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Wednesday, November 9, 2016

New & Old Things Plus Halloween

Pretty soon after Carter and I had strep, we found out that Sierra and Keaton got it too.  That was a rough week or two because we had to cancel some dates and fun activities.  Sierra had her speech assessment at the University of Utah Assessment Clinic by the speech pathologist there that I had met at Keaton's appointment.  She was amazing to work with; she conducted her tests and concluded that Sierra does have apraxia although it's mild.  What is apraxia?  It's a type of speech disorder that is present from birth and can cause trouble making sounds correctly and consistently.  Many children with the disorder have a family member with a speech disorder or learning disability.  Sierra has been receiving speech through her preschool as well as at the Primary Children's Rehab in Bountiful.  With consistency and patience, she'll be just fine.  Sierra has been enjoying dance and school, she has been writing her name so good and singing all sorts of songs.  She did lose motivation with the online preschool program, so I cancelled that.  We moved her into Keaton's room so now they share a room.  She was either with Carter or on the couch because she was afraid of Carter waking her up.  Keaton and Sierra already get along so well, they seem to have fun being together so much.  At her speech assessment, the therapist noted that Sierra's throat opening is smaller and her voice is higher pitched then usual for her age.  We are going to see ENT this week to have it checked out and possibly address any sleep issues as well.  Sierra can sometimes be bouncy and has a hard time focusing on things, especially during speech appointments, so instead of looking at ADD or ADHD, we're going to address sleep first.  I'll update on what happens with that.  We've also noticed some anxiety in her which we'll also have to watch.   

Carter got his new wheelchair from Shriner's!  This wheelchair is a lot lighter and smaller and it's a step up for him to have less support and more independence by learning to push the wheels himself.  It kind of rocks a lot and it can't seem to go over large curbs, but it's a nice change.  Carter had his yearly IEP meeting at the school and it went well.  A lot of his goals seem to stay the same because his progress is so minimal, but he is doing well and enjoying first grade.  He qualifies for ESY (extended school year) which is a first, because he seemed to regress with his walking.  They are really focusing on self-care, walking farther distances without a walker, just one-hand/arm for support and making choices from pictures for speech.  He has adaptive PE as well as OT, educational goals and some behavioral goals.  Not surprising because Carter loves to hug people so much.  He is growing so fast, he's over 57 lbs now!  We've had to put him in the L/XL pull ups now and he wears size 8 pajamas.  We ended up cancelling horse therapy for awhile because it was getting to be too much work for me.  Carter had his autism assessment appointment at the University of Utah Assessment Center, we met with the developmental pediatrician only.  Because Carter isn't ambulatory the psychologist couldn't conduct her testing, and because he's non-verbal the speech pathologist didn't need to do hers either.

Because of our insurance and its requirements for a diagnosis of autism and covering treatment, they had to go about this carefully.  It's also hard with a kid like Carter that can't communicate and show us his cognitive level or skills.  So I'm waiting to hear back from the doctor on whether an autism diagnosis would be helpful or appropriate.  Kids like Carter don't always do well with ABA therapy, so we'll see what they say.  1p36 deletion syndrome already has so many autistic tendencies that explains and also trumps an autism diagnosis, so it may not even matter.  At the appointment I was able to meet a worker there who has a 16 year old that sounded a lot like Carter so she wanted to meet us.  She was very nice and gave me some good advice.  Carter got his school picture back, it's absolutely adorable and on the side of the blog.   
Now onto Keaton, so much going on with him.  We put a hold on Early Intervention services (OT, speech, developmental therapist) because it's just more appointments that add stress to my life.  I feel like with ABA therapy which is three times a week and the play2learn class which is weekly, that that's enough for now.  With ABA therapy, Keaton has been doing so good at pointing to things to indicate what he wants.  He's also learned to nod for yes while saying yes, and is using more words.  He enjoys group and seems to do well.  I have had a hard time at home with him having meltdowns either because I'm busy or he's not able to communicate what he wants.  It can be very frustrating for us both but I'm still trying to learn what he needs.  He still loves balloons so much and going outside to swing or to go on a walk.  It seems the busier he is, the happier he is.  He loves playing with Sierra and sometimes going in his room and playing by himself.  Play2Learn has been skipped a few times because of the lady running the class being out of town, so we'll be going weekly until mid December.  Week 3 (which comprised two weeks) we talked about rabbit hole techniques part 2: theme and variation, helping them do it better and changing the sensory mode as well as the art of waiting.  LESS IS MORE.  Theme and variation is trying to extend the time of an interaction by presenting new ideas without taking control.  We're supposed to be in the passenger seat; we can still use our other tools such as waiting, narrating and parallel play which we learned in previous weeks.  I wrote about weeks 1 and 2 in a previous post- I'm writing this all down for me to remember and also if it's helpful for anyone else.

