Sometimes life just hands it to you. Hands you all of it. Everything life has. Sometimes that’s good. Sometimes it’s just really overwhelming. I’ve been in an overwhelming stage for awhile now. It’s a bit like you’re in the center of a large lake. The shore is there, you can still see it, but it’s really far away. Now and then you think maybe your toes can lightly touch the bottom, but overhead a bunch of gray clouds are gathering and you know that if they decide to burst and dump all that they’re carrying, the water will get so deep there will be no chance of touching bottom again. Your head is still above water, but you know you can’t keep this up forever; eventually you’ll go under. You just keep treading water anyway, because what else can you do?
The special education teacher at Alden’s developmental preschool suggested to me – in no uncertain terms – that I should pursue Alden’s official autism diagnosis. He’s had a provisional diagnosis since he was two, but she thinks an official one will help us get things he’ll need later down the line. It’s clear to anyone who spends even a short amount of time caring for Alden that he requires far more supervision and assistance than his neurotypical peers. I can’t leave him unattended for more than a few minutes without worrying that he’ll have carved into the floor or furniture with a sharp object, colored on a table with markers, broken one of his sister’s toys, or found some other destructive or dangerous behavior to engage in. I need to be able to spend time caring for Dinah, nursing her and getting her to sleep, away from the chaos of her incredibly sweet and loving but sensory-seeking and attention craving brother. When I am with Alden, it’s completely exhausting. The repetitive speech, the same scripts every day about vehicles and kitties, the meltdowns over every transition…it’s mentally exhausting to do every single day on repeat.
Thus, referral number one: the St. Luke’s Autism Center. All our paperwork has been submitted and we’re now waiting to hear back about a decision of which provider will be best for us and work on getting an appointment scheduled (which may or may not come with a wait list).
Referral number two is for Ellie. My sweet, brilliant, ever-positive, hard-working girl has been really struggling with reading. She consistently scores below grade level in reading (and only in reading), and has since kindergarten. In fact, her scores are lower now than they were at the beginning of the school year. That’s despite having spent six weeks going to school forty minutes early each day for extra help in a reading group. Her writing is also pretty bad. Sometimes, when you can tell she’s really focused and really trying, she can produce some relatively decent, decipherable words. Even then, there will be letters written backwards. Most of the time, I can’t tell at all what she has written. There have even been some startling moments when I’ve seen Alden’s handwriting rival hers for clarity.
I’ve been trying to raise my concerns with her teachers for quite awhile now, but it wasn’t until April that I was finally able to get them to sit down with me. Before that, they just kept dismissing me, brushing it off. The school now agrees that there is a problem. Her teacher implied to me in a very clear way (although she can’t say the exact words) that she thinks Ellie may be dealing with ADD or something along those lines. Her reasoning seemed to be because Ellie fidgets quite a lot. I suspect something more along the lines of dyslexia. It is clear that Ellie really wants to learn to read, and is trying very hard, but something is getting in the way of the light going on. Both her teacher and I have noticed that Ellie can tell you all the letter sounds, but once they are put together in a word she has difficulty transferring that information. Likewise, she can memorize a sightword (“right”) and be able to recognize it, but then can’t read a nearly identical word (“night”). Same goes for easy reader books that repeat the same words over and over: she’ll stumble through and finally get a word but then not be able to read that exact same word on the next page, and the next. There’s just no transfer. You’re starting over from the beginning each time.
I see all this through the lens of knowing that Ellie is still the youngest kid in her grade. It’s fair to expect her to perform below kids who are nearly a year older than her. What’s concerning is that I see her trying so hard to learn to read and still struggling, making very little improvement over the course of two years now. I have never seen a kid try so hard, for so long, without giving up. But I know that if something doesn’t give soon, if we don’t find a way to make some progress, she is going to get frustrated and that flame, that passion for learning, is going to go out.
