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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!!

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




Wednesday, October 5, 2016

Busy busy


It hasn't been quite a month since I updated the blog, but it feels like a lot has happened.  Let's start with Carter- these adorable pictures of him make me smile!  His 1st grade teacher sent me the one on the left from recess at school, and the right is just on a Sunday.  I realized I don't take many pictures with Carter, and he is so smiley and happy.  Carter seems to be sick almost constantly since school started up.  He got strep a few weeks back and got this rash on his back and spots all over his face.  The spots came back it seemed after we completed the antibiotic, but the doctor said they look like acne.  I'm still not sure what they are, but he's still cute.  Right now he has a cold/cough that has been lingering.  He has been doing well at school and still doing horse therapy every week.  I love seeing him get excited for that.  My parents came up to see him ride the horses, and my dad was able to walk with him.  While I don't feel like I have a lot of time with Carter, he sure is a sweetheart.  He loves going on walks and flaps like crazy when he sees the bus coming to pick him up for school.  I feel like he's such a treasure and a blessing.  We were signed up to do a run/walk for Shriner's as a family, but that's when Carter had strep so we weren't able to go.  I ended up getting strep as well, blah.  So when we go on Monday to get Carter's new wheelchair (yay) we'll get his race bag anyway. 

This month we're going to start having some Young Women leaders and girls come to babysit once a month to help give Chris and I some time out.  I hope it will work out well and they will feel comfortable doing service and also will love getting to know the kids, especially Carter.  I think it will be a unique opportunity for these teenage girls to serve and also be around a kid with disabilities.  There is one kid in Carter's Primary class at church that is just so warm and welcoming to Carter- he lets Carter embrace him and is looking out for him and genuinely happy to see him there.  It's rare to see this and it just warms my heart and usually makes my eyes wet.  We recently had the Primary program in church, and Carter didn't participate in anyway.  I realized that people just don't know what to do and maybe communication is necessary in a lot of situations.  While I felt like he was not acknowledged and it did hurt a little, I also realized I probably shouldn't place any blame because they probably weren't intending to wrong or hurt us.  While at Sierra's dance class this week, a little girl probably 5 or 6 openly glared at Carter and gave him some pretty disgusted looks.  I was shocked at first and even angry; the mom was clearly oblivious.  I had to think for a moment, and realize that again, people just aren't used to seeing or being around people or kids like Carter.  While it does hurt, I have to realize that they probably just weren't taught.  This painting comes to mind as well as a quote I came across on lds.org:  “How are the works of God made manifest in these, our handicapped brothers and sisters? Surely they are manifest greatly in the loving care and attention given by parents, other family members, friends, and associates. The handicapped are not on trial. Those of us who live free of such limitations are the ones who are on trial..."-Unknown

Now on to Sierra- she is doing great in preschool, she loves going!  She is also doing great in dance, she looks beautiful and does well when I peek in.  She has gone on a few daddy/daughter dates- once to Winger's for lunch and once to see "Secret Life of Pets."  It's something I want to continue because it's important for our kids to get one on one attention, especially when our lives are so busy.  Sierra has been struggling to do her online preschool program in addition to everything else, so we may have to back out on that.  She is constantly singing her ABC's and different songs she is learning at school.  Her teacher said she is adorable and so talkative.  We have parent/teacher conferences next week, so I'm anxious to hear more.  Sierra had pictures on Tuesday, and today she had a field trip to the Sunset City Fire Department.  I was able to go with her, it was so fun to see her interact with her classmates and be so excited to have me there with her.  I feel like she is such a treasure, so helpful and lively and fun.  She loves to help push Carter in his wheelchair to the bus and is always looking out for Keaton and playing with him.  She has recently taken up sweeping.  Sometimes I pinch myself because she is my pride and joy.  It's been hard getting times that work with speech, but this Friday she has an appointment and also finally her appointment at the Developmental Assessment Center with the speech pathologist.  She has actually been doing great, so she may be just fine.  She had a small line in the Primary program and did great!

A lot of new shows have come back on that I love:  Law & Order SVU, Shark Tank, Last Man Standing, Once Upon A Time, Poldark (a new obsession), and the Mindy Project. This month I was able to go to a movie with my mom, breakfast with a neighbor, and dinner with my best friend.  It's always nice to get those free times to myself.  I went to the Instacare twice in just a few weeks- once because I got really dizzy and it wouldn't stop, so I had to take medicine, and another time for the strep Carter gave me.  The hazards of being a mom:(  Some things I have to look forward to is a surprise concert for Chris in December, The Forgotten Carols, and then a girls trip to Vegas in March 2017 to see the Backstreet Boys!  With the holidays coming things fill up fast.  We decorated for fall and Halloween and Sierra has been so excited about trick-or-treating.  With school back in full swing and our other activities and appointments, we are getting used to the new schedule again.  It takes some time, thinking and maneuvering on my part but so far we haven't forgotten anything...knock on wood.  We can't always do everything like play dates, family dinners, parties etc but we try to. I feel tired most the time and I'm hoping one day it will get better.  So I found out recently too that one of my best friends from high school moved to the city right next to me (they're small up north) and we were able to go to dinner and catch up which was lovely.  I feel like it was a tender mercy, something I needed.

