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Wednesday, December 14, 2016

Holidays and kids

Sierra saw ENT and they were able to see that her tonsills are enlarged but not too much to require surgery.  The doctor suggested a sleep study to determine if that is the reason for her hyperactivity or if she would need surgery to help with sleep.  It was scheduled a few weeks after our appointment and she did so good!  The whole time they were hooking her up to everything she stayed so still.  She slept really well, only woke up once to use the bathroom and then freaked a little when she saw herself in the mirror.  We don't have the results yet so we'll see what we do from there.  She has still been taking dance weekly and loving it, and seeing her speech therapist at school and the Bountiful Rehab clinic.  She has been so awesome sharing a room with Keaton, they seem to play more together.  She has been so helpful and attentive to her brothers which is such a blessing.  With the holidays here, she has been so excited!  She's done a few Daddy-daughter dates; they saw "Trolls" and then had dinner at Famous Dave's one evening.

Keaton has been doing great with ABA therapy, he can now say:  cracker, ball, bobba for bottle, of course momma and dadda, the k sound for his own name, book and probably others I just can't remember.  He nods and says yes to every question, once in awhile he'll say no and shake his finger lol.  He will try to sound out the beginning of a word if he doesn't know it.  He was having therapy 3 times a week but the schedule got a little mixed up and it changed to 4 times a week so we had to quit our play2learn class early.  We also missed one week because the weather was terrible, so in all we missed 3 weeks.  It was every Monday at The Children's Center in Salt Lake and was so informative on connecting with autistic children.  Week 7 we had an OT come and talk to us about sensory processing difficulties/disorder and the different senses/systems:  tactile (touch), vestibular (part of the inner ear and brain that processes sensory input from eye movement and balance), proprioceptive (movement), vision and hearing.  She gave us sensory activities and ideas as well as good toys or objects and books to buy.  She gave us web resources and handouts.  Each system/sense can be either hypersensitive or hypo sensitive.  Too high is hypersensitive and too low is hypo sensitive.  It was an open discussion so the parents were able to ask questions and bring up examples.

Keaton was just approved for SSI (social security income) for having severe autism (level 3).  I had applied back in June so it was a long time coming.  We are also working on adding Keaton to our handicapped parking permit because he likes to bolt and wander wherever we go.  It's been hard with Keaton because not only is he 2 which is pretty tough, but he has these delays and sensitivities and trouble communicating.  If I don't stay right on top of him to keep track of what he's doing or needs, he can often get frustrated and have meltdowns, throw things, make messes etc.  I try my best but reality is, I'm a busy stay-at-home Mom and there are times he just needs to entertain himself or figure things out.  Just the other day I figured out he's been taking his bottle and spraying the remaining milk just randomly throughout the house.  I find dried spots on the kitchen floor, carpet, couches, bedding.  It's just one of the many frustrating activities he likes to do.  Besides flipping light switches on and off he likes to shut doors but then can't open them.  Church has been extremely difficult because not only is it during nap time but he has wide open spaces to run around in.  He has been waking up at 5:-5:30 for weeks now and it's been rough.  One super cute thing though is that he's been singing lately, really loud.  He loves watching music videos and that's one way to calm and also entertain him.  He also loves chocolate, sometimes he closes his eyes in such rapture lol.  

Carter's developmental pediatrician did add autism to Carter's diagnoses after discussing it with her team.  I have the prescription for ABA therapy, but with school I think I'll hold off until the summer or even spring break.  I don't know if he'll respond to it but it's worth a try.  Although Carter's main diagnosis shares a lot of commonalities and probably overall trumps the autism diagnosis, we still felt it was appropriate.  Usually Medicaid requires the IDOS testing for the diagnosis, but because Carter isn't walking on his own they weren't able to give it.  The pediatrician had to speak with someone at Medicaid to pass it through, so we could make sure the ABA would be covered.  Silly hoops they have to go through sometimes.  I don't have the perfect information, but when looking at an autism diagnosis they look for the following 7 areas.  They look for defects in social/emotional; they have to get 2 out of the 3 requirements but because of Carter's cognitive impairment, it was hard to know exactly.  Most kids are at least at a one year level for this area.  The next are defects in non verbal communication such as eye contact, gestures etc.  Carter actually has great eye contact unless he's immersed in a toy.