So that brings me back to my meeting with the school about a month ago. When I first mentioned dyslexia, I was told the school district didn’t test for that. When I kept pushing and demanded a meeting, they finally admitted that they do test for reading disabilities – the exact same test (and perhaps even more comprehensive) as the one for dyslexia. They just don’t give an official diagnosis, but rather just say there is or is not a disability. By the time they gave me the meeting and admitted all this, however, they also said it was too late in the school year to do anything as there were only a few weeks of school left. This was immensely frustrating to hear, as it felt like they had been deliberately dragging their feet just so they wouldn’t have to address the problem. The best they were willing to offer is to come back next school year, wait a couple months until the next IRI (Independent Reading Indicator test), and then, if her scores are still below grade level, they would, “consider getting her evaluated.” Which means likely November or December, halfway through the school year. I left angry and frustrated and feeling like nobody wanted to help my daughter. They’re happy to let her slip through the cracks if it means they don’t have to provide any time, effort, or money.
So on Friday I talked with our family doctor, explained what was happening, and she’s looking into the best place to refer us to have Ellie tested, hopefully before school starts in the fall.
The reason I was at the doctor’s office Friday was Dinah. It was her one-year old checkup, where I was also filling our doctor in on how I had referred Dinah for Early Intervention services (the birth-to-three program available in every state, known as Infant Toddler Program or ITP in Idaho). On Thursday she had been evaluated by ITP and qualified for services in two areas.
Dinah’s biggest developmental delay is with eating. She is interested in the idea of eating, will bring food to her mouth, even chew it up a bit with her front teeth, but then it all just comes back out of her mouth. She doesn’t seem to be able to move food to the back of her mouth to swallow it. If something does happen to make it back there, she immediately starts gagging and coughing. We’ve tried a large variety of textures and consistencies with no luck. Just this past week or two she has managed to suck up a bit of breastmilk or water from a straw cup and (we think) actually swallow some little sips. However it is inconsistent and in such small quantities that it can’t be counted on as a way to feed her. Nothing solid has ever been swallowed. Dinah’s weight reflects this, as her Friday checkup had her at just shy of sixteen pounds. For reference, Dinah will be thirteen months old on Wednesday, and weighs as much as an average six month old.
Dinah also qualified for services in the area of speech. For the past couple weeks, she had stopped saying, “Hi!” which was her one for-sure word, and something she had been saying a lot before that. I’m happy to say that over the weekend she suddenly started saying it again. However, she should have a few words by now, not just one. She also has never done any “G” or “B” sounds in her babble. She has a few sign language words (“milk,” “more,” “all done”) that she uses, but doesn’t seem to completely understand the real meaning of.
So we’ll soon be starting interventions at home, with a provider coming to our house for an hour every two weeks to teach us what to do. In the meantime, I’m nursing Dinah every two hours, day and night, to try to get her all the calories I can. This means I’m exhausted. It also means I’ve been bringing her into bed with me and co-sleeping while I nurse her in an attempt to get a bit more sleep. As a result, my right shoulder is completely shot and my left is showing signs of following suit. When I was doing physical therapy last summer, they found I had entrapment of all the nerves and blood vessels to my right arm when in certain positions. This meant that when I moved my arm in certain ways, I experienced numbness, tingling and pain. The best way I can describe this, is if you stuck your hand in a bucket of ice and held it there for several minutes. Physical therapy was helping, but by August I stopped going because it was too hard to ever get there, what with having a baby who needed me around constantly as her only source of food.
A few months ago, the numbness and tingling was joined by intermittent pain in my forearm and biceps. A couple weeks ago that pain starting increasing in frequency and intensity. Now it’s constant, even when I’m doing nothing. I’m taking large doses of ibuprofen and dropping things constantly because my hands are too numb and weak to grasp things properly. So, referral number four was a new referral to physical therapy for me.
Autism. Dyslexia. Feeding and speech. Physical therapy. It’s a lot to juggle all at once, especially when you’re exhausted and in pain most of the time. All I can say is, thank the stars that I have Zach. Without his support, his willingness to also see the problems and agree that we need to seek solutions, his patience and love, I would have sunk in that lake a long time ago. He’s my buoy, my life vest. I’ll just keep treading water, waiting for all these referrals to go through so that all the various professionals can start towing me toward shore.