Now on to Keaton- a lot to update here.  Still waiting to see if he qualifies for SSI, they are requiring more information.  Keaton is doing ABA therapy 3 mornings a week- twice at the center with other kids and it's called pals.  It's more of a play group with structure and expectations, and we just got to the point where Keaton doesn't cry anymore when I leave (knock on wood).  It's 3 hours so it's been giving me some much needed self care time 3 days a week.  They go to the park, have snack time and art time and work on goals.  He plays a lot with balls and bubbles of course, and they've been taking it easy on him while he gets adjusted.  The girl he had on Thursday mornings stays with him on Thursday at pals so he feels more comfortable.  The girl he has on Wednesday mornings at the house he's had a lot, so he knows her well.  His eye contact has improved so much, along with vocalizations and pointing to things.  He still needs some prompting and reinforcement, but he is doing excellent.  If you aren't around him everyday, you might not notice the difference.  He's also still doing speech every other month, OT/feeding twice a month and the developmental specialist once a month.  I feel like the one area he isn't improving on is feeding.  He used to do well with fries and goldfish crackers, but recently he's chocked or spit them out.  If you have a kid with eating difficulties, you let them eat whatever they will, seriously.  He's actually been napping better, I think all of his activities are wearing him out.

A few weeks ago we started a class called Play2Learn at the Children's Center in Salt Lake.  An old friend that I grew up with told me about it.  It's basically a boot camp for Keaton and I on autism and how to engage better.  It's based on the DIR Floortime by Stanley Greenspan (deceased) and Serena Wieder.  There are lots of videos about it on YouTube and also a book.  So, a speech pathologist by trade teaches the class over 10 weeks, instead of the original 10 month program.  So it is much more condensed.  We meet every Monday from 9-11:30, and Keaton plays with 3 other kids while I learn with the other 3 parents.  What does DIR stand for?  D is for developmental, I is for individual differences and R is for relationship-based.  What is Floortime?  It is a specific technique where you follow your child's natural interests, take his lead so to speak, and at the same time lead your child towards a mastery of social, emotional and intellectual capacities.  It definitely emphasizes the role of the parents and how they interact with the child.  It perfectly complements ABA therapy, because ABA is so technical and necessary, but Floortime is the fun and joy of learning.  It seems so simple but yet is so complex.  I could write for hours about what I've already learned.  Kids with autism are programmed differently than typical kids, and it's trying to look at it from Keaton's eyes and go from there.  How to engage with him and get him to interact.  Each week they videotape us playing with our child and then they give us that tape to watch, so we know what to work on.

As parents, we're learning each week a new concept or tool, as well as watching videos and discussing our experiences from the week and how to help each other.  Week 1 we focused on "Being With".  The goal was to establish a relationship and build feelings of trust and attachment.  Our homework sheet we were to write down how many sessions we did, what we learned, what were Keaton's favorite activities and what was his attention on, and what were his intentions?  A lot of kids with autism have comfort zones, and when they are doing these activities they don't really need anyone else.  So I learned that week what he liked to do, and did them with him.  At first he resisted which was normal, or bounced from one thing to the next, but then he got really excited I was participating with him.  ABA is a lot about coaxing him to do specific things, but this is about doing what he wants to do.  We did a lot of cuddling, playing with the strings on the blinds, playing with balls, swinging, etc.  Then we were to look at his activities; is it a cause/effect activity, is it sensory, it it sequence, or pretend?  Keaton has since sought me out more to play, and that was my aha moment for the week.  How important it is to just slow down, talk less, don't ask questions, especially don't ask why he's doing what he is doing.  Just quietly watch and participate with him.  What a joy those moments have been.

Week 2 is this week, and we are focusing on the rabbit hole techniques.  How to get our child to interact with us.  We are supposed to ask ourselves this week- why not?  If Keaton wants to play with water, why not?  If he wants to repeatedly hit the string on the fan or blinds, why not?  For whatever reason, that is something he likes to do.  He also loves to play with the water in the sink and turn light switches on and off.  While some of these things drive me up the wall, he enjoys them.  As I find little moments to spend with him, I am filling his bucket.  Have you heard of the love languages?  Each adult and child has one, and once we find out what their need is, we can fill their love bucket.  As I do that, hopefully the tantrums and mis communications will be less.  Even though we aren't actually communicating with words, we are with actions and our connection.  It's amazing what I've already learned.  I am profoundly grateful I have been able to participate in this class, even if it has added to my stress and anxiety and schedule.  I always want the best for my kids, and if you can start younger, all the better.  I am also grateful to my neighbor for helping me get the other kids to school on Monday so I can make it to this class by 9.  I hope one day I can help someone else out who is struggling to understand their child.  I feel like this will also help me understand Carter and even Sierra more.  Week 2 also has 3 parts:  "being with" from week 1 which is the foundation to this program and so crucial, narrating the activity but not asking questions (up, ooo, crash) and imitating/parallel play, copying what your child is doing.

A lot of times as parents we feel the pressure to ask a lot of questions, to need to have a purpose in every activity or second of the day.  But that can often lead to frustration for the child and the parent.  We have things we have to work on from ABA, from the OT, from the speech therapist, etc and we fill our days with so many things.  This is really teaching me how to stop and enjoy and simplify.  LESS IS MORE.  I found even after school that asking Sierra less questions and instead asking open-ended questions, she doesn't get mad at me and the transition from school to home is much more smooth.  So it is with Keaton- asking less questions and either being quiet or just narrating makes our playtime much more enjoyable.  The pressure is less on me, and it leaves room for imagination.  It's like I'm being taught how to play with my child, and it's amazing.  