Helping them do it better is offering a different idea, again without taking control.  Changing the sensory mode can mean running a toy up and down their leg or singing a song with the game.  Sensory modes are very fun and desirable for children so it can help calm them down and interest them.  The goal again with these tools is to make it better with you than without.  Week 4 (which comprised two weeks again) was about going for circles.  Circles of communication is this- you open a circle with your child because you look at him- he closes that circle of communication by responding with a smile or saying something.  It is the back and forth process of communication.  Opening a circle means initiating an interaction and closing a circle means responding, also described as the 'pink-pong'.  Another example:  your child opens a circle because he points to something, you close the circle by getting them what they asked for.  These encounters are usually brief, so our goal is to keep them going and identify if those circles are being closed or not and who opens more circles.  It means BEING WITH, paying attention.  Of course life gets busy so I'm not always paying attention, but this has been helpful to notice if I am addressing his needs which also leads to less meltdowns.  We also talked about being a good floor-timer.  Our behavior strongly affects our child's behavior so we talked about things that can be helpful and problems or mistakes parents often make.

 Week 5 we started talking about Greenspan's first 2 developmental levels.  This will help us to know where they're at, what therapies would be helpful when and when we can expect Keaton to talk.  Level 1 is self-regulation and shared attention which can be deep pressure, rocking, doing things they love.  Level 2 is engagement and relation which can be imitating, peek-a-boo, cuddling, swinging etc.  We received a handout that showed us how a child can become dis-regulated throughout the day and how to help them.  We also went over how there are three types of children:  under-regulated which shows the cup has very little in it, also known as Eeyore.  These kids need something to stimulate them, get their attention before you can interact with them or teach.  The second shows a regulated child- their cup is just right, also known as Winnie the Pooh.  This is optimal for teaching and interacting.  The third is an over-regulated child, the cup is overflowing.  This is a child that needs help calming down before you can interact or teach.  The visual handouts really help to understand how children with autism are.  We want their cup to be just right but there are things that can set them off and we have to be aware of that and how to help them.  One of our next classes we're going to have an OT come and talk to us more about children's sensory and vestibular systems, I look forward to that.  Anything that can help me learn to understand Keaton and even Carter more.

This class has been so informative for me and has given me more patience with Keaton, especially in his harder moments.  Keaton had an assessment/testing again with another psychologist because SSI was requiring more information before approving him.  It was a couple hours long but she came to the same conclusion as his first testing, that he is autistic. She recommended that I focus more on the floor time techniques than ABA because it will help him more overall.  I was pleased to hear that because it's what we've been doing and learning.  We applied for a donated ipad for Keaton because he has autism and it could help with learning and speech, I hope we get it.  October was busy with not just appointments and therapy, but fun stuff too.  We had a few birthday parties and the kids went to a couple of trunk or treats, we went to Carter's school to see him in his parade, we went to the Ogden Dinosaur Museum, my mom had a cousins' Halloween party and then of course trick-or-treating.  I felt like the kids wore their costume several times last month.  They had a lot of fun and got lots of candy.  I was happy to put the Halloween stuff away after all of the activities and focus now on fall and being thankful.  We've been going on walks more and to the park, we also went to temple square one Sunday.  Now that it's Daylight Savings and it gets dark so early, we may not have as much time to get out and have fun.  Chris ended up getting strep as well which was odd because it was weeks after the rest of us got it.  My friend joked that we need zinc in our water.  I pray this is it for awhile.  

In the last month I have been quite overwhelmed and stressed, so I have tried to cut out things and simplify where I can.  We did drop the horse therapy for Carter even though I felt bad about that, we dropped Sierra's online preschool program because it was too much for her, I also asked to be taken off my visiting teaching assignments for a bit from my church as well.  Chris has one more class to get part of his CNC machining certification from school, and then he's going to stop to be home with us.  He is doing this to help me out and also to take time to find a better-paying job.  If things work out, he can learn more skills as he goes and he may not need to go back to finish the rest of the program.  We'll see.  Knowing that each of my kids' have a diagnosis and have and need therapy is quite overwhelming, and isolating.  I have learned that I can be really hard on myself and that I expect a lot from myself and others, so I'm trying to be gentler and more realistic with myself.  I've also learned if something is harming more than helping me, I have to drop it.  I treasure my alone time and am quite selfish with it.  Parenting is really hard, especially when your husband also has school and his plate is full and you have children with special needs that require so much extra.  I've said it before and I won't hide it when I struggle.  I want to be real, so hopefully it can help other Moms out there.  I'm trying to enjoy my kids and not worry about all the other stuff so much.

What's Coming Up:  Sierra's ENT appointment, SSI determination and Carter's ASD diagnosis, Thanksgiving, pictures with Santa, and Carter's 7th birthday

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