Welcome to Holland

When we received the Autism Diagnosis from Dr. Blitz back in January, we were given a packet of information. I didn't actually look at the packet thoroughly for probably four months, I was in the thick of therapies and when I had first glanced through it noticed there wasn't a comprehensive list of "to-do's" like I'd hoped for. There was a list of books to read, websites and excepts from those websites to check out but not a list- which is something it seems a lot of us are looking for. A good list that says "If your child has/does this is might be this", "here are gluten free foods ASD kids will actually eat" - definite answers are what I, and probably many other parents want. But since that was not in this packet, I figured I was no better off than if I didn't even have the packet since I was trying to figure everything out seemingly from scratch anyway.

So I ignored the packet for a while and when Taylor's folder in the file cabinet finally broke because there was so much stuff in there (medical bills, reports, other "helpful" printouts of info we'd gotten, did I decide to sort and organize and look through the packet. I found this poem in there, called "Welcome to Holland". I do like the poem, sort of. I mean it helps to make the point that Autism just sort of happens- it is not something we expect or plan for. So it brings comfort in that sense. When I went to Google the poem this morning to post in on here, I found another blog post from someone saying that she did not like "Welcome To Holland", and I guess I see her point too. This mom of another ASD kid thought this poem put parents of special needs kids on a pedestal, and gave the impression that having these kids is a blessing and we should forever be grateful and didn't have the right to feel frustrated or complain. I guess I understand that too. It's almost like when someone dies and everyone comments that they are at peace or they are with God now and that should give comfort to the family. It still hurts and that family still has a right to feel sad for themselves.

Don't get me wrong, having a child with Autism, and more so Taylor having Autism is not at all like him dying. He is such a wonderful and amazing little boy- but it is still HARD. Some days it is really, really hard. And of course some days everything is great and anyone who didn't know would never be able to tell something was "different" about him. But some days he is falling all over the place, won't eat his food because there is a speck of overcooked brown on it, he'll melt down over every little thing, won't be able to take his own clothes off and pees himself, runs into everything and everybody and then melts down again when we tell him to be careful or take away the plastic he is chewing or try to stop him from banging his head. I could go on and on. These are usually the days when I have a ton of phone calls to make, or Brooks needs me to do something and then email it to him or we are supposed to get out the door to an appointment or meeting. So I get "Welcome to Holland" and I get the lady who can't stand it. I don't want pity or high expectations. I love Taylor and wouldn't trade being his mom for anything.

But, I would also love to go to Italy.

We're back...

OK, so FOR REAL this time blogging is on like Donkey Kong! I feel like I have been saying forever that I needed to get back into this. Apparently I need a lot of signs sometimes before I "get" it. I love blogging and have been blogging about bridal stuff for the ABA, but have avoided this site mainly because with everything that has been going on I felt like I was constantly in it and didn't want to then talk about it again, but now I get how cathartic it is to deal with it all. I have been mentally overloaded and have had some pretty serious epiphanies lately. Like light bulbs going off constantly. I don't know how many times lately I have said to myself, "Oh now I get it!" "Oh that makes sense!" I also keep thinking about the phrase that God gives you only what you can handle, which is perhaps the understatement of the year. Thank God he didn't dump all this past year on me at once- I seriously would be in the looney bin.

So, looks like the last post was in March, way too much to go over all in one blog but I am sure it will all come up at some time, in due time. But, we are back and man have we been busy! Big plans, lots of new things have been learned and we keep on chugging.

Cupcakes for Breakfast? Sure, why not?

Happy Birthday Jasmine!!

Today is the 2nd birthday for the most wonderful little girl a mommy could ask for. Her party is scheduled for this Saturday at Tumbleweed Park. We were going to have a tea party at the house, but I just couldn't get creative enough for it. So, we changed plans and she is going to have a tumbling party instead. They set up mats and tunnels and other activities for the kids. We also ordered her Barbie cupcakes, since she loves her cupcakes. Today I bought some butterfly cupcakes and she decided that is what she wanted for breakfast. Of course I had to say yes, it is her birthday after all!



Taylor had one too. Let's hope he was behaved at school!