Things haven't been all rosy and peachy though, most my days are constantly busy and overwhelming and I sometimes find myself in tears at the end of the day.  A lot of Keaton's behaviors can be immensely frustrating and cause clean up.  It feels like I'm not doing enough, or that I'm forgetting something or not measuring up.  It's easy to be hard on myself and not to be reasonable.  I do have control issues and OCD and anxiety- they are things I'm working on.  I'm open about it so people can relate.  I have high functioning depression and anxiety, but it doesn't mean I don't hit bottom sometimes.  It is easy to feel alone and down, to get upset.  I try not to let those feelings get to me.  I try to be positive and upbeat, especially for the kids.  I have to realize my life is different than I thought it would be, it's not what I expected, and that's okay.  I can mourn and grieve and get mad and even cry.  I can realize I'm not going to measure up to the physical therapist's expectations, or this person's, or that I'm not going to be able to volunteer at Sierra's school or this and that.  That I am just going to barely make it each day, by the skin of my nose.  That I might forget to brush one of the kids' teeth at night, that I might not get enough time to read to them, etc.  It is hard to get it all in in one day.  And it is really hard for people to understand my life, because it's not theirs.  That's okay.  I have moments that bring me to my knees, that make me weep because it is so hard, or because people are so ignorant or cruel, and it knocks me down a little.  I have moments with my kids where I realize I am not enough, and so I pray that God will pick up the pieces and let my kids know how much I love them and that I really am trying so very very hard.

I am not perfect, so far from it.  I have lists on my phone, my fridge, my computer, my nightstand...things to work on, things to do, things that are missing, important things, things that can wait, etc.  I have books waiting to be read, shows waiting to be watched, things in the house that need to get done...but slowly, I am doing what I can.  I know most moms experience this, I am no different.  I don't try to show off that I am so much busier or important, I'm just trying to get through life with some grace and love to others and especially to my littles.  I am trying to work better and not appearing to need pity all the time, to take ownership of my life, my decisions and my circumstances.  I have been focusing more on service and others struggles.  Thanks for reading, sorry it's so chaotic!  If I missed anything, I will update this post if I remember.  As always, feel free to comment or ask a question!

What's Coming Up:  Speech assessment for Sierra on Friday, Carter's new wheelchair on Monday, Carter's school pictures, Halloween!


Thursday, September 8, 2016

Back to School and Fall!

We've been trying to soak up the last of summer, even though I'm not too sad to see it go.  We've been to the park at Chloe's Sunshine Playground because it's an all abilities one, the kids love it!  We've been to the splash park and Carter is still riding his horses.  We thought we were about done with our scholarship and with Sierra starting dance, but I guess it will last a little longer.  Keaton rode the horse once and loved it!  Keaton finished services with his early intervention physical therapist.  Angie was great and so sweet but so glad to see the progress.  Carter saw GI for his yearly visit, it was so quick!  He's doing great, he is in the 70th percentile for height and weight.  Labs came back normal, always happy for that.  Carter also got his new Batman ankle braces from Shriner's and of course we had to get matching shoes!  Chris and my father in law fixed the van from my accident and it was able to pass emissions and inspections, so happy for that!  I have my van back!  It's amazing how much you can save by going to the junk yard and doing the work yourself.  Grateful!


Carter started 1st grade, we are so happy for him!  His bus drivers are new but his special education teacher(s) stayed the same.  She is awesome so yay for us!  He has seemed happy to be back keeping busy and being around friends.  I feel like I barely survived the summer with the kids, so it's a relief!  The first week was early out, but now he's back to 4 days from 8:27-3:50 and Friday early out.  Carter has started something new that I don't like and not sure how to deal with.  He has been exploring his diaper area and it's something that I'll have to learn to distract him from.  Oy.  His wheelchair was approved by insurance even though it's hasn't been quite five years, so it's now being ordered.  I think he'll love being able to push himself with the wheels!  He has an appointment in November to be assessed for autism, so we'll see what happens with that.  He has been waking up some at night for the past while, not sure why.  Change in the weather?
Sierra has been going to speech at the Primary Children's Rehab in Bountiful.  I love the lady she works with, she is so sweet with her!  She seems to be doing well so far, I just need to find time to work with her everyday.  We are still waiting on her assessment in Salt Lake to see if she has appraxia.  I hope she doesn't.  Sierra also starts dance next week, she can't wait!  It's a ballet/tap/jazz preschool class for kids age 4.  I've been wanting her to dance since she was 3, she will absolutely love it!  Sierra started her second year of preschool yesterday; she goes to Sunset Elementary in the Head Start preschool.  Several kids from last year are there and her teachers seem so nice.  My little girl is growing up!  She is almost 80% for height and in the 60% for weight.  She is also doing her preschool program online, it seems to motivate her to learn.  She will be busy in the coming weeks, that's for sure!  She has been such a big helper to me this summer, always looking out for her brothers and playing and being affectionate.  She balances me out, I don't know how I'd do this without her.
In looking for resources which I'm always on the lookout for, we went to the library in Roy on Saturday for sensory hour.  It was on dinosaurs and Sierra just loved it!  It's funny how I went mostly for Keaton, but she ended up doing better.  It's something I want to continue to do.  I found a great class for kids with autism through an old friend.  Keaton will be starting on the 26th for 10 weeks every Monday morning with me.  It will be like a boot camp of sorts, learning how to deal with Keaton's behaviors and such.  I feel blessed we found this resource and that we're able to attend.  A neighbor will be helping me get the other two kids off to school those mornings so I can just go with Keaton.  In the meantime, he's still doing OT, speech and meeting with the developmental specialist through early intervention.  ABA therapy (applied behavior analysis) also started last week, and so far he's seemed to enjoy having people come and play with him.  It's nice for me because I don't have to be with him for the session, I can come and go as I please.  They give me tips of things to work on at the end and I can always ask questions.  We've started with 9 hours a week, but can go up to 30 hours a week.  They have goals and things they work on with him, such as his tantrums and throwing things and rocking.  It will be good to keep him occupied while Sierra isn't home since he misses her.  We found out WIC covers Carnation instant breakfast which Keaton loves in his bottles, and I ordered some Boost puddings to help him get the nutrition he needs.  His weight is not an issue he is almost 80%, but with how little he eats I'm glad he is getting what he needs.  He is 40%ish for height.  The OT is addressing his feeding concerns and I hope he continues to make progress.  He has said 'bobba' for bottle, 'no' and 'dadda' this month, so his speech seems to be progressing slowly but surely.  He sure keeps me on my toes!

