Touch A Truck

I took Tommy to Touch A Truck on Saturday. What an amazing event! For just $5 you can explore about twenty real trucks.

The kids can climb in them, look at all the equipment, and even get in the driver's seat and beep the horn. The firefighters, police officers, and other vehicle operators are also there to chat with you and answer questions about the trucks.

Tommy in the cab of a construction vehicle.

And beep the horns they did!  Imagine crowds of parents and children, and twenty trucks intermittently beeping and honking. Then add in some wailing sirens and you have a good idea of the auditory chaos that is Touch a Truck.

It is a lot for a sighted child to handle. For a blind child like Tommy, the unfamiliar and unpredictable sirens and honking horns are very challenging. A year ago he would not have been able to handle it. I let him know beforehand that it would be loud and crowed so he could be prepared.

It also helps that his school is in an urban area so he is more used to the sounds of traffic. His teacher believes in real life learning so he and his class have had the opportunity to travel in the community surrounding their school. I love that! It is important for Tommy and his class to participate in community events. Their participation also presents an opportunity for people in the community to learn about Tommy and his classmates. It's a win win!

Practicing until he gets that self-driving Google car.

But back to Touch a Truck! Tommy has a couple trucks that he loves so I thought this would be a good opportunity for him to explore some real trucks so he can understand more about the variety of trucks that exist. I knew it would be hard on him though.

I am happy to say that he lasted 40 minutes at Touch a Truck. He probably explored 8 vehicles. He clung to me and I had to carry him for most of the time but he didn't have a meltdown.

We will definitely go again next year. And next year I'm bringing a helper because carrying a 36 pound child in the hot sun is not easy. I noticed the more experienced parents had brought earplugs for their children. Since Tommy gets most of his information through his ears I don't think he would willingly wear earplugs. I do think it's a good idea for those who can manage it!

Another mother told me there is an event like this in Florida soon that will even feature a helicopter! See if there is a Touch a Truck event in your area.

Even though this was not Tommy's favorite event I do think he learned a lot from it.  Anything that helps the world make sense to Tommy is worth it in my opinion, and even difficult experiences can be worthwhile.

Yes, Tommy found a door to play with on one of the bomb squad trucks.

Rent a Disabled Child for Disney?

Yes. You read that right. Some people are actually hiring a child or adult with a disability to go with their family to Disney so they can take advantage of the accessibility pass offered to children with special needs. I hear it runs a $1,000 a day. Not bad for families struggling to pay for the care and therapy their children so desperately need. Has it really come to this?

Why does it bother me so much? Because it's confirming one of my fears. That people are begrudging a child with a disability the rare occasion that his or her life is actually easier than yours. Yes, you and your children, who have the privilege to never have multiple surgeries, hospital stays, procedures, tests, therapies, and medications have to wait in line at Disney. Boo hoo.

Tom is blind but he walks so maybe he would be considered a good candidate for this sort of "loan-a-child" work? But he does not drink enough water orally so he would surely dehydrate himself and require a tube feed of hydration. I'm sure that's too much work for the busy, well-to-do folks that can afford this type of modern child renting.

A child with a trach? Never. They can't be bothered to do the real job of parenting children with special needs. Yes, this type of parenting often means working hard just to keep our kids out of the hospital or even just keep them alive. These are the realities of actually parenting a child with complex health problems or disabilities. It's not always skirting lines. Our amazing children are the perks.

Now I have never been to either Disney park and it is financially not in the cards for our family so we won't be going anytime soon. Having a child with special needs can really do a number on your finances! I stopped working for three years to care for my son through his many surgeries and therapies. I know he would not be half orally fed and doing so well if I hadn't. I also know that being out of the workforce really affected my career and the financial stability of my family. It was just what needed to be done and I feel lucky that we were able to do it.

For the families with children who have disabilities, I hope you will hold your heads up high as you use your guess assistance pass. You deserve a day where your life is a little easier. All the better that you can enjoy an easy day in such a magical place.

I really hope this is just sensationalism. I hope to god this never actually happened. It was reported in The Atlantic and Fox News.

Happy Mother's Day

Mother's Day Interview
As you already know, I was interviewed on the Blind Matters Radio Show on Saturday for their Mother's Day show. You can listen to a podcast of the interview - my part starts around 33:00. I was really nervous but it was actually exciting and fun.

