What a fun week for the girls.
Saf dyed Easter eggs and had an egg hunt at school. Teacher Jenn said she was a little bothered by the egg hunt throwing off the regular class routine, but once she got the hang of the whole thing...it was A-W-E-S-O-M-E!!!! She ran out into the grass and grabbed up eggs like a champ. She was so excited to check out her booty when she got home. Even more fun....she hadn't realized that the plastic eggs had treats in them. When I helped her open the first egg she was like, "Ohhhhh, so that's why some of the other kids treated the whole deal like a sport!"..."There candy and toys in them there eggs!". She had a great time looking in all of the eggs and did a wonderful job of sharing the experience with Nixi.
Nix had a pretty exciting week. Tuesday she got a visit from her Early Intervention (E.I.) teacher. Wednesday she went to the E.I. toddlers group for the first time. She had a blast! She buzzed around the room like she owned the place. So many toys and neat things to see. She never looked back to see where I was or to check in... kind of neat, until I realized she really wasn't looking for me at all. Typically developing toddlers will explore their environment, but with frequent glances or physical check-in's with their caregiver....many kids on the spectrum will not. Regardless, she was having a blast. She did part of circle time, sang, shook some maracas, and waved some pom poms. She loved it and we can't wait to go back again. Thursday she saw her Occupational Therapist and E.I. case worker...always a lot of fun.
Busy week for both girls. With the weather improving we got in some wading pool time and a few days playing in the Burger King kid's area. That's massive progress. We tried a to play in one of those structures about 6 months ago and it ended horribly. Saf panicked when other kids got into the structure and I had to scale to the top and get her down. This week she requested to go to Burger King to "play with friends". Each time we went there were anywhere from 2 to 5 other kids and she did great. Nixi focused more on eating, but she played a little in the structure and only yelled at approaching kids a few times. This brings me to the topic I wanted to touch on for this week....progress.
There is a myth out there that if a child with autism makes progress they must have never really had autism in the first place. When thinking about this myth, all one has to do is think of Temple Grandin (arguably the most "famous" living person with autism). Temple was completely non-verbal until the age of 5. She is now a doctored college professor and sought after livestock consultant...as she completely changed the way beef cattle are processed, thereby changing the entire cattle industry. All one has to do is watch an interview with Temple to see that she still very much has autism. However, on paper, she looks not only typical but exceptional. A true example that autism is different for every person, and, given the right opportunities and support anything may be possible. This is an important topic to discuss not only because it can be inspirational, but also because it highlights some of the challenges that some folks with autism face once they do show progress.
Given the country's current financial state, funds for state run programs are dwindling. Programs like Regional Center and Early Intervention are becoming more and more stringent in their requirements for acceptance. Just in the 2 odd years that we've been involved with them, the level of qualifying delay in a child has been increased, thereby removing service and support from kids that need them but are less "severe". As well, school districts are notorious for creating IEP's (Individualized Education Plans)to help students with disabilities and then discontinuing their supports once they make consistent progress. Predictably, studies have shown that once supports and services are removed many of these children not only return to their previous level of functioning, but some end up functioning at a lower level due to the stress and trauma of losing their supports. Regional Center does a psychological evaluation when their clients turn 3 to see if they will continue to qualify for services. It is not uncommon for kids with autism to be disqualified and diagnosed as not autistic simply because they have worked hard and made progress in the 1 to 2 years that they were in early intervention. There is this assumption that people with autism mature in a bubble and, while some slight changes may be expected, overall they essentially stagnate over a lifetime. This is bizarre, and totally untrue. Anyone, regardless of limitation, level of disability, etc. changes and progresses through life experiences and time. These changes and progressions may not be able to be rated on a scale like that of a child who grows up and becomes a doctor...but they are there, one just has to look for them. The absolute tragedy is when programs view progress as meaning a lack of need for services. Its like giving some with a broken leg crutches to walk and then taking them away a week later because they did so well the past week walking. That would make no sense, clearly the ability to walk is directly associated with the assistance of the crutches. Take away the crutches, take away the mobility. Why is is it any less ludicrous when people take away supports for kids with special needs. Take away the crutches and they will fall.
A child with autism will always have autism. It is a lifelong pervasive developmental disorder. There will be areas of progression, and there will always be areas of weakness. 80% of adults on the spectrum live with family members or in assisted living. However, there are vast numbers within that 80% who also have jobs, friendships, hobbies, etc. What it all comes down to is support. While people on the spectrum may require more intense levels of support than others, with those supports they can and do thrive.
So, I guess my purpose of this slightly disjointed rant (I'm tired...REALLY TIRED) is twofold. One, I wanted to highlight the shortcomings of the state services that we are forced to use as our lifeline simply because there is nothing else out there being offered. Two, I wanted to help you understand that my kids and kids like them will progress and change and grow up. Saf may scream and throw herself on the ground when she is confused forever, or she may not. She may do "happy feet" when she's 80...or she may not, maybe she'll just smile and laugh. Nixi may never sleep through a whole night, or maybe she will. She may never delight in the company of others, or maybe someday she'll delight at being in a room full of people that share a particular interest of hers. We don't know. The only thing we do know for sure is that our children will grow and change through all of their life experiences. While that may not look like typical maturation, don't for one second think they don't take in the world and learn from it.....just because they aren't looking at you doesn't mean they aren't looking.
With that...I'm outta here. Make sure to check out the videos below, some fun stuff and some very real stuff...all good stuff. Check back in next week for some great video that I was too tired to load tonight and to see how the girls' Easter, and Nixi's birthday, was. Hell, who knows, maybe I'll have some zzz's under my belt and I'll be a little more coherent.
Sarah
A little montage from Burger King............
It isn't pretty, but last year we decided that we wanted to include some "a day in our real life" video during the month of April....as we usually like keep to the videos light and fun on the blog otherwise. So, in keeping with awareness month we're including the following video. It shows a portion of one of Nixi's meltdowns. This particular meltdown was proceeding a transition...something Nixi, and most kids on the spectrum, struggle with. We were getting ready to leave the house. The clip is from the middle of the meltdown, which lasted roughly 40 minutes with intensity just as you will be seeing it from beginning to end. Nixi has between 6-8 of these daily, each averaging between 20-40 minutes...some a little shorter, some longer.
This is a short video that I found on a day where I just wanted to give up, run away, and cease to be. I could relate to every parent and every feeling in it, and I knew I wasn't alone...we weren't alone, and sometimes that's all you need to know.
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