It's interesting how your parenting becomes different when you have children with special needs.  For instance, with Keaton, if he asks for something whether verbally or with gestures, we're supposed to instantly give it to him to reinforce his request and to keep him using communication instead of like yelling or crying.  They call it manding.  The ABA therapy is also a lot about restitution, so if he throws a toy he has to pick it up, or if he plays with a puzzle when he's done he has to put it away.  They like to reinforce and praise him a lot, especially with trying to communicate.  A lot of it is consistency so it can look boring but it's essential to how Keaton is going to learn.  As Moms we have so much to do in our day and it can be hard to pay attention to everything, but with Keaton I have to watch for those clues that could lead to a tantrum or clues that he wants something etc.

We went up to the mountains over Labor Day weekend, the kids loved it!  Even Carter who had to stay in his wheelchair because he couldn't just crawl on the dirt.  We didn't get to camp among a few other things this year that I wanted to, but it sure was nice to get out and be with family.  For my mom's birthday we surprised her by most of us meeting at Texas Roadhouse for dinner.  She seemed happy and surprised to see us there!  All 3 kids saw the dentist and did great!  Sierra was actually so excited to see the dentist, his assistant is the best!  She is getting some cavities on her bottom because she's miss independent and doesn't like me to help her brush or floss, so hopefully we can work on that.  It's fall and I already got my fall decorations and clothes out!  I love the crisp weather, pumpkins, scarves, boots and jackets and hot chocolate and leaves.  I can't wait for the fun activities too!  I've been reading some good books, trying to get out with my close friends when I can.  It's important for us mommas, especially those that have kids with special needs, to take care of ourselves.  Our new routine has just begun, but I feel like we'll settle in nicely and I can finally enjoy some peace and quite, here and there:)

What's Coming Up:  Sierra's dance class, Walk & Roll walk for Shriner's, Church Primary program, Keaton's Play2Learn group class, new wheelchair

Monday, August 8, 2016

Summer is Coming to an End

So, summer is coming to a close.  I have mixed feelings because I don't love the hot weather but I love the sunny days.  I'm also excited for school to start for Carter and Sierra so I can start focusing on Keaton's needs.  Just an update on things- I have another new nephew named Kyler, he is the 7th nephew for me.  Carter's new daffos are in at Shiner's, they are Batman decorated so I'm excited to see him wear them.  We went to Bear Lake for a day with the Johnson side, my mother in law's family.  My kids love water so they had a blast.  After one of our summer sensory friendly movies, I got into a minor car accident (my fault).  We are still in the process of fixing the van ourselves since the cost of the damages were close to what the car was worth, thence it was considered a total loss for insurance.  So, I've been borrowing my mother in law's van in the meantime.  I was without a car for a week or so.  The van has to pass inspection this month so crossing my fingers.  I hate car troubles!  We only ended up seeing 4 out of the 10 summer program movies because we missed the first week, and then the car troubles began.  Plus, Keaton had mini accidents every time we went so it just wasn't worth going anymore.  He threw a food tray once at a handicapped adult's head, oy!

We celebrated Keaton's 2nd birthday on July 15th!  We didn't throw a party because I was still processing his recent ASD diagnosis and with us living farther from family, I didn't feel like making everyone drive so far for it.  But, we had cake and went to the Clinton city fair.  Keaton had his 2 year check up and was 75% for height and about 50% for weight.  He is still seeing OT now twice a month and the developmental specialist once a month- we changed speech to every other month until he makes more progress.  I plan on adding feeding therapy back once school starts.  I also contacted the Children's Center in Salt Lake for their Play2Learn group; he'll start this fall or in January depending on space.  I applied for dspd (division of services for people with disabilities) so we'll see if Keaton qualifies right now for that- Carter is already on the list.  I also applied for ssi so there's a 4 month waiting period to see if Keaton qualifies- again, for now.  Things might and hopefully will change.  Keaton had some follow ups from his diagnosis appointment; he had a sedated MRI (brain scan) and ABR (hearing test).  It took up half our day but the good news is he passed both and was such a good boy!  His genetic test also came back normal.  It looks at certain areas of genes that are associated with developmental delays and autism to find possible causes.  There's a wiggly worm sensory processing class that I might sign up for as well in Salt Lake.   

