Neither of us had anything scheduled, so this week was 100% pure vacation! We went to the park a bunch, played out front, just had a blast.
Everything culminated in our RV trip at the end of the week. We were supposed to leave on Thursday and stay until Saturday. We were gonna leave after mom's meeting at Regional Center. The meeting was pretty strange, I guess. The doctor that mom talked to was pretty harsh, not really informed of my life circumstances, and not really interested in hearing mom explain why exactly she was there. Instead, he was accusatory, brash, and all around nasty. He even made mom cry! I guess towards the end of the meeting things turned around a bit and mom finally got a chance to ask for help. So, they came up with a plan of sorts to get my pediatrician on board with prescribing OT through our insurance. Once we see what our insurance will do, we'll see what we may need from Regional Center. Hopefully nothing, 'cuz it seems like that's about what their willing to give us!
Anyhow, we left Friday for the RV park. It was super fun. Our campsite was only a few steps away from the playground, a few yards from a lake, and surrounded by huge trees. The bummer...as the day grew on, it got hotter and hotter. So hot it got (pardon the rhyming, we're on a big Dr.Seuss kick these days!), that we actually had to leave late day and head for home. It was too hot to play on the playground equipment, too hot too walk around...TOO DARN HOT TO DO ANYTHING! The good news, we're getting much better at planning/packing/transitioning. We also know we like this park so we'll go there again in the fall.
Today was dad's last day of vacation. We had a great day. We hung out in the RV, then took a spontaneous RV "trip" to the park down the street! Winston got to go, and everything! We played in the water, on the playground, it was just awesome. When we got home mom went out and got us Del Taco and we all ate and watched TV in the RV until it was time for nap. What a fun day!
So, no complaints this week....it was AWESOME! Hope you had even half as great a week as we did! Oh, and Phil is still going strong....like I said, a GREAT week!
xoxo Saf
Here's some video of Nixi eating breakfast. You can see her use sign language when she asks for more (touching fingers from both hands together), as well as asking verbally for donuts!
What an exciting week, culminating in mom and dad catching our newest family member, Phil the preying mantis, out on the back patio! He's super cool, he eats flies! Its awesome!
So, it was a busy week. I had my early intervention session up at the therapy center. Saf was hesitant after the weird sessions we had up there a few weeks ago, but all in all it went pretty well. We got to take dad with us since he's on vacation. That was super neat!
I went to see the neurologist on Wednesday. LONG DAY! My appointment was at 8:30am and mom and I were up there until 11:30. I had to get my blood drawn, and that was horrible. I also was supposed to go pee in some crazy bag, but after an hour and a half of no potty, mom and I tapped out and went home. The doctor was really nice and mom seemed to like him a lot. He's scheduling me for an MRI, EEG, metabolic/chromosomal/genetic testing, and an eye exam. Got love a guy who's thorough! He diagnosed me with developmental delays and low tone. He said the reason I wasn't walking more than a few steps at a time is because of my lack of tone. Apparently low tone is a neurological issue....hence, the MRI. He wants the EEG because of Saf's history or petit mal seizures. All the other testing is just to learn more about me. Should be interesting! We see him again in 3 months after all of the testing is done and ready for review.
We had some great park days, despite the fact that its so very hot here. We kept cool in the fountains, 'cuz Saf is back full force and with a vengeance. We also had a few fun days in the front yard hanging in our little pool and even having a picnic! Friday we did a park day with our friends, Flyn and Greer. It was super fun.
Tonight we were watching a cartoon before bed. In it, there was a scene of real kids doing a school play. Mom told dad how much she'd love to see us in a school play and dad said he was just thinking the same thing. Don't tell mom, but I think I saw her tear up for a second. So, here's the plan, when I'm big enough I'm gonna get with Saf and we're gonna put on a play for them. It'll be so cool. One of these days...
So, we had a pretty eventful week. One more week to hang with dad before his vacation is over. This week we're gonna try to hit a river side RV park for an overnight stay...? Mom also has a meeting with some doctor at Regional Center to discuss Saf's services. Mom's gonna try to get more occupational therapy for Saf...which they historically don't provide. Fingers crossed. Make sure to check out my video below...have your volume up high so you can hear me counting to ten! Yes, taht's me...not Saf. Mom caught me counting quietly to myself and grabbed the video camera just in time!
Hope you all have a great week.
Peace Nixi
I can count...mom and dad suspected I could for the past few days...confirmed!
We had a great week! Lot's of park days because we're pretty much on vacation from all of our services. Nixi still has her Early Intervention once a week, but other than that we're easy breezy!
I have all but gotten over my fear of playing in the fountains with other kids. The band plays on! I went in the fountains twice this week, and even played right next to the boy that had started this whole thing by spitting in my face weeks ago! Nixi went down the slide 3 times all by herself...wasn't the most graceful decent, but it got the job done and she didn't cry.
Dad is on vacation so we're planning a trip in the motorhome in a week or so. Nixi has an appointment with a neurologist up at Children's Hospital this week so they can try to figure out why she's sliding out her leg, and some other stuff. It's at 8:30 in the morning.....luck be with you, neurology department! Smack dab at the beginning of what would be nap time. That'll be fun...NOT! I get to stay home with dad, thank goodness.
So, I suppose we'll have more to report next week.........this week was just a real easy, fun time. Just the way we like it!
Ahoy, mateys! Trusting your 4th of July was full of fun! Our was awesome. We opted out of the fireworks, but had great food and an even greater time playing in our new pirate ship playhouse...as you can see!
Last week was a really good one. Nixi took her first steps! They were pretty sturdy, but she has yet to get up the nerve to take more than 3 in a row...her current record. None the less, way to go little sis! Mom cancelled our Thursday session up at the therapy center so as not to risk ruining the place for us if it went poorly again. We scheduled Nixi's early intervention sessions with our beloved Teacher Lorene up there so we can still use the space, but with a more relaxed vibe. That'll be great! I had my last day of school, which was awesome. I wore my hair in pigtails...very cool. See, I have what they call "tactile defensiveness". What that means is that I'm uncomfortable with touch. The absolute worst spot in my body is y head. So, mom never thought I'd be able to wear hair clips of pigtails...but I did! And I looked cool!! Now I'm off for summer break and when I go back I'll be going to a whole new school. Mom's gonna take some video of it so in 6 weeks when I go back I'll know what to expect. Dad's gonna have 2 weeks off for vacation starting this Friday...that's really exciting. We love taking him to the park and showing off! Today at the park I approached a little girl, waved, and said "hi" with no coaching from mom or dad! I also played in the fountains....even with little boys there! Someone had a dog there and that was enough to entice me! Someday mom is hoping she can get Winston certified as a therapy dog so I can take him places with me, because I'm much more relaxed in the presence of animals. Hmmmm, I think Winston is gonna need a lot of work........we'll take our time on this one!
Also, we keep forgetting to tell you that I'm reading full books! Mom and dad knew I was reading sight words at about 2 and a half years, but I'm reading full books now! Not too shabby!!!! Besides the fact that I'm just plain brainy, some folks on the autistic spectrum have what's called hyperlexia. (You can be hyperlexic without being on the spectrum.) The doctor for the state who evaluated me thought I might be hyperlexic because of my love for numbers, symbols, and letters, and my ability to read words. Generally, boys are hyperlexic, so its rare in girls. However...I RULE! Sorry, had to toot my own horn for a minute. Just wanted to give an example of one of my special powers! I'm super girlie!
So, have a great week and will get back at ya next week!
xoxo Saf
Super fun day at the park...note my snazzy hair clips!
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...
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!
