J tends to function on the higher end of the spectrum, as his cognitive development is on target. All of this to say, that if you ask someone who has a child that has mental retardation and/or severe autism, their day is going to look a lot different than ours. There is a saying, "If you've met one person with Autism, you've met one person with Autism." Each individual has different strengths and weaknesses and the goal is to build on those strengths in order to mitigate the weaknesses.
Minus the 3 hours of therapy daily, our day is probably very similar to yours. We are generally woken by Midas (the black pug) whining and howling as soon as the sun is up and he hears the slightest bit of movement...usually around 6 or 6:30. K and I both open our eyes and say 'I hate that dog.' (most of the time there is a curse word inserted in there). This happens every.single.morning, and when it doesn't, I will not be the person that goes downstairs and opens the crate, because when it does happen, it will likely mean that Midas is no longer with us. Knowing my luck, this will probably happen when K is deployed and I won't have a choice.
Aside from that, I roll out of bed, brush my teeth, and marvel at how rough I'm looking. Our ABA therapist shows up at 8:30 and is here until 11:30, so I usually throw some baby powder in my hair, tease the shit out of it, throw it in a pony and if she's lucky, I put something other than pajama pants on. On a really, really good day, she might see me with makeup...she doesn't judge :) I'll eventually post some videos of ABA so you can see what it's like, but for J, it's play for the most part. For kiddos like mine, 'play is work, and work is play.' He doesn't mind learning all things tangible (his memory is amazing, so things like numbers, letters, shapes, and colors aren't an issue), but he doesn't know how to pretend play, or many times how to even play appropriately with toys, or how to interact with kids his age...we work on this.
Coffee is poured, J's breakfast is negotiated since he usually asks for something like salmon, 5 oreos, or fruit snacks...he usually ends up with some variation of toast and/or a banana. Diapers are changed, babies are fed, and we head into the playroom. This is it, it's the very front room of the house, if you looked in the front windows, this is what you would see. When you walk in the door, this is what you see...it's my favorite room in the house and I'll be sad on the day that we have to grow up and convert it to an office. The little desk and chairs are primarily where ABA takes place, so we spend a lot of time in here.
This is our morning routine Mon, Wed, Thur, Fri. We get lucky on Tuesdays. He goes to 'social skills' class for an hour and I drop him off there. This is run by an occupational therapist and a speech therapist and they teach the kids turn taking, answering questions, fine motor skills, speech skills, etc. J2 and I head to Starbux or the craft store, because I can always use supplies for some obscure project on pinterest that I will never get around to doing, and will inevitably end up going to Goodwill. I have good intentions, just bad follow through. Tuesdays are low key and sometimes we even get to meet up with a playgroup.
Since J is now 3, we no longer qualify to go through Early Intervention, and since his birthday falls in April, he won't be starting school until August. We are in the process of getting him enrolled in the developmental preschool program through the school district, and let's just say that we are cutting through some red tape at this point. This is our first go round, so it kind of feels like we have no idea what we are doing. This means he will be without his 1 hr of speech a week until August. I don't really mind this because it's one less thing and I actually think the ABA does so much more than the speech did. I might be missing something genius, but it seemed like the speech therapist always followed him around the house and enunciated what he was doing...J is 'jummmmp-iiiing.' I really liked her, but I don't think it did much...now I just follow him around and enunciate. I guess that's why he enjoys bonking us in the head with a pool noodle...but it's interaction and he loves it, so we play along and pretend to enjoy it as well!
We live a pretty typical life in the afternoons, we go outside and play, watch cartoons, hit up the park, etc. The kids still nap, so that's pretty awesome for me. The only minor blip is that J loves to look out the window in his room while he is supposed to be napping. His window is in the front of the house, and this totally sells me out if, for instance, some Jehovah's Witnesses show up at the door and I pretend not to be home.
We are lucky that J doesn't currently exhibit too many behaviors and is generally a pretty mellow guy. He does get easily overwhelmed in new situation and will withdraw and maybe stim (especially if there are any wheels in the vicinity). He is also really sensitive when it comes to spilling things, accidently running into people and having to apologize, if something breaks/isn't working, or if someone is yelling (it doesn't even have to be at him, he thinks it is and takes it reeeeaaallly personally)...think of a younger Kevin from the Steve Martin movie 'Parenthood.' He can also sometimes get really stuck on one thing...stairs, a certain slide, going back and forth over something, so we have to try to break that hyperfocus and help him learn to try different things. We use the phrase 'No big deal' alot! We are also really, really, really lucky that military insurance covers most of these therapies, as they have done a tremendous job of catching him up. As with everything involving insurance, there are definitely hoops to jump through, but in the end it's worth it, because you can't beat the coverage. Without it, ABA at the rate we are at would cost in the ballpark of $3600/month. We currently get 12 hrs/week, recommended is somewhere in the range of 20 hrs/week, and original studies were done at 40 hrs/week. This is why it's so, so important to try to push through legislation for coverage, as it can make such a huge difference for the kids.
When he was originally diagnosed, his language was assessed to be at a 6-9 month level, now, a little over 8 months later, he is almost up to age level. If you were to try to have a conversation with him, you wouldn't be able to because his language is pretty much all scripted and/or labeling of objects/activities, but he is now able to engage and get his needs met, so we are moving in the right direction.
I don't intend for this entire blog to end up being about autism. While it's a big part of our life, it isn't our entire life, but while it's still new, it want to give all of the background and basically answer the questions that many people have.
Lessons I've learned:
1. The crockpot is my friend
2. Technology makes most kids happy and I am not above turning on Nick Jr. for breaktime or handing over an iSomething if it's one of those days
3. My house is messy most of the time and I don't mind...there are more important things
4. Once the pugs depart, I will not get any more animals, but I will make the best of them while they are here.
5. Tell your kids that they are smart...every chance you get, it makes a difference, a big one. This is one of the first things that I noticed about the therapists at J's ABA center, they always tell the child how smart they are, no matter how big or small the task they have accomplished is.
6. I love Dr. Seuss and his words still ring true: Today you are you, that is truer than true, there is no one alive that is youer than you.
7. There are a lot of things to be grateful for.
8. I think I need a part-time job :)
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