 I finished a book called Bloom:  a memoir by Kelle Hampton that a friend suggested- it's about a mother's journey to acceptance and her grief process as she has her 2nd child and finds out she was born with down syndrome.  It was good for me to read because I still feel like I am processing Carter and his challenges as well as Keaton's now.  Carter has been doing good at home other than the occasional crying fit, but unfortunately we haven't been to physical therapy in July because of the car issues and being so busy.  It's hard for me to take all three kids and expect to focus on Carter.  I hope with school coming back he'll be able to regain any skills he may have lost this summer.  Carter will be in 1st grade, how crazy is that!  We've been school shopping for clothes, they outgrow their stuff so fast it seems!  Carter's horse therapy will be ending in the next few weeks as our scholarship ends- it's been a great experience, one I hope we can do again!  I filled out a mountain of paperwork to have Carter accessed just like Keaton was for autism, since I'm sure he's on the spectrum as well.  I should have done it years ago but didn't really think about it.  Having that diagnosis opens some doors for more services, but the wait to be seen is pretty long.  We are also waiting to hear if insurance approved Carter's new wheelchair- we ordered a zippy that will allow Carter to help push the wheels and have more independence.  It's been over 4 years since he got his first wheelchair and he's almost outgrown it.  It will be an exciting change!  
Sierra started an online preschool program through Waterford called Upstart.  We do it at home online 5 days a week for 20 minutes.  She has enjoyed it so far and looks forward to doing it.  She will start her 2nd year of preschool through Head Start soon; it will be 4 days a week for half a day.  We're also waiting on her speech assessments through Primary Children's and the University Assessment Clinic to address any concerns (possible appraxia) and possible adhd.  She is quite hyperactive for me at home and has trouble concentrating at times and falling asleep at night.  Her scores in preschool at the end of the year were low too, which could indicate adhd as well.  Part of it could be it's summer and everyone is here and things are busier, but the pediatrician has seen her twice and said girls exhibit signs differently than boys, so we'll see what the doctors say.  She starts dance next month, so I'm hoping that with the 2 preschool programs she's in and dance class, she will be able to tire herself out and calm down.  I just want her to succeed and not fall behind.

We went boating with my family at Jordanelle over the weekend, and it would have been so fun except it was so windy!  With 13 kids ages 7 and under, it was kind of crazy.  We got this cute picture of 10 of the kids in the relaxation station tube.  We were missing the three youngest grand kids.  Family is the best!
We just met with Utah Behavioral Services today to get approved for Keaton's ABA therapy, which I mentioned in my last post.  It's specific to kids with autism and focuses on praise and consistency.  Keaton does exhibit some behavior issues like tantrums over small things and needs specific ways to calm down as well as throwing things at people's heads and knocking things down.  I hope we can work on these things and work towards Keaton being more socially acceptable and age appropriate.  Right now my biggest frustration is that he isn't talking other than the occasional "uh oh" or "Momma" or "car" which we think is his way of saying "Carter".  Also, his throwing tendency has hurt Carter a lot as he is the main target and the objects or toys are heavy.  Keaton doesn't seem to understand "no" or "stop" or he does and just enjoys our reactions.  Trying to figure out Keaton will be a puzzle I think.

Besides just life and therapy and doctor appointments, family dinners, birthdays and baby blessings and the occasional escape to go out with a friend or have a play date...I am just trying to survive it feels like.  This blog is a great way for me to journal our activities as well as remember what's going on and express my feelings.  In this fast paced and technology driven world, we don't have enough time to just sit down and talk to people, have real deep conversations.  I care so much about my family and friends and kids that it sometimes feels like a full-time job just trying to keep in touch with everyone.  I definitely try to be a good friend and Mother and advocate for my children and research all the possible activities and things they can do that will benefit them, but is also affordable and feasible with my situation.  If I could, I would do a lot more than I already am but we can't run faster than we can walk.  I am trying to pace myself but my anxiety drives me to do more than I sometimes can, and then I end up feeling overwhelmed and take a day or two to recover.  Sometimes the simplest activity takes me a lot of time to consider and plan, that I used to be able to do fairly easily.  It seems like my capacity to handle things is getting lower and my threshold for noise and stress is also diminishing instead of growing.  I am pretty open about my feelings and issues and I have started seeing a counselor again to work through things.  I have so much free time to work on things, right?  Lol.

Anyways, thanks for reading, and always feel free to comment or ask questions!  The thing that gets me through the day is knowing how hard my hubby is working at his job and school, and how cute my kids are when they play together.  I often find Sierra and Keaton playing a game together giggling or Keaton and Carter playing in the same room.  That's my paycheck!

What's Coming Up:  Carter's yearly GI appointment, school starts for Carter and Sierra, dance starts, Sierra's speech assessment, Keaton's ABA therapy...
Also, now that the blog isn't just about Carter's journey with 1p36 deletion syndrome but also Keaton's journey with autism...ideas for a change of my blog title?  

Sunday, June 26, 2016

Appointments, Summer Activities, Keaton's Diagnosis

Again, this will probably be a long post, so stick with it if you wish.  Carter had his sedated ABR (auditory brainstem response) test.  We got in fast and smooth and it went great.  Both ears passed all pitches, so that was a relief.  When a child that is non-verbal or doesn't respond or always pay attention, a regular sound booth test and such doesn't always work.  The ABR is accurate and efficient; the only downside is putting them to sleep.  We went to St. George mid May for 3 nights and stayed in my parents' home there.  Most of Chris's family went as well and stayed in nearby hotels.  We went to the St. George Children's Museum and the nearby park and splash park.  The next day we went to the main street splash park then walked around Snow Canyon.  We got a nice group shot.  We  had dinner together at the house, then drove back on Sunday morning with a stop at Cove Fort where we had a nice picnic.  The kids did pretty good on the trip.

