Motherhood and other creative adventures
So much to share about Atti’s birthday and first day of school, but all the words are currently plugged behind the snot occupying my brain. Today I am very grateful for the cold aisle at the pharmacy that is allowing me to drag my sorry self out of bed long enough to do what absolutely has to get done before I hack and sniffle my way back.
I have to thank you all again for your support and patience as we’ve dealt with this new phase of Atti’s life. My blogging has seriously suffered on those days when I just couldn’t bring myself to face the internet but I have felt your endless support to get through it.
It’s all done now. Last Thursday we had the big meeting with every specialist ever to get Atti all set up for services through the school district. It was incredibly strict and by the book because the legal requirements in these situations are stunning. Every time the coordinator stopped the discussion to insist that no decisions had been made and that they were all pending my approval I thought of all the parents who had fought those battles for me. At one point in the meeting I actually found myself getting a little emotional as I thought about the mom who must have fought to make sure that her child had a specific number of minutes the school was required to allow them to be with the typically developing kids. I thought of those Special Ed’s of my youth, the ones that haunted me when I thought of Atti attending them, and I wanted to meet that mother so I could kiss her feet.
I’ve also made peace with the school psychologist. After crying things out with one of Atti’s therapists, she helped me understand that his role is strictly to decide which class he should attend today. That means two things – 1) these tests are not diagnostic which means they don’t predict his future and 2) the psychologist has to make the assumption that any delays Atti has are based on cognition. While I and a few of his other specialists who know him better are sure that cognition is the last thing on the list, the psychologist has to assume it’s a mental delay so that they put him in the appropriate classroom. During our last meeting the psychologist explained that he’s just too little to test for all the different variables, so they have to wait until he’s older to get more specific.
Meanwhile, I’m even more convinced that Atti’s not intellectually disabled, he’s just a bit of a butthead. After failing to answer any question put to him on the tests and completely freaking me out, the other night Bear pointed to one of his letter blocks and asked, “What’s that?” Atti didn’t even hesitate. He said, “It’s a J!” He wouldn’t do it for the psychologist, but when he feels like it, he shouts the answer out with conviction.
Atti starts school on Monday and he’s going to love it. I need to spend this week getting him ready. I have to buy him a coat, and he needs a little backpack that will probably be as big as he is. I think he’s just going to zoom and before I know it I’ll have this little kid with all these new skills.
This week has been packed full with appointments. Atti turns three in a couple of weeks, and once he’s three he’ll start school. Before that happens, though, we have to meet with an army of experts who put him through a barrage of tests to determine where the best place for him will be.
Today we met with a school psychologist. He has the job of determining Atti’s intellectual ability and using that to recommend which classroom he goes into. It did not go so well.
Atti performed about the same way he always does on these tests, which is not great, but the tests are really not geared towards a child who has motor delays. Because there really isn’t a great way to test a child with motor delays. At least until they can speak fluently, which Atti can’t. We’re going back on Friday for another try, but I’m not hopeful. There wasn’t anything Atti can do that he wouldn’t do.
At the end of the meeting the psychologist said that he guessed Atti had an IQ of about 70. Which is considered intellectually impaired.
And I’ve been crying ever since.
I know he’s not right. I know that Atti is as sharp as a tack. I showed the psychologist how Atti can count to 20, knows the whole alphabet by sight forwards and backwards, can sing every song ever sung to him, but because he won’t express himself in the manner dictated by the test, it must be indicative of a mental retardation.
But what the test wants to see are things that all revolve around motor skills. He won’t stack blocks, he won’t push a toy car, he won’t do a puzzle, because all of those things are hard to do laying on your stomach and with limited fine motor skills. And all of the higher level stuff he can do doesn’t seem to matter. Those are “splinter skills.”
I’m just so angry right now. How in the world would you be able to determine how well my child will be able to learn based on whether or not he can stack blocks? My little guy has a bright mind, and it’s trapped inside an often uncompliant body. He has work enough to do, I’m not going to let anyone else make his road harder. I will not accept this.
Last night Atti and I were home alone together while Bear was off with the teenage boys at youth group. He’s started doing the most WONDERFUL thing where he’ll get tired of playing with his toys, crawl his way over to the couch, scratch at our legs and ask, “snuggle?”
Sometimes this is really code for wanting to be tickled until he hiccups, but last night when he asked for a snuggle, he meant a snuggle. We spent two delicious hours on the couch watching sappy old movies while we laid down together and I played with his hair. Heaven.
He popped his head up and looked me in the eye, pressed his sweet chubby hand to my cheek and gave me a kiss. Then he took both hands and mussed my hair up like I always do to him, in the process jabbing me right in the eye with one of those sharp baby fingernails.
He managed to scratch my sclera, so now I’m typing this one-eyed and wearing a patch to allow the eye to heal while tears are streaming down my face. After I hit submit I am officially banned from the computer until Monday to allow my eye to heal.
Which means a whole lot more Atti snuggle time. I think he might have planned it this way.
This is Atti and his little girlfriend Laney at a going away party. All the pictures came out blurry because I was racing to keep up with the cute in poor lighting conditions, but I couldn’t miss my opportunity. Laney and her family, including my friend Natalie, moved to Reno and left us behind.
