Like Sunshine in a Darkened Room

For… well, for three years now, probably… we’ve been dealing with Stinkerbelle’s oral-motor issues, sensory overflow, and speech delays. While not nearly as challenging as some parents have it, it’s still been hard.

What’s hard is not just the day-to-day issues — not being able to understand commands and questions, not being able to eat food you expect a normal child to eat, struggling in overstimulating situations, not being able to keep up with peers — but it’s the grind of appointments with various specialists.

First off, we’ve been doing these appointments since That Girl was 18 months old, and fairly regularly, too, and we’ve made very little progress. You go, you follow directions, you work, and progress is slow. Most of it you make on your own, through sheer repetition and bull-headedness. There is a lot of frustration, many tears, and a lot of apologizing.

But what is even harder is going with your bright, funny, personable, wonderful child, time after time after time, and have people continually tell you how your child is not measuring up. How behind she is. What her failings are.

There’s a glorious, funny, charming, smart-as-a-whip kid sitting there, who has not met a person who she has not loved, and they are telling you she’s not good enough. Of course, that is their job — that is what they are there for — but it does not make it any easier to take. And then, they impart a couple of recommendations or tasks upon you, and send you on your way to cope and struggle and get through it on your own.

The worst of these appointments is usually around speech therapy. We go for an assessment regularly, let’s say quarterly. We started out with such hope for speech therapy, and it was a complete bust. With the exception of two nice SLPs we met along the way, both of whom went on mat leave after one appointment, it has been a largely negative experience.

But, this year in JK, Stinkerbelle has one of those nice SLPs coming to visit her periodically in school. She’s just been twice so far, but at least she’s there. And it was with great hope that today, we went to our quarterly assessment with the other nice SLP, Andrea.

And my friends? It was a really, REALLY good day.

My kid, who we’ve been told is in the first — THE FIRST– percentile developmentally in terms of receptive language (and most other skills), who ranked at the 13th percentile in terms of production, whose production was said to be around a year behind and lacking in both structure and pronunciation… my beautiful, funny, sweet, perfect 4 1/2 year old… she was a ROCK STAR with Andrea today.

She was answering questions in testing at the SIX YEAR OLD level. We’re talking in terms of sequencing, structure, grammar, EVERYTHING. I was thrilled. SIX YEAR OLD level. Sure, there were gaps. In every testing level on the way up, she was perfect or missed only one question, right up into the 5 1/2 to 5 years 11 months level. She started to struggle in the sixes, and time was running short, but she could have done it.

Andrea took everything we have been told and chucked it out the window.

Receptive language delays? She doesn’t think so. She believes it’s more a combination of structuring of the information coming in that Stinkerbelle is struggling to make sense of, and the inattention of a typical four year old (or, perhaps, a little more inattention. This we’ll have to keep an eye on.)

Pronunciation issues? She’s not seeing anything to be concerned about.

Grammar/structural understanding and output? DUDE. My kid answered questions posed in the passive tense, she made sense of comparative concepts with multi-step instructions… she’s CLEARLY “getting it”. There are holes, definitely. Prepositions are and have always been a problem, and with instructions like “put the block behind the bear” she will mix up the block and the bear. She gets opposites confused, like high and low, big and small, but she knows what the words mean so either something gets mixed up in context or it’s a matter of inattention.

INATTENTION. Dude. She’s FOUR. I EXPECT inattention. I can totally get behind inattention. And if it’s something more than that, we can work with that.

But all in all? Everything we have been told for the past three years got turned on it’s head today. It was wonderful. Andrea was so excited to see what she can do, how she is developing.

It was so wonderful to be told that our daughter, who we know to be really bright and smart, actually IS. She’s doing things years beyond what we’ve been told she can do. She’s not behind. She’s not failing. We’re not failing her as parents.

I cried with joy, with such relief, to have somebody FINALLY recognize what we’ve seen all along — just how bright and capable this kid really can be. That she wants to learn, is capable of learning, and has learned.

So many meetings with therapists and developmental professionals and teachers, so many conferences, all telling us how she is struggling, how she is behind, how she is not meeting expectations. So many times I have felt beaten down, and felt heartbroken that people just don’t see how bright our daughter really is.

And then in one hour today, so much positive. It was like somebody finally opened the curtains in a darkened room and chased away all the dust and shadows.There is sunshine and light.

My daughter CAN and HAS and WILL.

Sure, there is still work to do. I know this does not negate everything, that there are still issues — even in speech, there are issues we can work on, and Andrea and I discussed strategies to do that. But it was the first really, truly positive evaluation we’ve had in three years, and I am going to celebrate it for awhile.

Our bright, funny, wonderful daughter. She’s come so far, and she will go so much farther. And from now on, nobody is going to shake my belief in that, or in her, again.

6 thoughts on “Like Sunshine in a Darkened Room

  1. So happy to hear you are getting good news from your school SLP! If you read my post from a few days ago, you know that that’s my day job too. One of the best parts of my work is giving parents good news like that. Also?? I have learned over the years to listen to the parents – they know their child best. This sounds pretty obvious, but it needs emphasizing.

    (it was te Preschool Language Scale she was tested on, wasn’t it?)

  2. So happy to hear you are getting good news from your school SLP! If you read my post from a few days ago, you know that that’s my day job too. One of the best parts of my work is giving parents good news like that. Also?? I have learned over the years to listen to the parents – they know their child best. This sounds pretty obvious, but it needs emphasizing.

    (it was the Preschool Language Scale she was tested on, wasn’t it?)

    • I am not sure what scale it was — I should ask when we are in next. It was a flip book of pictures she had to identify things in, plus a few little activities with blocks and bears and such for prepositions and things. She had 5 questions per age and had to get a certain number wrong to stop testing.

  3. I am so happy for you all. I really struggled to find anything out of the ordinary when you were down this summer. Not that I question the professionals, but after interacting with her for two weeks, I knew she was not as behind as everyone said. It is so nice that Andrea saw the improvement and was able to be the one to pass on the good news. Be very, very proud of your daughter and yourselves. You have worked very hard with her day in and day out. And you are definitely not failing that child as parents. She is darn lucky to have you both. And we are so damn lucky to have this precious girl in our lives. Love you all. Great job everyone! Way to go Stinkerbelle.

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