Memorial Day we visited my Grandmother's grave and then went swimming.  Sierra had her last day of preschool and Carter his last day of Kindergarten.  I wasn't able to make the graduation because of short notice, but I don't think he would have cared anyway.  Every June, South Jordan Country Fest has a parade, fair, free swimming and fireworks with a concert.  My mom likes the whole family to come down for it since we grew up in South Jordan; we consider it kind of a family reunion.  This year several of us had things going on but we went to the parade and fair.  Hoof beats to Healing received a bunch of tickets to the Odysseo by Cavalia show, and Carter and I got two tickets to go see it.  The show was incredible and it was a neat experience, even if Carter was a bit of a distraction.  While we went, Sierra went swimming with Grandpa.  That evening Chris and I went to dinner for his 30th birthday.  We stayed the entire weekend with family because we had a baby blessing the next day.  It was a busy but fun weekend.  For Chris's 30th birthday, we went swimming as a family, it was pretty low key.  He wanted to focus on the kids having fun.  He got a bike so now we can all go biking as a family. 


For the summer, besides horse therapy every Wednesday, the kids and I have been going to the Megaplex in Ogden to see a sensory friendly kid movie every Wednesday morning.  So far we've seen Minions and Pan.  It has been interesting because Carter has been the best while the other two wander all throughout the theater and don't really pay attention to the movie, but it's still nice to do something different.  So far we have been by far the most disruptive people in the theater.  Oh well.  I think it's awesome places do things like that though, so you can do something fun without having to worry about how your children behave.  Keaton loves the stairs and the lights.  Carter had his yearly appointment at Shriner's to see orthopedics, and it was a little crazy with all the kids with me but it went well.  His spine and hips look better than last year, so he's doing good.  His left leg is slightly longer than his right, so something to keep an eye on.  Carter is still seeing physical therapy outpatient twice a month in Bountiful.  Keaton is still doing all of his therapy, and for one of his last physical therapy appointments, we met at Chloe's Sunshine Playground in Syracuse.  It was built for a child with disabilities, so you can push a wheelchair throughout the entire park, and it had two handicapped swings and a musical area.  It was pretty cool to try it out.  Keaton loved walking around, Carter liked the swings and Sierra all the slides.  I love finding new things to try up north, since we're still new to the area.  Roy library does sensory hour the 1st Saturday of each month, so I want to try that out.  Keaton's early intervention group had a play day at a park in Layton; there were activities to do and it was right next to a splash park.  It opened when we left, so we'll have to go back and try it.  Sierra had a sleepover with her best friend and 2nd cousin; they went swimming, had pizza and played together.  Even though they're still young, it was fun to see them have fun together.


Fathers Day was busy but nice; we let Chris sleep in and made breakfast, then had church and went to visit both sets of dads down south.  Chris is a wonderful dad to the kids; he loves being with them and even after a long day at work and school, he wants nothing more than to be with his kids.  My dad is also a wonderful dad, he is involved and loves us all, and now is the best Grandpa.  He has a special relationship with my kids and they just love him and look forward to seeing him and being tickled or wrestled.  We got our access pass finally, it allows us free entrance into the national parks because of Carter's disabilities.  The summer has been a bit crazy with all the kids home and trying to keep them all happy and entertained.  Carter gets bored and likes to 'attack' Keaton still, and Sierra demands a lot of attention.  Being a mom is definitely not easy, and things won't be getting any easier for us.  Besides Keaton's physical therapy fading out, he still sees OT, speech and a developmental specialist.  I was feeling very overwhelmed so I dropped the feeding therapy for now since it's outpatient.  One less thing to worry about.  So, many know that Keaton has been in Early Intervention for over a year now.  He is behind in almost every skill, but he is making progress.  He was a late crawler and walker, and so far only says a few words.  I have been worried about him for some time and have been watching things he does that didn't seem typical or 'normal'.  Was he picking it up from Carter?  Was I just being paranoid because I already had a kid with special needs?  I was doubting myself and questioning people around me to see what they thought. 


So, I filled out some paperwork to have him seen at the University Developmental Assessment Clinic in Salt Lake.  That's where we started with Carter, although it was a little different at the time.  They told me once they got the paperwork, it would be 3 months or so to even schedule us an appointment, which would then be a 8-9 month wait.  I was shocked to hear that, but determined to get everything in quickly so he could be seen.  I prepared myself that he wouldn't be seen until he was about three.  He already had testing done through Early Intervention and feeding therapy, which showed delays but gave no answers.  When we saw Dr. Murphy last month for Carter, I happened to mention a few things to her about Keaton.  She seemed a little concerned as well, and suggested I call the clinic again and see if they could push him up.  I did just that, and they said they were doing some new things and kids under 3 with delays and concerns would be seen sooner.  I was told that he'd get an appointment by August.  I was very happy to hear that, so I waited.  Just a week or so later, they called to schedule Keaton for an appointment.  We just had to wait 1 1/2 weeks to get in.  They are doing clinics once a week where you get to see all the specialists in one sitting and leave with a diagnosis or answers.  I left the other two kids home with Chris and just Keaton and I went.  We filled out paperwork for probably the first 40 minutes in a play room, then saw audiology.  Keaton had just had his post op appointment with ENT for his tubes that were placed, which looked great, but they weren't able to complete a full hearing test.  They tried again, and he did pretty good.  The age is hard because they won't stay still.


Next, we saw the speech pathologist.  She had me fill out more questions and watched Keaton play while she conducted her testing.  She told me she was concerned, obviously, because he wasn't speaking or using non-verbal ways to communicate.  She also got the chance to see him eat a snack, and was concerned with how he ate.  He wasn't using his jaws or tongue to move things around, he just uses an up and down motion.  She said he could have appraxia which is a type of speech disorder that causes trouble when making sounds correctly and consistently.  She also mentioned he could have dysarthria, which is a motor-speech disorder that makes it hard to use or control the muscles of the mouth, tongue, palate and vocal cords.  This can also affect chewing and swallowing.  She said since he isn't speaking much yet, she'd have to wait to see him again in 6-12 months to evaluate.  The main thing that surprised me with her visit, is that one of Sierra's speech therapists mentioned she could have appraxia, and I was told it can run in the family and is present from birth.  So, now I'm going to have Sierra see this speech pathologist, because not every speech professional is trained to diagnose appraxia or even work with it.


