Category Archives: Updates

Bed Tent = Better Sleeping

Bed Tent

Zip loves it but it’s made of plastic poles, nylon and elastic straps!

Zip loves tents. He climbs inside them and creates nests of toys and blankets. He drags them upstairs and downstairs. He tries to pull one inside another.  Our tents take a beating! So, while I’d been intrigued by bed tents, I was wary due to their extremely poor online reviews. But, when I saw one in a store last week, I bought it anyway.

And it is a flimsy piece of junk made of plastic poles that bend when Zip leans on them. My husband has already jimmy-rigged a fix for a severely damaged pole.

But Zip loves it. And he’s sleeping through the night! And he’s sleeping longer in the morning! For a child with serious sleep issues, it’s been a miracle.

If anyone knows of a sturdier bed tent, we would love to hear about it. We considered the Ikea version, but it is designed to fit a loft bedframe. We’re not thrilled with that for Zip. Also, that tent covers only part of the bed. I ignored the sign at Ikea and put Zip in their display model once, and he seemed to like it, so it is definitely an option if repairs to the current bed tent become too much.

Maybe I should start a Kickstarter project 🙂 or consider sewing a roof and curtains for a canopy frame? We cannot be the only family who needs a better bed tent.

Happy Mother’s Day

Motherhood, like many very good things, is intense. Wonderful, sweet, challenging, and scary all at once. I remember when we brought Zip home from the hospital, frantically figuring out how to take care of this tiny, squalling baby. After so many years of trying, he was such a miracle to us.

Nothing was easy at first and, despite my addiction to parenting books, I had no practical baby care experience. We settled into a hectic routine completely determined by Zip’s inability to sleep more than 45 minutes. By age 2, he could sleep 2 hours. He ate well and grew very fast. I was enthralled by my adorable baby.

I loved counting his age in weeks and months, dressing him in sweet little clothes, reading baby equipment reviews, watching him look at things, and carrying him in a baby sling.

I looked forward to exploring the world with him – from tiny insects to great big cities. We would have so many adventures and I couldn’t wait to see him be curious and figure things out. I vowed that he would be free to learn in his own way, that I would protect his sense of wonder and love of learning.

But then, my questions began. I loved buying him stimulating and unique baby toys but he was not so interested in them. One fateful day, I sat at this computer to try and understand this, not at all sure what to call it. “He’s supposed to be pointing at things already?” I didn’t know that and I had no idea that was a red flag for autism. I knew nothing about autism.

I found a pediatric development checklist for doctors online. With a sinking heart, I realized that Zip would fail this assessment. At our next checkup, our doctor began asking me those same questions, and I knew our lives would, once again and in a different way, never be the same.

We’ve had many more adventures since then, both good and bad, and not the ones I imagined those few years ago as a brand-new mom. Zip is a sweet and loving child, but prefers to do the same things over and over again. He is overwhelmed in most new situations.

Like most autism families, we’ve been around the proverbial block, trying to understand ASD and our son. Now that we have been using RDI with Zip, we feel like we’ve graduated to the next level of our autism education. However Zip’s brain development was disrupted, we have the tools to bring him out of his protective self-constructed box. He can learn that there is a bright new world to explore out there and that he can learn to process it at his own pace.

Lately, we’ve been lucky to be a featured case study with Dr. Gutstein, helping us to improve our RDI guiding efforts with Zip, seeing him in a new light. From the start of watching our interactions, Dr. Gutstein focused on drawing out Zip’s curiosity and initiative. We’re working on increasing his ability to study and observe our actions, to grow by learning from watching others.

I had forgotten my earlier convictions of raising a curious, wondering child. An autism diagnosis will steal so much, including your hopes and dreams for your child. I feel energized in the way you can be when you’re looking up and ahead, anticipating what is coming next.

So, Happy Mother’s Day to all the moms out there, but especially to my fellow moms in the trenches. I sometimes feel a little isolated since we’ve fallen down the rabbit hole of autism, but I know I am not alone and we are making our way on our pathway. Appreciate the little and big joys along the way, and know that you will never be the same person that you were before. But you will be a better person, because you are that child’s mother.

Eating with Engagement

One of our current RDI objectives is to work on more engagement with Zip. Now that we’re back home after losing power for four days again because of the heavy wet snowstorm, we’re trying to get back to our brand of normality. The house is mostly clean, the laundry is mostly done and I planned our homeschool assignments for the week.

I’ve really been neglecting our formal RDI objectives and now we’re getting back on track. Our More Engagement objective is to engage very deliberately with Zip 6-10 times per day. I have to structure the situation so that Zip cannot just get up and walk away. I do this mostly by setting up a seating arrangement at a table or on the floor with cushions or a bean bag and a convenient wall. Continue reading

Hurricane Sandy Update

Hurricane SandyAs a born-and-bred New Jerseyan, I never worried much about hurricanes. I’ve always lived firmly in the lovely middle of the Garden State, not near a coast or waterway. Then along came Hurricane Irene last year and Hurricane Sandy this year. Wow! Twice now we have been walloped and left without power for several days. We lost power late Monday night and got it back almost exactly four long days later. Internet, phone and cable were there when the power came back on. Thankfully, we lost just a fence post and had no other damage, except for a whole refrigerator of spoiled food. Our generator refused to work, unfortunately.

