It wasn't easy, but we cracked the girls' password and hijacked the blog again. Ok, it was totally easy...all we had to do was give Nixi a juice pouch and she sang like a bird!
So, here we are...the parents. We'll be doing the blog for the remainder of Autism Awareness month. You all get weekly insight into the girls and their daily lives...now we get to share our thoughts on life and the bigger picture. If the posts this month seem rough, emotional, raw, depressing, or angry...that's probably because they are. As parents of two kids on the spectrum, life for us is often all of the above and then some, all so it doesn't have to be for our girls. The job of meeting all of their unique needs while simultaneously insulating them from their perceived "threats" and still exposing them to life, the world, and the joys of being a kid is tough...really tough. Its a 24-7 job, there are no days off and no extra pay for overtime. Its all overtime. Being an "autism parent" is very much a job, at times a joy, and always interesting. So, welcome to our world!
This week was a pretty good week. Like most, packed with lots of lows and some amazing highs. That's one of the rough things, the highs and lows. Kiddos on the spectrum, and ours are no exception, can go from absolute joy and delight to abject terror and panic in a matter of seconds. Typically it has something to do with a change in sensory input (landscaper with leaf blower at the park), a break in a routine (swinging only on a particular swing at the park, and someone is on it), or confusion (kids running by screaming at the park, friend or foe?). The girls recover from these high and lows much quicker than we do. That's the hard part, there's no time for us to digest the situation...when the girls are "back" and ready to rock we need to be too. Its a roller coaster that never ends. The highs are so amazing, I mean REALLY amazing and the lows knock the wind out of you.
Saf had some great days at school. She is starting to comment on what she does at school. This is a new thing and it's totally amazing. With a great deal of coaxing and some guiding the conversation she'll say who she played with and what they did. It goes something like this; "Saf, did you have a great day at school today?"--silence--"What did you do?"--silence--"Did you play with Carson?"--"Carson...Diego...yellow"--"Who else did you play with?"--"Alex...bottle"--"Oh, you played dolls and they drank from a bottle?"--"Brandon...trains"--"Oh, Brandon played with the trains?" End conversation. May not seem all that elaborate, but its huge. Saf is spontaneously recalling and sharing things from her day, and we've been waiting for that for a long time. Pretty amazing.
Nixi's Early Intervention case manager came by to work on her levels. This coming week she and Saf are due for their Regional Center updates where we go over their services, review progress, and discuss areas that still need to be addressed. So, Nixi got to watch Dora and that was ok with her! Poor Nix has been going through some changes lately. I think the girls have touched on them a little, so pardon any overlap. Having Nixi formally diagnosed with autism has given us "permission" to acknowledge that there are a number of her behaviors that are "autistic". Seems it has also given her "permission" to come into her own within the diagnosis. She has ramped up the echolalia (repeating words after you say them), has developed what we like to call deafness by obsession (so focused that she rarely hears us anymore), and transitions from the most basic activity to the next are earth shattering. She doesn't want to leave our home base. The house and the front yard are ok, everywhere else is not. She fights and screams with huge tears streaming down her face when we have to pick up Saf from school (used to be the most favorite part of the day), go to the park, store, most anywhere. She isn't a very visual kid, so Saf's visual schedule doesn't hold a lot of value for her in terms of giving her mental prep time before transitions. We'll have to find a way to combine it with something auditory to make it better for her. How we do that, we don't yet know.
We had an amazing outing to the pet store and park with friends who have 2 boys and 1 little girl, all on the spectrum. Their eldest, about 10, had a blast leading the girls around the pet store and pushing them in the swings at the park. Nixi told me, "No, mommy...boy...want boy please" when I tried to push her so Saf could have a turn with Sebastian. Later, Nixi leaned over Sebastian and planted a huge kiss on him. Apparently Nixi is into older men! It was the most fun they have ever had on a playdate, and the first time they have actually played with their play-dates...the kids wanted to play with them, and they wanted to play with the kids. They absolutely know when they are in the presence of other kids like them and they are visibly at ease and joyful. There doesn't seem to be that apprehension and anxiety that we see when they are around neurotypical kids. Its really cool. Downside, that night and the next day we paid for it with the girls being overstimulated and just emotional messes. We always pay for it in the end, but it was worth it and the girls got back on track.
April is a month of birthdays for us. Mike's birthday is the 4th. He got an early b-day gift of an evening at the sushi bar with me. Our first real date, just the two of us, in 4 years. It was awesome! The girls got an early birthday gift of a huge clubhouse bounce house. They are loving it! Check out the video! Not only is it cool looking and super fun, but its therapeutic. Running on the air filled surface gives amazing sensory input to the joints and muscles. Running and crashing into it gives deep pressure input(you'll notice Saf do that a lot in the video). The thing, as a whole, increases body spatial awareness...something both of the girls lack. Can you tell we put a lot of thought and research into the gift? A great example that there really isn't any area of our parenting experience that isn't touched by autism, sensory processing disorder, and special needs. Like I said, its a 24-7 gig.
So, I've dragged on enough for this week. Hope you check back in next week!
Sarah & Mike
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