It's a shame that Tommy slept through the whole interview because we wanted him to say hi on the air. Maybe we can try to call in during next week's show.

My Mother's Day
We went to the park and then to my parents' house for dinner on Mother's Day. The day before we spent the day with my husband's parents. It was a weekend of delicious food and visiting. We all had a great time.

Here are some pictures from our visit to the park. It is so nice to have some pictures of Tommy and me. I am always the one taking the photos so I am never in them!!

I think you can see who is leading who here.

Usually I wouldn't need to hold his hand but there were wet leaves and puddles .

Here I'm trying not to help him. 

Ok, maybe just a little help.

All the way to the top of the climbing rock!

Still celebrating his climb. 

I'm glad they make these play structures big enough for adults. 

He loves the swings!

My happy guy.

I'll be on the Blind Matters Radio Show this Saturday!

This Saturday, May 11th at 4:30 pm DST/EST, I will be a guest on the Blind Matters Radio Show to talk about my favorite person - Tommy!

You can listen to it live by going to their page - Blind Matters Radio Show and choosing Show Livestreaming. Go like the Blind Matters Radio Show Facebook page to keep up with the latest guests.

What is the Blind Matters Radio Show?
Blind Matters Radio Show is a talk show that caters to the interests of the blind and visually impaired. "What makes this show unique is that the host, many of the guests and some of the advertisers are also visually impaired or blind." - from the Blind Matters Radio Show website.

Call into the Blind Matters Radio Show to talk to us this Saturday, May 11th.

You can call into the show every Saturday from 3:00-5:00 pm EST at 800-788-9575. Call in this Saturday to ask a question or say Hello!

Hopefully Tommy will be feeling friendly. I want him to be able to talk a bit too. His first interview at three and a half years old. Not bad!

A Visit to Tommy's School (WPSBC)

Lunch at school.

A couple weeks ago I was invited to visit Tommy's school and observe some of his lessons and therapy sessions.

When Tommy had therapy at home through Early Intervention I got to see every therapy and discuss his progress with his therapists at every visit. Now that he's in school I am not an everyday part of the team. It's all up to Tommy now! 

But that also means that I don't know the tactics they are using to teach Tommy. I don't know what I can do to support their lessons and enhance Tommy's learning at home. I used to watch every therapy session when he had therapy at home and every session ended with ideas and suggestions from his therapists on ways to help Tom reach whatever goal they were working on. His teachers know that I am unemployed right now so they suggested I come in and observe some of his lessons. 

Ok, I'll be honest. They didn't just come right out of the blue and ask if I wanted to observe some of Tommy's lessons. Tommy had little bouts of sickness for about month and it was really affecting his eating. 

When Tommy isn't feeling well he just loses all interest in food. We had been gaining so much ground lately in our "food wars" that I took it very hard. Getting Tommy to eat has been a very long and frustrating process. Any steps back are very hard to take.

So yeah, basically we were talking about Tom's health and his eating and I got all teary and let out all my pent up emotions on the subject. Oh well, it happens to the best of us! Anyway, Tommy's teacher invited me to visit to see how his feeding therapy session have been going and observe his orientation & mobility lesson.

A tiny drinking glass makes all the difference.

His feeding therapy during lunch was very positive and Tommy ate well. It really does take a lot of time to get Tommy to eat enough food. He just does not have the same hunger drive that most people have. He would happily starve to death! His speech language pathologist (SLP), Miss Lisa, is very patient with Tommy but she is firm and keeps him on task with his eating. That's what he needs.

I noticed that they use a very tiny drinking glass and only fill it half way. He does so much better with that cup than the slightly larger cups we have been using at home. Small changes like that can really make a big difference. We also struggle to get Tommy to drink enough fluids so any opportunity to increase the fluids he gets by mouth is important. We now have one of these little cups for home use.

In general, Tommy is eating a larger variety of foods by mouth but the volume of food is still small. Last night he ate two beef ravioli and that was a big deal. We are working on getting him to like more foods than his trusty mac n' cheese, or "hac n' cheeeeese" as Tom calls it.

They say a child may have to try a food more than 10 times before they will begin to accept it. In Tommy's case it may end up being closer to 45 tries or more, but who's counting? The good thing is that we are seeing progress and that is what we want.

