Happily Ever After
Two parents and three kids -- navigating Fragile X Syndrome and Autism
Tuesday, February 1, 2011
Two Eagles
I thought about how I don't always focus on the beautiful part of life -- I just see the ducks about to be eaten. Often it is hard for me to look past the difficult parts.
For instance, today, Josh pooped in his pull-up while I was looking at shoes at Kohl's. This wouldn't normally be a big deal, but through some user error, I took the wipes out of my car and did not put them back. That oversight on my part led to a quick trip to Target that began with me picking Josh up off from the floor and putting him into a shopping cart. I think he weighs about 70 pounds now. I pick him up by grabbing the collar on his shirt and coat and then scooping him up behind his knees. I have to haul him up like this because when he doesn't want to do something, he lays on the ground like a dead fish.
After getting him in the cart, I tried to ascertain the quickest way from the front of the store to the baby section and the wipes. I'll admit -- I felt sorry for myself and a little embarrassed by the prospect of taking my 10 1/2 year old to the baby aisle to buy wipes. I normally just buy a case of them at Costco so it feels less sad. The other ladies on the aisle had a infant car seat attached to their carts with a cute small baby in them. I had a giant 2 1/2 year old in my cart who was trying to scratch all of the skin off from the tops of my hands. When I moved my hands to stop him from scratching, his next tactic was to try and pull things off from the shelves. Shopping is sometimes hazardous.
After purchasing some wipes and a couple of other things that I needed, I took Josh into the bathroom and changed him in a handicapped stall. He laid down on the floor. Gross, huh? It was the best idea I could come up with. He seemed happy to be clean again, and happily left the store.
So back to the eagle. Josh is who he is. He is naturally a little messed up in his head because of a lack of FMRP1 protein (I think that's what it is he's missing). I need to remember to see the majesty in him -- and not just the hand scratching and dead fish imitation. I think that would help me to be a happier me.
Saturday, January 8, 2011
Horses
Thursday, December 16, 2010
Sunday, August 1, 2010
Jacob’s Summer Camps
This Summer, Jacob attended two Summer camps. The first one was at the beginning of July. He attended Explore! Summer Band Camp. He has been playing the clarinet for a year at school and this Summer he started playing the saxophone.
You can’t actually see him playing – he’s on the far right – second saxophone in. You can see him at the end of the performance running off from the stage – we had to hurry home to get Anni and Josh off from the bus.
I am so proud of him – learning to play two instruments and working so hard at it. No one else in our family is musical, so we think he’s amazing.
This last week, he attended a lacrosse camp. He had fun trying lacrosse in PE this past year and wanted to try it out. It was fun but exhausting and he used a lot of little used muscles.
Josh’s Birthday
Josh turned ten this year! I can’t believe it!
He loves everything about birthdays – the presents, the balloons, the singing, blowing out the candles – he loves it all. The best part is that it was his day today.
My brother Kirk’s family came to visit us and got here just in time for Josh’s birthday party. We’ve never had family here for one of the kid’s birthdays – so this was special.
Josh loves all things Toy Story – so his birthday was extra fun because of all the Toy Story III toys in the store. I think his favorite gift, hands down, was his Toy Story comforter for his bed.
Things I love about Josh:
- He has an amazing enthusiasm for life – simple things make him happy
- He loves Ashton so much and is thrilled beyond belief to have him home
- He has a quick smile and giggle for any attention that you pay him
- He says the cutest prayers – prays for the chips and salsa
Monday, July 26, 2010
Happy Birthday, Annikah! January 2010
Wonderful things about Annikah:
* She loves to help -- make dinner, go shopping, clean the kitchen, whatever it is, she loves to help
* She is very compassionate and worried about others' well being
* She loves babies and small children and follows them around to make sure that they're safe
Sunday, January 17, 2010
Week of January 11, 2010
I took both kids separately for 2 visits each so that they could take IQ tests and a test to see if they are Autistic. The testing was a little tough for our son 9 because he doesn't really work well with people he doesn't know. The Autism test that they gave him took him about 5 minutes to complete because he wouldn't answer any of their questions.
Anyway, when Ashton and I went to get the results, it was interesting that they found that our son, age 9, has the IQ of a two year 7 month old and our daughter 7 has the IQ of a 5 year old. That's what I've been telling people, so I guess we were better on target with that number than I thought.
The specialists gave us some advice on therapy that would help 7 and 9 to succeed. We are going to do a social skills group for our daughter to help her learn to interact with people better. The drs said that she has high functioning Autism. They said that 9 could use some behavior therapy to help him overcome some of the anger issues he faces when asked to work or transition.
I pray that I am up to the challenge. Therapy takes a lot out of me as I do a lot of it at home -- they teach us how to do the therapy and then we implement at home.
Interestingly, this week in seminary, I taught about the premortal existence and how all of us who are here on the earth are valiant and chose Heavenly Father's plan to come and be tested. 7 and 9 are being tested in other ways than the rest of us -- they don't really see good or evil, just people, and they are innocent. Their trials will be more overcoming what is happening within themselves than what is happening around them. Our trial as parents is seeing how others treat them and seeing how different they are and not being sad that they can't do what other kids their age do. They are teaching me to accept everyone for who they are and what they can do and joy in it.