Sensory Shopping

Today the postman brought an exciting package from Barnes and Noble: The Out of Sync Child, and The Out Of Sync Child Has Fun. Ironically, just this morning I also went online and bought Taylor's "wiggle seat" as his OT calls it. It is an inflatable disc seat with bumps on it, that seems to work to keep his little keester still. Depending on how big this thing is, I may fit it in my purse for the next time we go out to eat. Taylor seems to love deep pressure and "proprioceptive" activities, so I am attempting to find what we can do at home without breaking the bank. Taylor's favorite activity with his OT is the "Squeeze Machine", which is a measly $530. After quickly flipping though The Out of Sync Child Has Fun, I think we can make a similar type of activity out of inner tubes.

Day Trip to Tucson

Last Saturday we went to Tucson for the day, and had a blast! We started out at the U of A, and did pictures with an old friend from high school on the U of A campus. It was a ton of fun and we got some amazing shots! I love pictures of the kids, and these turned out wonderful.

After pictures, Taylor asked for lunch at McDonalds and then went to the Zoo. Taylor was very excited that we had a map and he chose which animals he wanted to see. After the Zoo, we met our friends Chris and Rachael and their two kids at Little Anthony's Diner. They kids were all wild, but had a great time. It was great to see them, but what was especially nice was that the kids are all the same age and it was tons of fun since they are totally where we are in life. Since this day went so well, I can't wait to do it again!

Six Kids and Crazy

Happy Belated Valentines Day!

And, speaking of love...Valentine's Day was also the special birthday of our newest niece Maria Andrea Back. She decided to give her mommy and daddy a little bit of trouble and their planned home birth turned into an emergency c-section and NICU stay. Mary and Araceli are both doing well and should be home today.

We picked up the kids when they were still at home, and then kept them for a little bit longer then our initial idea of a few hours. I often say God did not make me to have a lot of babies, and after this weekend I can't argue with myself. Don't get me wrong, there are many wonderful parents out there who can do it and do it well (such as Araceli and James). I am just not one of them! You just have to have a lot of structure and routine, and patience. The kids all did well, but long term I think 2 is just enough for us.

Bella, Michael, Sarah and Josh are now home with their Daddy. And we are happily snuggling and loving our two.

Germs and More!

Update to my TGIF Post:
Our Friday filled with fun was on a roll: speech started late which meant our hour drive/lunch break was shortened to 30 minutes, and then because of that I was 10 minutes late to Taylor PT eval which was dutifully noted in the printed eval I was mailed about a week later. Among his hypotonia and low muscle tone diagnosis mention was a reference by the therapist that she could not complete the full test because we ran out of time. Gee, thanks. The story of my life, it seems.

So anyway, after rushing back to Araceli's from PT to pick up Jasmine who Araceli had very kindly sat with during her developmental therapy session since mommy couldn't be there, we headed to an unexpected stop at the pediatricians. And the day came screeching to a halt with the diagnosis no mother who has taken her kids all over town and so unknowingly shared germs galore wants to hear: RSV. Since Taylor does not do oral meds, he was give an antibiotic shot for his ear infection I also was made aware of, and a breathing treatment at the office as well as nebulizer to take home for more breathing treatments. So, I called Jenny and sadly explained we would not be at the birthday party, then called my very pregnant sister to let her know I just brought some mega cooties into her home.

Over the course of the weekend, Taylor got much worse and breathing treatments were upped to once every three hours, even during the night. Something like RSV really must be shared, so by the next day little Jasmine was showing signs of this virus o'joy as well. On Monday, we were back at the Pediatrician's office and this time Taylor received a steroid shot for his poor little lings and airway. He also needed to go get a chest x-ray. Following this day of fun, my little guy decided he wanted McDonald's and he wanted ice cream at Ikea, so of course we obliged him.

The week only got better, with Jasmine getting even sicker, another trip to the pediatrician for her which was positive for both RSV and Pneumonia. We ended up at the ER that weekend when her temp spiked at nearly 105 degrees. By Monday, fortunately she was much better, but on Tuesday we received a call from the ER Charge Nurse saying her x-ray had an "infiltrate" and she needed to be switched to a 10-day antibiotic treatment.

So, anyway, after all that I hope and hope and hope some more that we are done with germs for the rest of the winter!