These past few weeks have been a mixed bag. I'm beginning to think that's just the way of it really.
On the rough side, Pod's day care provider told us that she hadn't made eye contact or interacted with her all day. She was worried about taking care of a kid who wouldn't even look at her, mentioned 'autism', and basically implied that if things are the same on Tuesday, we were going to have to reassess Pod's place in her day care. That was depressing. In addition to that, Pod hadn't eaten, pretty much at all, the whole time she was there. It's hard to figure out how to proceed with something like that, because we chose to send her to day care for two reasons. Firstly that she'd get the chance to interact with other kids (hopefully helping her social issues), and secondly that I'd get a break from her to work on stuff that I need to work on. As you might imagine, this was upsetting on a number of levels, and it ramped up my worry levels quite a lot. What about her chance to learn from other kids? To be incentivised to communicate? But if she's not eating and not making eye contact, that's distress, right?
The next day was the polar opposite. I took her to the library for the story time and she wouldn't leave my person. Not just my side, but my person. She insisted on sitting on me and wouldn't stand up at all. At one point, she picked up the carrier, handed it to me, and signed 'all done'. I told her 'no', that we were staying for the story and that it wasn't finished yet. She looked like she was going to have a meltdown but held it together really well. Looking around that room with kids all dancing and exploring and just being basically all things 'Italy', I felt a little sad that my daughter was so 'Holland' by comparison. She'd been signing quite a bit and I was so pleased and proud of her, it had made me feel like the road was a little less arduous - you know, until I saw the other kids. However, when all but three children had left, she began to come out of her shell, and then we had a major breakthrough.
Pod played with those other children in an interactive way for the very first time. Usually when she's around other children, she does what she's doing and basically ignores them. If they interact with her, it's almost like she sees them as extraneous as opposed to being friends to play with. This time though, she played with them. Still not initiating, but she played all the same. I'll take it.
On the Friday we went to the Play and Grow group, a kind of activity group for kids in the Infants and Toddlers Program that Pod is enrolled in. Looking around the room it was a set of different feelings that I felt looking at those kids. I saw parents struggling with the same things as us, but hiding it under a veneer of hope and positivity - like us.
And that's the hardest part.
When they're very small, it's not so obvious that they're different, but as they get older, the lack of verbal skills, the avoidance of play, the flapping, the high pitched screeches of excitement that make other children look at them funny, and meltdowns, well that all begins to show. That's when the looks start and the insensitive questions, and EVERYONE knows better than you just what's up with your kid.
You work your ass off, you learn sign, you laminate picture communication cards, make schedule after schedule, do activity after activity, take them to places that you think will be good for their development. You do all of that, and then any improvement because of the hard work you put in is seen as 'oh, they're not that bad off really' as opposed to something that your family *fought* for, that you worked for every day.
The play was the most spectacular win for us this week, but more significant has been Pod's increasing use of sign. She's actually beginning to communicate what she wants to us, and it's been amazing.
So far, she wants to play with the 'Knock Knock Box' ALL the time. Well, mostly because she wants to figure out how to blow up a balloon and blow bubbles. She wants to go outside, ALL the time, and thankfully the weather is getting better so we can do that more now. She also made her first schedule for herself tonight - repeatedly telling us she wanted to go to bed (it was far too early, but she was tired from running around dribbling the soccer ball and playing on the playground).
E told us on Thursday that we need to start working on her initiative when it comes to play, and that imitation is a good thing when it comes to setting down the foundations for that in children. So yesterday, I got her to help me clean up, giving her a wet wipe so she could clean the coffee table while I wiped down the other surfaces. Then we each took our vacuum cleaners and did the floors. She likes mimicking things, so I'm hoping the garden we have planned for this year will also help with her initiative. Hopefully it makes for a good learning environment for her.
"You do all of that, and then any improvement because of the hard work you put in is seen as 'oh, they're not that bad off really' as opposed to something that your family *fought* for, that you worked for every day."