Then we had a break and saw the psychologist.  She was an older lady but very kind.  She interacted and played with Keaton and conducted her testing.  She explained everything to me and what she was looking for, and asked that I just observe unless he needed comfort, which he did twice.  She explained to me her concerns, and then we had another break before we saw the developmental pediatrician.  By then, we had been there about four hours and we were tired and hungry.  Keaton fell asleep on me while we talked, so she wasn't able to see him play.  But based off the information I gave her and what the others observed, she was able to see where he was at.  We went over his early intervention testing scores and some more questions she had.  Then she told me to wait while they all met together to discuss their findings.  We went to the play room once again, where another mom and her daughter was also.  It was nice to have someone else to talk to while we waited.  Keaton was an angel during this whole process; he didn't throw fits and was quite congenial.  We went back in to talk with the pediatrician, and she said they had diagnosed Keaton with autism spectrum disorder.  Their tests were all to see if he met enough criteria to qualify, and he did.  Yes, he is still quite young, but the benefit is we can start getting him more help now and be ahead of the game.  The doctor said she knows adults with autism and you wouldn't even know it.  She said right now, because of his speech issues and feeding problems, that he is rather high on the spectrum.  But that can change.  At the risk of writing a novel, I will leave it at there.


I was not surprised to hear the diagnosis, because it's what I was there looking for.  It validated my feelings and concerns.  Now we had a direction to go and things to do.  Not everyone that goes to the clinic is diagnosed.  It means Keaton will get more help in school and hopefully more understanding from those around him.  People might get confused with this diagnosis because he is cuddly and does make eye contact.  The spectrum varies and there are so many different types.  So what's next?  We might get an MRI to see if Keaton's brain has any abnormalities to explain why he is so delayed.  There's a 10-20% chance they'll find anything.  We sent off a genetic test to see if they find anything, even though it definitely wouldn't be Carter's diagnosis.  We also need to set up and start ABA therapy (Applied Behavior Analysis) which is specific to autistic children.  Thankfully they come to our home to do the therapy.  There are other resources and things I need to look into, but we have a good head start.  Technically, Keaton has 5 or more diagnoses:  autism spectrum disorder, severe expressive language delay, feeding difficulties/dysphagia, gross/fine motor delay and sensory processing difficulties.


What is Autism Spectrum Disorder?  It is a neurodevelopmmental disorder that is characterized by repetitive behaviors as well as difficulties in social interaction and verbal and nonverbal communication.  Some or all of these behaviors are present from early childhood and affect daily functioning.  It is important to keep in mind that ASD is NOT caused by anything the child's caregivers have done.  There is no cure, but therapy can substantially improve symptoms.  The term "spectrum" refers to the wide range of symptoms, skills, and levels of impairments in functioning that can occur in those with ASD.

If you have questions, feel free to ask me, I'd be happy to answer.  This is not something I'm trying to hide or be ashamed of.  Like my mom said, he's still Keaton.  The Keaton that loves to play with balls and bubbles and smiles and cuddles and does funny things.  I've gone through a range of emotions in the last few days, and I'm sure that won't stop anytime soon.  We'd appreciate prayers for strength and understanding and patience, as our current load seems extremely full, especially being farther from family and already having Carter and having him home during the summer.  I feel very thankful for the doctors and that we were able to be seen so quickly.  They are extremely skilled and trained as diagnosticians.  I am thankful for the answers and that I can feel more at peace.  Thanks for reading this and being a part of our lives!


What's next:  Carter gets new daffos (ankle braces and possibly a new wheelchair), Keaton's 2nd birthday, Carter's GI appointment, therapy therapy therapy...








Wednesday, May 18, 2016

Busy and thoughts

My brother and his wife had a beautiful daughter named Tavia, and Sierra was so excited to go with me to meet her!  Darling little thing with lots of dark hair.  Sierra's swimming class ended, it was only four weeks but she really enjoyed it.  Carter had his sleep safe bed extended for safety, because he's getting so tall.  With the mattress on its lowest setting and the side up, he was getting close to being able to fall out.  We're thankful for insurance and National Seating & Mobility for helping us out.  Keaton had his ear tubes put in; we had to be there really early.  He wasn't too happy when he woke up, but it was a quick procedure.  He had an ear infection in his left ear that they cleared out and fluid.  The funny thing is, he hasn't acted different like he hears any better.  His post op appointment and hearing test is beginning of June, so hopefully it will show he's hearing well.  Keaton started OT with a great therapist that comes to our home and speech therapy.  Combine that with his feeding therapy and developmental specialist, and I'm feeling a bit overwhelmed with appointments and to-do activities.  We tried a bunch of water beads for sensory play and he loved it!  Problem is, they ended up everywhere!  

Keaton is pretty delayed in most areas of development, which is concerning to me especially as the mother.  While I feel like I'm doing everything I can and should, I don't feel up to the task.  And it feels a lot like deja vu.  I've done a lot of this before with Carter, but it's different this time.  We don't know why Keaton is delayed or if he'll just catch up and be fine.  I admit to giving in to feelings of feeling bad for him and myself and wondering why I have to go through this again.  Wondering what I did wrong and getting tired of peoples' stares and questions.  He'll be 2 in 2 months and all he says is 'uh oh' and still walks slow and slightly spread out.  I turned in paperwork for Keaton to have a developmental assessment at the Children with Special Needs Clinic; they said he should be seen by August.  In the meantime, he is doing some good things.  He is using his teeth/jaws more when chewing food and playing with food and trying new things.  He is really good with a ball and likes walking on different kinds of terrain.  He is sleeping better at night (knock on wood) and napping well.  He is attending to tasks more and paying attention.  I sure love his huge smiles and cuddles.  No matter what, I love that little boy fiercely.

