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?