made phone calls. I knew we needed a private evaluation, finally - and I was scared that it would cost a million dollars. If I would have known how simple and NOT expensive, relatively speaking, it would end up being, I would have done this all quite a long time ago. 

Since it was time to schedule Thomas' 4-year-old check up anyway, when I called to make that appointment, I asked that we get a referral. The nurse tried to put me off to wait to talk to the doctor at his check up in July - which, no. I wasn't going to wait all summer. I pressed and insisted, saying I would come in for an appointment just for the referral, if that was necessary. It turns out that all the doctor had to do was fax over a referral to the clinic they recommend. We scored an evaluation within days, thanks to a lucky cancellation. 

So, we went. I tried to fill out a million miles of paperwork that, later, I was told is usually sent by mail because it is so detailed. I felt like a bad mother who can't remember when my child rolled over but I do remember when he started crawling because I put it on Twitter. Oh, life in a modern age! But Thomas was evaluated and now it's not just a plain old vanilla speech delay but something a little more specific - mixed expressive-receptive language disorder. Which all makes so much sense, really. I believe he has pretty good receptive language skills - he always has. But the expressive just leaves so much to be desired. And oh, I desire it and I know that Thomas does, too. Still, I had never come across this specific disorder in my reading, offline or online. And from what I read, Thomas is so much better off than many that also deal with it. 

All that could be done was a once-a-week, 30 minute session for the summer. Still, that felt like a life raft I could cling to, until we reached the school year, when Thomas starts a five-day-a-week speech preschool class, provided by our local school district. It's only two hours, but still! Every single day, two hours with someone who knows how to work with kids who need help with speech. And what's so crazy is that these amazing speech pathologists know just what to do. They are like mechanics, somehow their techniques flip the right switches in the brain. (Almost like they received years of specialized training! Who would have thought...) I could sense an improvement in Thomas' speech after the evaluation. If we miss a week because of a holiday or a broken down car, I notice there a difference. He loves to go see the new Mrs. Holly (yes, this one is named Holly, too!) and once he got over wanting to play in the OT room, like he got to do on our first office visit, he has done well. He needs this help like someone needs a certain medication to keep their heart on track or their blood sugar level steady. Or like I need coffee...

Still, all this while, it can be so frustrating. And heartbreaking. There are times that I want to lay my head down and just cry about it. I feel sad and jealous sometimes, when I hear about someone else's kid - usually the same age as Thomas, or much younger - who comes up with some remarkable insight about God or the moon or just everyday cute conversation. I feel like I have waited so long - so very long - to know what my child is thinking and feeling and yet, I still wait. I wait for that train to come into the station - an apt metaphor for my train-obsessed child. To wait for something so normal that most parents don't even think about it twice - it's a bitter dish. For my child to have the normal, everyday experience of telling the grocery store checkout lady his name and how old he is - that is what I yearn for. And not to have sweeping judgments made on his behavior or what he has or hasn't done yet - there some things that are just so much harder when communication doesn't fully happen. He looks normal and healthy and oh so capable and thank God he is - he is! Sure footed and smart and funny and loving. So tall that people think he's five or six. I feel the worry pulsing from family members and push against it, thinking, I can't handle your worry. I have enough of my own. I worry that he won't be ready for kindergarten next fall, mostly. I worry that I haven't done enough to help him. I worry that we've been too hard on him for things he can't help or too easy on him. I worry that kids will laugh at him - that day will come, I know. Already his friends (that he asks to see, that he loves!) seem puzzled that he doesn't talk much or they can't understand him. 

There are breakthrough moments, yes. Recently, he was crying in his room. Sometimes he does this because he's frustrated with a toy but I went in to check, for he was crying bitterly. When I asked him what was wrong, he finally said, "Spider. I sad." And my heart soared, for THAT - that is what I've waited for. It turns out (I think) he was sad that "The Itsy Bitsy Spider" song was over on the CD he was listening to. 

