The day the music died...........

Ok, so turns out I didn't have strep....I had Roseola. In short; viral, causes high fever for several days then a horrible rash for a few days.

Feeling much better now. Mom cancelled my programming until mid-week so we could all just take it easy.

We got a chance to take dad to the park and play in the water fountains, that was really cool and also really special. See, when we go to the park one kid always seems to single Saf out and pick on her. A couple of weekends ago we went to the park and a little boy picked on Saf bad. She was playing in the fountains and she thought she was playing with the boy. When Saf plays with other kids she does a lot of motor imitation, meaning she copies their physical movements(check out the video). Its her way of engaging them because she wants so desperately to play but doesn't know how to spontaneously engage...typical of autism. She didn't realize the boy was being mean to her, splashing her and eventually spitting water in her face(check out the video). The first time was confusing for Saf. She knew she didn't like it, but she wasn't sure if it was a game. So, she kept "playing" with him and he spit water in her face twice more. She got really upset and afraid and wanted to leave. Mom intervened each time, but the little boy wasn't deterred and his mom was too busy reading to care. Either way, after that day Saf has been afraid to go to the fountains, particularly if there are boys playing in them. People with autism have a tendency to overgeneralize stuff. Saf is sadly no exception. So, at this point all boys in the fountain are bad...and she seems a little cautious of them in the park playground, too. Also, sadly, Saf generally has a really hard time reading strangers and doesn't usually know when they are being mean to her...another hallmark of autistic spectrum disorders. The great news was that the incident with the boy was the first time Saf has realized someone was being mean and asked to leave. Usually, kids bully her and she just gives up the toy or whatever it is the kids want and retreats. This was a huge milestone for Saf. The bummer for all of us is that we really like the fountains and want to help her not be afraid. So, dad ran through the fountains with her and she did great..........until a boy came to play (check out the video). So, at this point, the fountains seem sorta ok as long as there's no boys. We'll keep working on it. Saf's favorite thing in the world is the water fountains...the water is her music and boy can she dance and sing!

I had speech up at the therapy center and that was a little weird. I met my new speech therapist and it seems that her, along with my new case manager, don't think I need speech therapy because I have so many words (37 now!). Mom got a little frustrated. Its great that I have a lot of words....but I also have apraxia and low muscle tone. Nobody can say what that will mean for the future in terms of my intelligibility. So, mom wants help building up my tone and stuff. They gave her a hand-out. Ironically, its a hand-out written by my old speech therapist. I don't understand why they don't seem to want to help me. They agree I need help and have these issues, but they just don't seem to know what to do about it. So, I guess they'll wait and see and hopefully my speech turns out ok. Ridiculous. They also kind of acted weird about Saf. The case manager kept talking to her and moving stuff and doing all of the things that make using the therapy room moot....as they mess with Saf big time. So, eventually, Saf had a breakdown. They acted kind of shocked and wanted to know what treatment she was getting. It was really kind of rude. Saf didn't even have a meltdown, she just cried...no head banging, no nothing. You'd think these people have never seen a kid on the spectrum. Super bummer because that place has always been our solace. We go again this week, if its the same kind of stuff we'll stop going. There will be no point and it will be just another thing we need that gets taken away from us.

Saf had a fun day at school. She struggled in the beginning, as this was on the heels of the weird day up at the therapy center, but she pulled it together and just did great.

I don't understand why life is so hard. I wonder what it would be like to wake up in the morning and just feel totally ok. I wonder what it would be like to just run into situations with a smile and excitement instead of a tummy ache and anxiety. I know my sister wonders these things, too. I got no other way to say, it sucks. Having to fight every day to be happy and to feel ok is the pits and its not fair.

Ok, pity party over! Looking forward to a great week ahead and wishing you all a great one as well.

Peace
Nixi

Here's video of Saf doing motor imitation...see the boy wipe water from his face and Saf mirror his actions, also notice that the boy is already trying to intimidate her and she has no idea what's happening...........


Horrifically, mom caught the first spit on video....


This is from our visit this week....notice Saf's having a great time until a boy enters the fountains and she heads for the hills with mom in hot pursuit...

For Father's Day I give you.... one super sick baby! ENJOY!

Happy Father's Day to all the dads out there! For Father's day, daddy got a Vikings mug, a bubble machine, and one heck of a sick kiddo...Nixi has strep throat! Poor kid.

We had a pretty neat week. I had my second meeting with my new BIA and it went really well. I even invited her to play in the bed under the covers with me, Nixi, and mommy.
I think she's nice....we'll see what happens when she's working directly with me. At this point she's still asking mom a lot of questions and doing a lot of writing. Either way, I'm ok with it all so far. I had school on Wednesday and it was super fun. I colored a picture for daddy and went on the play structure and down the slide on my own.

Nixi's interventionists are on vacation this week so she got to take it easy all week.

We had a visit from our Nana Cummings and that was super fun. I was a total ham and showed off as much as possible. Nixi started getting sick, so she wasn't in the mood for company. We went to the park and I went up the play structure on my own and down the HUGE spiral slide. It was awesome. A really fun visit.

Mom and dad got me a terrarium. See, I get that bee's sting...the bummer is, I've kind of generalized that to all flying things. So, when I was at the park I started screaming like I was gonna die because there was a fly on the play structure. Had the same problem at school when I was a fruit fly. So, mom went fly hunting yesterday and caught me two big ones. Their in my terrarium, where I can observe them from a safe distance and hopefully get over my fear. They're actually pretty cool. I even game them some donut for breakfast!