ReplyDeleteSo much of this. And it just gets worse the older they get. I got Charlotte from a five word vocabulary (mum, nan, pop, brubba (brother), from (depending on tone this word was used for everything) at age 2 to now at 3 being above the curve with her language skills through daily speach therapy and learning exercises which I started when she was 18 months (all stuff I learned on my own and undertook on my own as the professionals were still at this point saying there wasn't a problem) and I constantly get the whole "well she can talk, so her issues must not have been that severe after all!".
The only people I've met who 'get it' are our therapy team and other parents.
The daycare issue is a really tough one, if you work it out send me some ideas! Haha.
That's brilliant that she interacted with some other kids! That is a huge win.
I think you're doing an incredible job. You're doing everything possible to make your world fit your kid and to give your kid the tools she needs to take on the world, and that's all you can do. Parenting one oh o very right.
Keep your chin up!
Gom not from* was the fifth word
DeleteIt is frustrating to have your accomplishments not be treated as such when they're so hard fought for. When we had C tested through our public school system (at 4 yo), they wanted to give him the label of emotionally & behaviorally disabled (EBD, often found in abused & neglected kids) instead of autistic because he could talk. In fact, his verbal skills were off the chart, but he couldn't hold eye contact, decipher body language, understand figurative language, etc. All they could see was a kid who could speak, so none of the rest of what makes communication a 2-way activity was taken into consideration. I may be one of the few mothers who actually fought the system for the diagnosis of autism. Thankfully his teachers & my spouse agreed, so I wasn't alone.
ReplyDeleteAs far as the day care issues - I remember that well. We eventually found a special needs daycare run by the Quakers called Friends School. I know ours isn't the only one, you might want to see if you have one or something similar. Anyway, it's only for special needs kids. They had an OT on staff, used picture cues, social stories, small student:teacher ratio - they were wonderful. They helped guide us onto the right paths for intervention (OT testing, hippotherapy, social group therapy, etc) & helped us navigate that testing I spoke of earlier. That helped set us up for a year at a special needs public school here, which in turn continued to guide us into the perfect public school settings. Through it all, the right people helped us.
But, it didn't come on its own. I can remember comparing C's "Holland" to other kids' "Italy", and being heart broken & feeling like I wasn't doing enough. It's unfair to compare, but how can you not? So, there it is. No one else gets how hard you work to get whatever milestones there are...except your husband. I couldn't have done this without my DH's love & constant support. When I was too close to things & really down, he would pull me back so I could see the whole picture. He would remind me of where we were & could show me progress. We still do that for each other. You & your hubby have to lean on each other, because no one else sees it. Even other special needs parents, while we may empathize, may not see exactly what is a milestone b/c our journey is totally different, especially with things like autism (if that's what Pod has). What works today may not work tomorrow. I've often heard it said: "If you've seen one autistic kid, you've seen ONE autistic kid." It's such a weird disorder because no two autistic people will have the same reactions, symptoms, etc. C spoke fluently, but would have meltdowns, flapped, repeated phrases & songs ad nauseum. He never put things in a row, but he had to finish something he started. He rocked & hummed & had no idea where his body was in space (he still doesn't at 16). One of the things that helped us was putting him on a gluten-, casein- & soy-free diet. It was a struggle to figure out what all he can & can't eat, but his flapping, rocking, humming stopped almost immediately, so we were convinced. Now he's down to just being gluten-free, & he doesn't have to do that 100% of the time; we just have him watch how much gluten he has. (So, he can still say he's 'sans gluten' at the moment ;) )
I love your blog. Even though I've been through where you are now, it helps validate some of the things I've felt & done. Thank you for that. And, continue the good fight. You are an amazing mom, & Pod will only benefit from what you're doing. I wish I could say this is an easy trip, but it's not. It's full of heartbreak & loneliness (at least, that was my case), but it's also full of moments that took my breath away. I hope you find more of those moments than the latter.
Peace.
The last line should read, "I hope you find more of those moments than the FORMER." Sorry - fighting strep throat, & it's way late/early (can't sleep).
ReplyDeleteMore victories! And Boo to the day care for being so insensitive. :-'( I certainly hope she doesn't think for a moment that "success" and "progress" are straight-line things, because she'll have a lot of dashed expectations if so.
ReplyDeleteThanks for the update - I really enjoy reading them, and I'm SO cheering for you guys!