Wheelchairs

I guess I knew this day would get here… the day when we needed to get a wheelchair for Owen. We have one that we use right now that a good friend let us borrow. Owen has to have it to ride on the bus. In my mind he was going to be walking by now or using his walker all the time. I’m not saying that I’m disappointed. I’m very very proud of Owen and how far he has come.

My first thoughts on a wheelchair were that we just needed one for the bus and that I would like something that’s collapsible and light-weight.

Then we had a meeting with the sales rep and PT from school. The more we talked about it I realized we really needed to get something that Owen could operate himself. We want him to be as independent as possible. Why give him something that prohibits that? So, during that meeting we completely switched gears and changed what we were looking for.

There were a few different options for pediatric wheelchairs that would meet our requirements. One option was lower to the ground, Quickie Kidz. The other was bigger, Zippie, but would give Owen more room to grow. It felt like we were being steered more toward the chair that was bigger. But the one lower to the ground would allow Owen to possibly get in and out of the chair from his walker. There’s no chance of that in the big one.

The sales rep brought demos of each to the school for us to look at. We put Owen in the Quickie Kidz and it seemed to fit him great. He even put his hands on the wheels and moved himself a little.

So, after talking with my husband I think we are going to order the Quickie Kidz wheelchair for Owen.

Medic Alert

I finally got motivated and bought Owen a Medic Alert ID. I had been putting it off FOREVER. I also wasn’t quite sure what type to buy. I thought a bracelet would be too distracting to Owen and he wouldn’t leave it alone or keep it on. I thought about something for his shoe or backpack, but I would feel more comfortable with something that is on his person.

I saw on Pinterest that a friend had posted a link to a site with Medic Alert IDs specifically for children and more fashionable ones for adults. So, I checked it out. The site was Lauren’s Hope.

I found a mini dog tag that I thought just might be what we need. So, I got motivated and actually ordered it. I just put Owen’s name, Hydrocephalus, Programmable Shunt and my phone number on it.

When we got it I saw it was the perfect size for Owen. Then it was time for the real test. Would he wear it. The answer…. Yes! He was annoyed at first but then got used to it. He played with it a little and would look at it throughout the day, but left it on. Phew…

ABA evaluation

Several months ago we started investigating the possibility of Owen being somewhere on the autism spectrum. We went to see his neurologist and he agreed, but referred us to another organization for an official diagnosis. I will admit, the paperwork for the eval sat on my desk for weeks before I even started to fill out the 15 pages of enrollment/interview paperwork.

Then about a month ago I get a call from Owen’s teacher asking if I had ever considered the possibility of ABA therapy for Owen. Its something I had been thinking about for a while. From what I know about ABA therapy, I think Owen would really benefit from it.

For those who don’t know what ABA therapy is, here’s a technical description. ABA stands for Applied Behavioral Analysis. Typically developing children learn without our intervention–the world around them provides the right conditions to learn language, play, and social skills. Children with autism learn much, much less easily from the environment. They  have the potential to learn learn, but it takes a very structured environment, one where conditions are optimized for acquiring the same skills that typical children learn “naturally.” ABA is all about how to set up the environment to enable our kids to learn.

Owen is getting his evaluation this week. I will be very interested to see what the results of the evaluation, if he qualifies, and what that means on a daily basis to him. From what I understand he would still get class time with his peers, but some of his learning time would be either one on one or in a smaller more structured group.

I will keep you posted with what happens.

 

Another scare

Yesterday we had a scare. I got a call from Owen’s teacher saying he had been crying and screaming all day. She said he was “inconsolable”. Owen is never inconsolable. He is such a happy kid. He had no fever and hadn’t thrown up, but it was still completely out of character for Owen. We also heard from the school nurse.

So, I had Brett go pick him up from school since I was at work. I told him to call me as soon as he saw Owen so I could see if I needed to call the neurosurgeon. The wait seemed to take forever. I tried to keep working to distract myself, but I couldn’t. My hands were shaking. We’ve made it 4 years w/o a shunt malfunction, revision or infection.

When I finally got the call from Brett he said something was definitely wrong. So I called the neurosurgeon. They said to bring him in. I got up and left work immediately. It was the first day in a new pair of boots with a taller heel than I’m used to. I’m lucky I didn’t break an ankle running to the van. Brett and I met at the hospital.

Of course our usual neuro wasn’t there. We saw an attending doctor. She asked the usual questions. He hadn’t thrown up and didn’t have a fever. But she trusted us that something was definitely wrong. She sent us down for a head CT and a shunt series of x-rays. Owen did really well with the CT, not so much with the x-ray.

After the scans we went back upstairs to the neuro’s office. She said the scans looked good and pulled them up for us. Then she checked his shunt setting. It was at a 2.0, normally a 1.5. So, they set it back to 1.5.

The doc said it could have been the setting. It could be the start of something not yet showing up on the CT. I’ve heard other moms talk about things passing through the shunts and temporarily clogging them. Or… It could have been nothing to do with the shunt at all.

We came home and Owen took a good nap and has been acting ok every since. So, who knows what it was? We’re just happy he didn’t need emergency surgery. So scary. Its like I’m always waiting for his shunt to fail.