We live about 25 minutes from the beach, and several places we know and love, including our listening therapy center, have been washed away or severely damaged. I feel so incredibly sad for those who have lost everything. We tried to keep our spirits up through the long dark nights and remember how lucky we are to be in our home and have food and water.

The biggest difficulty we had was feeding our dog, Moo. As you may know, he’s not been well. Basically he has no appetite, and has trouble keeping food down when he does eat. He’s lost alot of weight these past few weeks. Now that he’s on some medications, he is doing a little better, but everyday is a struggle to find something he will eat. So, as we ran out of cooked meat, we ran out of things he would eat. On the third day of no power, I ventured out and found a KFC open and got him some grilled chicken, which he ate reluctantly but did eat. We also enjoyed our first hot meal in days. We felt so much better! Continue reading

“Can I Have It?”

As you may know, at this point, Zip must be in control of his surroundings. He works very hard to maintain that control. We’re working on it and it has gotten better through RDI. But…  he has a bad habit of grabbing things out of my hand when he wants them. So I’ve been telling him that he must ask instead of just taking something. Now you might remember that Zip does not speak in sentences. So, what sentence has he mastered recently?

He had 20+ balls gathered behind him on the rug today. I had one ball in my hand. He asked me, “Can I have it?”

“No,” I said. “I’m playing with it.”

“Can I have it? Can I have it?” Zip keep trying the magic words that had always worked until now.

“When I’m done playing with it, you can have it” I said, deflecting his grabbing hands.

Zip thought about this for a few moments and then shouted something new – “Mine!”

This from a kid who doesn’t understand pronouns! I gave in, of course.

Quick Update

So sorry that I have not been posting as regularly as I would like. Life has quite gotten in the way. My mother and my dog have both not been well. My mother’s medications were changed and added to and she is doing much better. I cannot say the same for my dear, dear Moo. We are on our third round of medication for what seems to be a gastrointestinal problem but I am not seeing any improvement. We are devastated to watch our sweet and wonderful dog do so poorly. I feel quite helpless and I’ve been trying to be my normal optimistic self, but it is growing increasingly difficult. If he is not better on this new medicine tomorrow, we’ll be off the to the veterinarian again. I hope she will have another option that is feasible for a twelve year old dog, but I am not sure they will.

In other news, Zip is doing very well. He’s been responding somewhat to my attempts at conversation and trying and succeeding at doing some things independently. I’ve not been doing much “formal” RDI with him, but engaging and guide-thinking have become a large part of our lifestyle.

Our Week in RDI — Late September 2012 Edition

We’ve been focusing on engagement with Zip. As the Guide, we are not instructing or showing exactly how to do something. RDI explains the Guide state of mind as “a combination of feeling fully mentally engaged, yet also relaxed and open to making new discoveries and not having to perform in a specific manner.” An Engagement should always have some element of uncertainty or challenge. Even the Guide does not know exactly how the engagement will play out.

Basically we’re trying to engage with him several times a day in an authentic way. He’s been making it difficult as he tries so hard to control every interaction. He wants to be with us, demands attention from us, but on his terms. We are trying to turn everyday interactions into opportunities for turn-taking. We can take turns singing songs, doing fingerplays, eating together, brushing our teeth together, etc.

This week, Zip was rather resistant to turn-taking. He can be very possessive with objects so that is where I had the most trouble.  We took turns putting plastic magnetic letters into a clean mayonnaise jar. He was really not impressed with this idea until I showed him how it dumps out. He loves anything that is like confetti. Zip rushed through the turn-taking part and I had to be careful that he didn’t just take the letter out of my hand on my turn. Clearly, an area that we’ll continue to focus on.

We continued to work on everyday activities like loading laundry. Zip is great with assembly-line but doesn’t seem to notice when I switch to turn-taking. I think I need to slow down and pause to highlight more.

I’m due for an in-person appointment with our consultant. She’s great and we get alot done. I’m sure she’ll have some ideas on working on this objective.

Zip’s Wearing Jeans

Mysteriously, Zip’s clothing sensitivity seems to have decreased. Last year it got so bad, I had to go out and buy all new shirts without anything on them. And he would only wear soft sweatpants. A few days ago, while I sorted through his winter clothes, he agreed to try on several pairs of pants. That was very unusual. I bought him some jeans, just-in-case-he-might-wear-them-someday. Today, he put them on with no protest. He’s still wearing them right now. Yeah!

No Broken Food

Actual conversation in our house:

Zip: Mommy! Big poundcake!

Me, gesturing to plate of poundcake leftovers: Sorry, this is all that’s left.

Zip, pulling out saltines: Hello crackers!


Zip will not eat broken food – no half squares of graham crackers, no crushed saltines, and no crumbly bits of leftover poundcake. He will, however, eat food off the floor. Go figure.

Playing More, Watching Less

markerI decided to take a step back and work on some self-care and hygiene issues with Zip. To motivate him, we decided, after much thought, to withhold videos and computer time, to keep them as a reward for learning certain essential skills. It’s been a little tough, but Zip understands the idea. I reinforce it by letting him have a video after trying very hard at these skills.
It’s been almost a week. Continue reading