Another area is maintaining relationships, another is repetitive behaviors and you have to get 2 out of the 4 requirements (ie: hand flapping).  The other three areas are sensory, abnormal/focused attentions and flexibility in routines.  This doctor has been so awesome in working with us and getting things figured out.  Carter has been so touchy and cuddly lately, he actually lit up one day when I came home from an appointment.  It was very sweet to see that he actually cared that I had been gone and wanted to see me.  He sure is a sweet sweet boy.  At school and home he has been taking several steps all by himself.  I don't have it on video yet and he looks a little like Frankenstein, but how proud I am!  I tried signing up for skiing lessons with Wasatch Adaptive, we tried a few years ago too, but I don't know if it's going to happen.  We also just signed up for Mascot Miracle Foundation because they seem to have fun activities.

We had Thanksgiving at my sister's new beautiful home in Bluffdale this year instead of my parents'.  We were all there except one sister and her family.  We had a good time playing games including pie face, watching the Cowboys game and of course eating.  The food was delicious and the kids had so much fun together!  I got the boys new sweaters and Sierra a cute outfit.  We took corn, sweet potato souffle and a pecan pie (Village Inn).
The very next week the kids had pictures taken with Santa.  It was part of our Christmas from my parents'.  It was a terrible storm that day, it took us 2 hours to drive to the lady's house but, in the end, it was totally worth it.
With the Christmas season here, we had so much fun putting up the decor, lights on the house and the tree.  This year we started the Elf on the Shelf which has been fun, even if not that creative.  Sierra is the perfect age to enjoy everything about Christmas.  We also usually have an Advent calendar with a little chocolate for each day counting up to Christmas.  I also tried little candy canes in a countdown calendar but Keaton attacked that as well as the tree.  We were able to go with Chris's family (without kids) to see The Forgotten Carols for its 25th anniversary.  It was a very touching night even though I've seen it a few times before.  They did the mannequin challenge at the end which was fun.  Chris's mom had never seen it, so it was nice to help put it together.  We also celebrated Carter's 7th birthday last week!  He wore a birthday shirt to school instead of decorating his wheelchair.  He got one toy from us because they are so hard to find new ones for him and Grandma Thorup came and spent the day/night with us to spend time with the kids.
The next day Carter had his 7 year doctor check-up- he is very healthy and now 60 lbs.  Yikes! We also had The Forgotten Carols so we stayed at my parents' house since they were watching the kids.  Saturday afternoon we had Carter's ice skating party at Cottonwood's Park & Recreation Center.  We had a great turnout and so much fun!  It's also the first time I think Carter paid attention at his party and smiled when we sang to him.

Life is always moving forward at a fast pace and sometimes we scramble just to keep up.  We also sometimes miss events that can make us feel isolated or guilty but we can't always do everything.  I missed the Relief Society Christmas dinner, we missed the ward Christmas dinner (had just gotten home from a busy weekend), the Angel Hands Foundation Christmas party and also Chris's work Christmas dinner.  I have to remind myself with young kids with so many needs that, it's just part of the path.  I'm so thankful for the holiday season to help us reflect and pause on our blessings and the reason for the season.  I'm also thankful for my family, friends and the teachers both at school, dance, therapy and church that help teach my children.  It really does take a village.  Merry Christmas to all and a Happy New Year!

Coming Up:  Carters' yearly eye appointment, YW date, Johnson Christmas party, Celtic Women concert, Keaton's autism follow-up and Christmas!!

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