The other day we walked out to the mailbox. This is great fun for him, sticking the letter in, raising the red flag. He is super interested in our neighbor's house and loves to run over to their driveway. Since we've moved into our house with a garage, he's gone through a phase where he was really frightened of the garage door. (It is loud and abrupt and BIG.) Now he's over that, since he is officially in charge of opening it and closing it via the remote control button we keep in the car. "Push the button!" he cheerfully announces when we turn into our neighborhood. But this day, Thomas noticed the neighbor's garage door was open by a small crack, and said, "Oh no! The door is open!" Again, this is everyday stuff for little kids, but for him, it's monumental. 

I know the key lies in accepting and celebrating who Thomas is, now. He's not your typical 4-year-old and most of the time I am truly okay about that. Sometimes his quirky behavior is so normal to me that I can forget it might not be normal to someone else. And we, of course, love him like crazy. We think he's just the best kid in the universe. A kid who loves trains and snowmen and Christmas and being with his grandparents. I try to remember, when the ground feels like it's crumbling under my feet, that we ended up together because God knew exactly what we needed in each other. He is the child meant for me and I am his mother and Beaux is his father for reasons we can't even know yet. It's going to be okay. I hope that one day we'll joke about how he never shuts up and as he reads me lines from a knock-knock book of jokes or tries to explain the intracacies of Star Wars or a Lego ship he's building, that I'll remember. And I'll never roll my eyes or sigh, but pull him closer and remember. I will breathe in all those words and apply them like balm to my heart, wrap them like a soft shawl around us both. 

 

Comments

[Willow]

There is so much courage and love in what you write here! Language is an incredible thing. I am sure your son will get there. My younger brother stuttered for many of his early years, and my parents said it was because I talked for him and he never got a chance to talk himself. I have no idea if that's really true, but he became very expressive and overcame his stutter, just much later than other kids (and now he's an articulate 31-year-old paramedic!).

I really like your writing and will be back to visit your blog!

[Linda]

I'm so glad he's got you for a mom and is getting the help he needs! Someday you will TOTALLY be joking about how he never shuts up and you'll appreciate it in a different way than most people. I think we're more thankful for things that have come via difficulty.

I remember being jealous of everyone who had ONE baby and didn't have to finish feeding/diapering/comforting a baby only to turn to the second one. We all have those thoughts, I think.

[Amy (frugan)]

Beautiful, Sam. No matter how much we adore our children and would never trade them, it's not easy when yours isn't doing all the things the other kids are doing. It sounds like you're handling the stress and worry with grace and love.

[Micha]

Thanks for sharing, Sam. My husband couldn't read until he was in 3rd grade...and then he became the guy who minored in Russian Lit and is constantly reading such hard books that I just roll my eyes. Maybe he appreciated (as only a child can) words so much more when they finally added up for him. You are a wonderful mother and I'm grateful I know you.

[Bethany]

Sweet Sam, my heart hurts for you... But at the same time, I can't imagine a better mama than you for Thomas. No matter what happens with his speech skills, he as a person (is there a better way to say that?) is clearly thriving, and to let your child grow up knowing that he's loved and that his needs matter is a incredible gift to him. <3

[el-e-e]

Oh, Sam! I am so glad you updated here. Of course I had no idea, not knowing you in person, what you have been faced with, which is a challenge but not an insurmountable one. It must be especially difficult for such a lover of, and an artist with, words like yourself. I know you're going to get answers and progress in this next year, and you'll all be so rich for having learned all these hard things. And I love thinking of you and Thomas, speaking in your very own language right now, that nobody understands but you. That's a blessing too. :) Big hugs.

[lizardek]

What a lovely, thoughtful post, Sam. You have a wonderful son...and he has a wonderful mom!

[Megsie]

I had been wondering about Thomas, but I was also thinking that the speech must have been doing some good...no news = good news, right? I am so glad you got him evaluated, even through the move and everything...why must EVERYTHING happen all at one time? I am also so happy that he is getting some therapy this summer. Just wait until the school year...you will notice the huge difference five days a week makes! I understand how difficult this is, to just want typical stuff. I know it is coming. And I agree with everyone else that Thomas has the BEST mom in the world.