Atti still has other sweet friends, including another little girlfriend Sarah, but it’s really hard to let go of Laney. She was always the first to rush over to him with a smile and a wave of her cute chubby hand, the one to fight to be next to his stroller when the class went on a walk, the first one to include him. And Atti adored her. He’d pet her pretty little cheek and say, “Awwwww….” and smother her with slobbery kisses and hugs.
Maybe it’s better if these two take a break from each other. I don’t know if I’d want to be dealing with a love this pure when they’re both teenagers.
We came home from our Christmas vacation to find my beloved Cheetara had died. She was a purebred and I feared she had kidney problems for a long time, but the vet said she was OK. I never felt great about that, but we weren’t in the position to deal with kitty dialysis, so I tried to hope for the best. She just ran out of best.
We got Cheetara and her sister Jem when we were in New Hampshire. I was sick and lonely and she became my best companion.
Absorbing my baby love during those long years of infertility,
Nursing me through those long years of illness
Keeping me company in the garden
And always being generous with her fuzzy, cuddly self.
She was the most affectionate cat I’ve ever seen
And gave me more than I could ever return to her.
I will miss her terribly.
I think sharing this “recipe” will give you a good insight into where my life has been lately.
It was a Thursday night, the week was seriously weighing on me, the grocery shopping and meal planning had been put off and put off until I found myself with chicken breast that had to be used THAT NIGHT, and all the vegetables I had planned on serving with it had gone bad. So I could either throw out the chicken breast and go grab take out, or I could go to the grocery store and spend the whole evening buying food until I was too tired and it was too late to do much with it.
Instead, I decided to experiment.
Bear tossed the chicken on the grill, I threw on a pot of rice, and I started ransacking the fridge. Not a single vegetable to be had, but I did have Parmesan cheese, and we always have our favorite caesar dressing on hand [side tip – for a nice quick lunch, caesar dressing is great on garbanzo beans]. Bear just ate his chicken and rice with bbq sauce and was happy as a clam, but I toasted up some croutons – one benefit of putting off the grocery shopping is that there’s stale bread on hand – poured some caesar dressing on top of the rice and chicken, and dumped on a big handful of cheese.
Then I took a deep breath and hoped it would be edible.
And it was better than edible, it was really really good. I’ll actually make this again. On purpose, even. If you start seeing chicken caesar bowls popping up on fast food menus, you just remember that I stumbled upon it first.
After months and months and months of waiting and phone calls and frustration and tears, today we have our big fat appointment with the special fancy doctor. I hope his signing hand is ready, because I’m walking in with a big fat stack of paperwork for him to sign, including medical releases for disabled license plates and horseback riding, prescriptions for walkers and standers and special seats, and maybe even braces. My little guy is probably going to be getting his own pair of “magic shoes.”
After this appointment, we’ll FINALLY be able to start therapy again, which means that he’ll go to therapy twice a week, his MOVE class once a week, and then horseback riding another day a week. Which leaves one more day a week for any doctor’s appointments. And, anything else I need to accomplish.
With how my own responsibilities have ramped up this year, I’m kind of terrified by the thought of having to accomplish all this. I have no idea how I’m going to get it all done, but it all has to get done. So….I don’t know, stop sleeping? I’m thinking that abandoning all attempts at hygiene is far more likely. And if I stop sweeping all the cheerios off the floor, then I can multitask by letting Atti feed himself with what he can crawl up to. There you go, I just found another hour in my day. Creative solutions. That’s what’s needed here.
The past six months have been really tough, often in ways that I couldn’t really share on the blog, and often in ways that I couldn’t even begin to put words to. I’ve been walking around with this huge weight on me that, despite my efforts to jump through hoops, my child not having therapy was evidence of my failure as a mother. As I type those words out I’m rolling my eyes at myself because it’s so painfully obviously false, but it doesn’t matter. The worry we feel for our children is rarely logical. Today is the day we cross through into that light glimmering at the end of the tunnel.
Thank you all so much for the support you’ve given me. I rely on my friends in the internet far more than you realize, and even though I can rarely respond to comments, they mean so much to me. I don’t know how I would have gotten through all this without you guys cheering me on.
To all of the people who marvel at what I manage to accomplish, let me tell you my little secret.
I may let things get away from me time to time.
Yeah, it’s not that I let my house get to the point where I can’t abide to live in it and there are no clean clothes to wear. No, no, it’s careful time management. Or something like that.
A few weeks ago it looked like Atti was going to start a preschool program right away. Due to school district boundaries and programs and red tape, it looks like that isn’t going to happen. Just when I got over my mama grief and was starting to look forward to a little independent time, we’re back together until February when he turns three.
In the meantime, we’ve started showing up to a nearby school a couple of days a week for a program they have where kids with special needs can hang out in a specially equipped gym and play for a bit with a special ed teacher. Since we are STILL fighting the epic battle trying to get his therapy started again, this was a little miracle.
I’ve been so discouraged lately with trying to get Atti care. I still haven’t even begun to fight the battle of dealing with insurance and getting his medical records transferred and finding another pediatric ophthalmologist. And then there’s getting him going back to horseback riding, which requires another doctors visit. It all takes way more energy than I can muster, so I’m trying to tell myself to fight one battle at a time. The most important thing is to get physical therapy started.
Atti’s gotten a little too comfortable at home. He used to love therapy and eagerly went to his therapists, and now he’s clingy and crying and not wanting to leave my side. Hopefully a few weeks of “school” will be just what he needs to get him all ready for the real work he’s got ahead of him in therapy.