Miss Sierra celebrated her 4th birthday!  It seemed to last an entire week because her birthday was on a Monday.  I was a mean mom and took her to the pediatrician (3 shots ouch!) 50% weight and 80% height, then had cake/presents, and Daddy took her to Layton's Surf n' Swim to ride the waves on tubes.  The next day, she went to Grandma Devey's for a sleepover.  They went to the mall and she went to Build a Bear where she made a pony named Brownie.  I was surprised at her choice but thought it was cute.  She had such a fun time playing with her Grandma and cousins!  Thursday she took cupcakes to her preschool class where they sang to her, and then Friday was her birthday party.  We had a tea party with dolls at Gardner Village's Georgell Doll Shop.  We had a room reserved just for us (so cute!) and just her girl cousins were invited.  They had 'tea' (strawberry lemonade), sandwiches and cupcakes.  We played Tea Bingo, pin the teacup on the doily, took pictures and opened presents.  The girls were fascinated with pouring their 'tea' and walking around the shop and outside.  It was the cutest and most feminine party, perfect for my princess!


 Sierra had her last day of preschool and is still doing speech therapy.  She has articulation issues and perhaps more, we're not sure yet.  I haven't liked her first two therapists, so we're waiting to see another one at Primary's outpatient clinic.  She's such a big helper and a great sister to her brothers.  She loves to pretend play with dolls, ponies, anything!  We visited Wheeler Farm one evening and got some cute pictures of the kids.  They loved riding the wagon.  She mostly says "play with me!" and "You're my best friend".
Mother's Day was a quiet affair- I slept in a little and Chris made me breakfast and gave me a card with gift card.  We had church where the Primary kids sang (Sierra loved being up on the stand), and then dinner at Chris's mom's house.  I had brunch the Friday before with my mother in law, her mom, and my two sisters in law (the younger 2 were at school).  Keaton's physical therapist told me about a gym that might be fun for him while also working on his development, so we decided to go and try it out.  It's called Lil' Flippers Gymnastics & Gym.  They have a mom/kid class for the littles and then Sierra joined the older group.  Keaton wasn't able to do a lot of what they do, but perhaps with time he will.  They did a few courses with trampolines, slides, crawling on ladders and through tunnels etc.  Sierra loved her class; we'll have to go a few more times!  We got our family passes to the zoo (thank you Angel Hands Foundation) and to the Tree house Museum in Ogden (thank you Head Start).  We tried it out last month with some cousins, it was pretty cool.  Carter is still enjoying his horse therapy every week.  He has just a few more weeks of Kindergarten, then it's summertime.  Oy.  I'm planning on doing some outpatient PT to keep working on his skills during the summer.  The last few movies we've seen were Batman vs. Superman and Captain America Civil War.  I have some great books on my nightstand (when I have the time to read).

Carter's been having some crying spells at school and home, and we haven't quite figured out why.  He's also been waking up some at night crying and waking up Sierra. We have been trying some Clonidine in the mornings and feeding him a little more often to figure it out.  We saw Dr. Murphy today and Carter is probably really hungry- he was only in the 20s for weight and in the 60s for height.  We are increasing his food to help him gain weight, and perhaps that will help with his crying spells.  She also suggested when we get a new wheelchair this summer (he's had his for 4 years), that we could try one with big wheels to see if Carter could help propel himself.  Cool idea.  The social worker came in to give us some ideas on summer activities, although it's pretty hard with just me and the three kids going out.  Carter failed a hearing test at school, and USDB didn't have any success at getting results from hearing tests, so we took him to audiology and he still failed the tests and sound booth.  So tomorrow he's having a sedated ABR; it's been 4 years so I hope we haven't missed anything.  It's really the only way to get full and accurate results.

I don't know if it's summer approaching that has me nervous or what, but I've been really struggling lately with the kids.  Between all the doctor/therapy appointments, worrying about Keaton and Carter, and trying to keep the house clean and going and the kids happy and fed...I've been exhausted.  Not just physically, but mentally and emotionally.  I feel drained, depleted.  Even just going to the store by myself, the logistics of it are tricky.  Carter has to be lifted and Keaton still clings to me.  I have felt like not many can understand my particular situation, and it's isolating.  Being farther from family has hit me too, and I feel like my support system is quite small.  I have been angry and frustrated, which hasn't made me feel any better.  But I decided it's ok to let myself feel like this, because I can't always be happy or content.  Motherhood is hard, and I do have some unique situations on my hands.  I am overwhelmed and quite busy.  It's easy to see my failings and berate myself every night.  But I guess the point is, I keep going.  I keep trying.  And I sure love these kiddos of mine, even though I'm pretty sure I will go crazy any moment now.  I don't rely on my Heavenly Father much, because I tell myself I'm strong enough and I've got this.  Plus sometimes my bitterness blames Him for my circumstances.  But when you see the fabric around you crumbling, it's time to start asking for help.  And to humble yourself.  Stay tuned, if you dare, for my progress.


What's coming up:  Carter's sedated hearing test (tomorrow), weekend trip to St. George, Carter's outpatient PT appointment, Sierra's outpatient speech consultation, SUMMER, Chris's 30th birthday and Father's Day.......