I will say this. I commend Owen’s teacher and nurse. They could have just blown it off as Owen acting up. But they didn’t. They called and let me know so I could make a decision. Makes me feel even better about the quality of the teachers and staff at his school.

Cuddle time…

Owen has never really been one to cuddle or be affectionate. He has always been more of a “loner”. Not in a bad way, but I have always wished he was interested in things like hugging and snuggling.

Well, ever since his little sister has come along he has been more affectionate. I love it. He still isn’t a hugger (which kills me because I am a big time hugger). I have noticed some changes though.

The other day I sat in his bedroom floor behind him while he was watching tv and he scooted back and laid back against me. Still makes me smile. Or at dinner the other night he leaned his head against my shoulder.

Its not a lot, but I’ll take what I can get. One day I hope to get some hugs. This will work for now though.

Communication has taken off!

 

I am in awe of how quickly Owen’s communications skills are increasing. He has had a huge vocabulary for a long time, but never “functionally” used that vocabulary. But in the last couple of months he is really learning his words have meaning and can get him things.

I have to attribute it to his little sister. With her taking up more of our time he has had to start speaking up.

A few shining examples:

He has an Elmo game he loves on the iPad. Part of it requires him to trace letters with his finger. He always needs help with that part. Last week I got him to start saying “Mommy” when he needs help.
Last week he scooted out of his room to let us know he needed to pee on the potty.
At night when I go in to check on him in bed, a few times he has stopped me by saying “storybook”. Of course I had to stop and read him a story. How can I deny that?

I am just so excited about all of his talking. It will be so great to know what the heck is going on in his little head one of these days.

Mr. Chatterbox isn’t just “chattering” anymore

I would say Owen is finally starting to “get it”. He now understands that his words have meaning. For a long time Owen has been able to label all kinds of things (from apples to xylophones). The problem was he wouldn’t express his wants or needs.

His language has really taken off in the last month or so. Its amazing. He is appropriately saying things like “all done”, “new game”, etc. The other day in his room he looked at me and said “you watch”. I said, watch, watch what? He said, “you watch pocoyo” (one of his cartoons).  It was so exciting.

I got an email from his teacher at school today saying she can’t believe Owen’s spontaneous talking. She said he is actively participating in circle time, beyond just singing the songs. She said he is even saying Thank You when given things.

We couldn’t be happier. Just the idea of being able to communicate with Owen is so exciting. I don’t care if we need some sort of aug comm device, sign language or actual speech.

People with typical kids just have no idea how hard that part of it is. Not ever knowing what your kid is thinking, wanting, feeling…

Timeouts

Well, a couple of months ago we started trying to implement timeouts for Owen. He has gotten into a bad habit of hair pulling, biting, grabbing people’s glasses, etc. when we are transitioning between activities.

At first we really struggled with how to implement these.  We couldn’t really sit him in a chair and expect him to sit there with out hurting himself. He wouldn’t hesitate to throw himself in the floor face first. We also wondered if he would even be affected by a timeout. He is such a content little guy.

After lots of polling of other parents and research we decided to use his old high chair that had a 5 point harness on it. This way we could strap him in safely. We also decided to put that chair in the kitchen for a couple of reasons. One, its centrally located in the house. This way we could listen and make sure he was fine. Also, easy access to the timer on the microwave. He can see the timer from his chair.

At first he seemed rather immune to this whole process. He could have cared less. And there was no way we were going to get him to apologize. He just ignored us. I would say for the most part he ends us in timeout 3 or 4 times a week, sometimes more.

In the past week I have noticed a change. I went to put him in timeout earlier in the week and he started saying, “I sowwy” before he was even strapped in. I told him thank  you for saying he was sorry but he still had to sit in timeout for biting mommy. He was NOT happy to be sitting in timeout. After his 4 minutes I came back and told him why he was in timeout and asked him to say he was sorry. He did it!

Now, this hasn’t stopped him from throwing tantrums. But I do hope he is starting to learn there are consequences for hurting other people. We’ll see…

Letting go…

I have been on maternity leave for almost 7 weeks now. Once I got back on my feet, I got into the “Stay at Home Mom” swing. Most of the day is spent taking care of kids, cleaning, doing laundry, paying bills, calling doctors, etc. I’ve probably been more busy than when I was working 40+ hours a week.

During these last several weeks my house has looked great. My mail has been mailed on time. My “to do” lists are getting completed. I have been able to put some organization in place. It has been amazing.

I have recently realized though, that it takes a full time person to get all of that done. In one week I won’t be able to do that anymore. So, why do I expect myself to be able to do all of this and work full time? Its not possible! I have to learn to let it go. Some things are just going to have to go undone so I can spend some extra time with the kids.

In a couple of months when I am all stressed out again about my house being messy or the dishes in the sink I will read this post. I hope it will remind me that I am only one person and can only do so much…. and that is ok.

What does $3000 buy?

What does three thousand dollars buy? Well, it depends on who you are. If you are the average Joe… quite a bit. If you are someone with disabilities, not much. How backwards is that?

 

 

Just for fun I thought I would do some comparisons. The new communication device they are looking at for Owen, the Springboard Lite, is roughly $3000.

 

 

 

 

 

 

 

 

For half that price you can get an all in one iMac computer with 1TB hard drive and 4GB of memory and a 27″ screen.

For the same amount of money you can by a 50″ 3D smart tv.