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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...