Tom and his new cane.

What did I learn from his Orientation & Mobility (O&M) session? Tom is fast with his new cane. That picture above is the only one I could get that wasn't blurry. He is so fast!!! This is not his usual NFB cane but one they ordered for him at school. It has a thick grip and a ball at the tip. I know the ball at the tip does not provide auditory feedback like a metal tip but Tommy is not yet using the cane with that level of sophistication yet anyway. He does not tap the cane he just lets it glide. This ball lets the cane glide along and doesn't get caught like the smaller metal tip did. I think this cane is a exactly what he needs right now and I'm so pleased that his teacher ordered another cane so he can begin bringing one of these canes home for practice.

It was so nice to meet his O&M teacher, Norm. Awhile ago I asked for a update on Tommy's O&M progress and I got a thorough update letter from Norm that also invited me to observe a lesson. I'm so glad I was able to do that.

Since Tommy has one year of O&M through Early Intervention he already had a foundation in O&M skills like trailing, squaring off, and very basic cane travel. But Tommy's old O&M had to be convinced to teach Tommy to use a cane. Initially he was very hesitant to teach cane travel to someone so young. I knew this teacher didn't have much experience teaching cane training to someone so young and that he had not taught cane training to anyone in a long time.

That's how it can be sometimes. Some teachers of the visually impaired don't get to flex their Braille or cane muscles enough and their skills get rusty. There just aren't that many children learning Braille unfortunately.

But I got to see Tommy motoring along the hallway with his new cane. He grips his cane with his left hand using a "thumbs down" grip and holds the cane pointing to the right so it crosses his body and gives him frontal protection.

Just talking to Norm was very interesting. He suggested we put some wind chimes up in the yard to give Tommy some auditory location clues. How smart is that? I would have never thought of that. He also mentioned that Tommy sometimes makes clicking noises and believes he may be doing a bit of echolocation. I would love to see Tommy develop that skill!

Daniel Kish is famous for his mastery of echolocation. He is completely blind and he bikes, hikes and travels the world. Some see this clicking as anti-social and off-putting but I want Tom to have every tool in his arsenal. If echolocation ends up being one of those tools, so be it. Watch this short video to learn more about echolocation.

In Physical Therapy I saw Tommy pedal a tricycle, go up and down stairs using correct form, and practice stepping up and reaching up to place gummy stickers high above his head.

It's funny. When we had Tommy's first IEP meeting my husband and I objected to walking up the stairs as a goal for Tommy. Tommy already walks up stairs? Why does he need to work on that if he already does it? Because he doesn't walk up stairs in a way that is healthy for his body. There are so many subtle body positioning differences that Tommy does that I would never notice because I am not a physical therapist. Thank god Tommy has a really good physical therapist that employs many fun activities into his therapy routines. I feel like she is really on top of things and that is a comfort.

Tommy doesn't keep his head up like he should and that has caused his shoulders to be a little rounded. The body isn't meant to held like that and it can cause pain. These issues are not uncommon in blind children but I am glad to have professionals helping him.

One thing everyone agrees with is that Tommy loves to explore and this trait will serve him well. Everyone is working to teach Tommy skills to compensate for his lack of vision and Tommy is making progress in all areas.

IEP Time

We also got our invitation to Tommy's IEP ( Individualized Education Plan) meeting later this month. I am excited to hear more about their plans for him. We just got a progress report that details how Tommy is doing with his educational and therapy goals. I am very pleased with his progress. 

His first progress report did not show much growth. I think that he was still getting used to his school at that point. This progress report shows improvement in every area. He is close to meeting some of his goals so I am interested to see what they have in mind for him next.

His verbal skills are getting better every day. He's not just saying yes or no these days; he is communicating! He is constantly surprising me with new little phrases and an increased interest in repeating the works he hears others say. It is just adorable to hear him parrot adult phrases. I love it!

COMING SOON...

A guest post from Jessica at Out Of Sight Teaching. Jessica is a TVI (Teacher of the Visually Impaired) in New Jersey. While finishing up her masters degree in Orientation & Mobility she decided to start a blog to share information with her students and their families. 

I love hearing stories and ideas from people who work in the field of blindness education. Blogs like Out Of Sight Teaching are a great resource for parents.