So, all in all a great week...minus Nixi getting sick. We'll see what this week has to offer. Hope this blog finds you all well, and look forward to updating you all next week!

xoxo
Saf

Here's Nixi and me playing on our platform swing today...pardon Nixi's sloppy dismount, she is sick!

Nixi vs. Elmo pasta...Nixi wins....

Long, hot week ended by a great morning at the park playing in the fountains!

Saf got to meet her new BIA. She seems really nice and funny. She got a kick out of Saf and seems to really understand what mom and dad are hoping to get from the consult services. So far, so good!

I had my first cranio sacral massage. Now, in general, I'm not a fan of strangers at all. Really not a fan of being touched by people other than mom, dad, and Saf. Mom thought we'd be in and out, just a chance for me to get a feel for the place. Well, I surprised them all by letting the therapist work on me for over an hour straight. Didn't cry once, just a few fidgets here and there. It was SOOOOO relaxing! My therapist said my "inner physician is wise". Check me out! On the ride home I was singing along with a toy I had...really singing....like the words and everything! Mom was pointing out different flowers to me and I correctly commented that some where white. When we got home and I was swinging I asked dad to blow bubbles. When the bubbles went in my face I touched my head, shook it "no", and said "bubbles", because I didn't like them in my face. Now, I'm a pretty awesome communicator as it is, but I was unbelievable for the rest of the night. The next day, back to just being good old wonderful me. What an amazing night, though! Mom will take me twice a month. Unfortunately, it's not covered by insurance and its an ongoing kind of therapy....so, twice a month will have to do.

See, one of the reasons why mom and dad don't try every therapy they read about for Saf, or for my sensory and anxiety stuff is because most of its not covered by insurance. They could afford to take us to try most of the therapies. The problem is that, what if they find some that do a little bit of good, just enough to fill up the optimism tank? Mom and dad would feel remiss if they didn't continue in the hopes of bigger and more lasting improvements. And that, folks, is how parents of special needs kids end up depleting their 401k's, savings, etc. before their kid is 5 years old. Mom and dad try to be prudent in their decisions so that they make sure that we'll have enough money to have really good lives once their gone. Its really hard on them to make those calls, I can tell they want so badly to help us both be happy kids...balancing that with the responsibility and reality that we will also need to be well cared for adults is tough. If they had it their way we'd be on a plane to Mongolia to have Saf worked on by Shawmen, and I'd have cranio sacral massage daily. Always the little voice in their head taunting them, "maybe if you just go for this one, it'll be the silver bullet." Or, maybe not, and then we'd really be up a creek. So, we'll just try what we can at a pace that keeps our present AND future in mind.

The rest of the week was great. We had a really great time up at the therapy center doing OT stuff. Dad got to go to school with us and Saf on Wednesday, which was awesome. He got to see Saf request physical help from someone other than him and mom, for the first time ever! Saf had a great day at school on Friday, and we had a great weekend.

Hey, I can't complain!

Have a great week and wishing all the dads out there a super fun Father's Day on Sunday!

Peace,
Nixi
P.S. no video this week, camera was acting up but mom and dad figured it out today so more next week!

Free Bird.........

We had quite a week this week. There were a few days towards the end there where we were all a little out of sorts, but we pulled through the weekend in great spirits!

Because of the long weekend, we had a shorter treatment week. That was a good thing, because neither me nor Nixi were really feeling it by mid-week. We weren't sick, just maybe a little sick of schedules! You gotta take a break every now and again or it'll drive you crazy. With summer break coming up, we'll get a huge break...too huge, but it is what it is.

Tuesday was a bitter sweet day. We got to go up to the treatment center for Nixi's speech and OT an extra day. Sadly, we also had to say goodbye to our beloved speech therapist, teacher Jamie. She has been a part of my life since I was about 18 months old, she's been a part of Nixi's life since birth. We both got to see her twice a week, so we just took it for granted that she'd always be there. One thing I feel really good about is that last week I asked her for a hug all on my own, with no prompting, so I know she knows how much she means to me. Also last week, Nixi crawled over to her and put her head in her lap for a second, before freaking out and crawling back to mom. So I guess we both got to tell teacher Jamie how she special she is to us in our own way. We'll miss not seeing her every week, but mom says it's not goodbye...its just "see ya in awhile." That makes me feel better.

I had a rough day at school on Wednesday. It started off ok, I was having tons of fun playing with an Elmo toy with my OT Denise. I think I didn't have enough warning that my time was coming to an end because when mom's alarm went off I got super upset. I had a really hard time leaving and I banged my head a bunch. That made me feel even worse because I didn't want the people at school to see me so upset. I got embarassed. It stayed with me through to the next day. When we were up at Nixi's OT appointment I was still talking about Elmo and getting sad. The great news, though, is that mom talked to Nixi's case manager and got it so we can still go up to the treatment center every week! What a relief!

Nixi had some interesting stuff crop up. When mom and dad where holding her hands and helping her walk they noticed that her left leg turns all the way out when she puts pressure on it. She ends up walking in a big circle. Weird. We'll have to get that figured out.

We had a great weekend, though, and dad put up a new swing so we can both swing on the patio at the same time! As you can see from the picture above, I broke it in and had a blast doing it!

This week I meet my new BIA and Nixi has her first cranial sacral massage session...should be interesting!

We want to wish Cate a very special 2nd birthday...wish we could be there to help you blow out the candles and take your toys! Ok, maybe just the blowing out the candles part! Have a great birthday!

So, that's the highlights of our week. Hope you all had a great week.

xoxo
Saf

Seriously, who does Nixi think she is...the Coppertone puppy?!


Daddy tickling Nixi on the swing....