Monthly Archives: September 2013

Friends!

One of my crippling fears for Mikey was that he wouldn’t develop friendships. Before our diagnosis, it was very hard for me to watch him play with kids he’d known since birth, but as they all morphed into fully-formed humans, he sort of differentiated himself and pushed them away either literally or scared them a bit by stimming–barking in their faces, screaming, making lots of outside noises, or freaking the fuck out if they wanted a stick he was playing with.

When he was in school last year, he had a lot of trouble with aggression and I got so many calls home about pushing, hitting, or biting that I just feared he’d become that weird kid.

My heart is so happy this year to watch him developing reciprocal friendships. He got invited to a birthday party last weekend and when we arrived, another girl from school was delighted to see him. I learned that this girl, L, talks about Mikey all the time.

He and L played together on the trampoline, were wrestling and rolling down the hill together. I just loved it. This morning at school drop-off he said hello to the birthday boy and the two of them zoomed around the school lot.

Another day, I got to school a bit early and saw him collaborating with another boy on a sorting work. The other boy hadn’t done that work before and Mikey gave him a lesson in the work. They had their small heads pressed together on the rug, sorting coins. Cooperating, sharing, engaging. How refreshing!

What a magical thing to step back a bit and watch my child interacting with friends he’s made all by himself, utterly independent of me. He’s been working so hard on his social skills with his early intervention teacher. I just love seeing the results of this work.

Keen Eye

I took the boys for a walk the other day. We passed by a woman tending her garden, and when she paused to talk to the kids, we all noticed that she was missing most of her teeth. Thankfully, Mikey waited until we were well past the woman before saying something. I noticed he was staring back at her, quiet and contemplative. When I asked what was wrong he said, “Her teeth were like Grammy.”

My grandmother, Grammy, has been toothless for many years. Countless relatives have offered in the past to help her pay for false teeth and she’s been encouraged to get some dentures ever since her Medicare kicked in. But, for whatever reason, she walks around with only 4 teeth in her head, sucking on pretzels and chewing her food…well who knows how she’s been chewing her food.

I’ve gone through a long series of emotional responses to my grandmother’s dental situation. There were long years of embarrassment to be seen with her, and I can remember looking at her just like Mikey–wondering what the hell was going on in there and if it’s ok to mention that something seems amiss.

For years, I felt weird even mentioning the tooth situation to other people, but I really have always wanted to just ask my grandmother why in the hell she allowed herself to walk around without teeth. As if this were the Great Depression and we didn’t have any options.

 

“Do you say that because that woman was missing some teeth?” I asked Mikey.

“Yes. Grammy and that lady have zero teeth.”

I could have said a lot of things to Mikey just then. I chose to explain that our teeth are very precious, that we must take good care of them or they will break or go bad or even fall out. I promised that neither his teeth nor my teeth would ever get like that, because our dentist can help us build pretend teeth to help chew food–but this is very expensive and not as good an option as our real teeth.

My son and I, we’re made uncomfortable by the very same details.

I’m thinking about this incident today because my grandmother just had a wee stroke and is in the hospital. My family is facing the fast-approaching reality of moving her from assisted living into a nursing home and I’m struggling with feeling sad at living so far away from her.

She doesn’t have a telephone, so I can’t call her (though I suppose I could now that she’s in the hospital). All day I’ve been working out how I’ll convince Mikey to make a card for her to help her feel better. I’m nervous about what he’ll draw on the front, which is silly because he’s 4.

Really, I’m nervous about what I will say to my grandmother. And then, of course, I’m nervous about how I’ll explain her illness to my kids, who don’t miss a thing. Especially Mikey. He knows exactly what’s going on, and I have to be very careful to respect that.

Autism Friendly Lion King Performance

This weekend I took Mikey to see The Lion King at the Benedum. The theater put together an “autism friendly” performance. It was amazing! I wish all kid-focused things could consider the same alterations, because honestly I think it must have made it better for the many neuro-typical folks there…

Some of the adaptations that made a difference for us:
–before the performance, the theater put together a social story for downloading. Mikey could see pictures of what the water fountains looked like, what the ticket scanner would look like, where the actors would walk in, etc. It also reviewed what would happen during a show (they’d flash the lights, people would clap, there would be music)
–volunteers handed out little fidgets to the kids as they walked into the theater. Give my kid a plastic koosh-ball thing and he’s guaranteed to have a great day. He also made use of it during the performance. Win!
–the theater set up some quiet rooms for kids to go in and freak out/rest/get their wiggles out. One of these rooms had lots of bean bag chairs, a little tent to climb in, and some books. The other had disco balls and strobe lights and a black light…we didn’t go in that one! Mikey loved crawling in the little tent just to be by himself and we were able to time that so we missed the Mufasa demise scene. Score!
–kids were able to bring their own snacks. Need I explain anything more about why this was awesome?
–they kept the house lights on during the performance, which was great for Mikey. The dark theater at the movies as part of what made him freak out when I took him to Monsters, U.
–they didn’t raise the sound to ear-splitting, but merely kept it at an adequate volume for audience enjoyment. Who doesn’t appreciate that?

I’m sure there were other accommodations made that we didn’t take advantage of. Oh! There were volunteers in the bathroom, so I didn’t have to take Mikey in the stall with me and someone made sure he didn’t run off.

Anyway, for me the very best part was not feeling like other parents were judging me. This might not even actually happen when we’re out in real life, but that doesn’t mean I’m not worried about it. But that afternoon, I knew everyone, EVERYONE, just sort of “got it” about any unusual things my son might be doing.

When we stepped into the hallway so he could bark for awhile, no big deal.

When he spent about 20 minutes spinning in tight circles in the quiet room, no big deal.

When he got antsy during the show and somehow wedged his foot in a crack, another parent seated in the row above us just reached down to help me dislodge him and we all went back to watching the show. No Big Deal!

Just that mental aspect of being there was really amazing.

Mikey didn’t really engage that much with the performance, and that’s ok. Now that it’s all over, he likes talking about the bird puppets and making believe he’s a ticket-taker. He also loves the shit out of his program, which contains a description of the Rubber Duck Project, due to arrive this Friday. Mikey is *obsessed* with the rubber duck. He’s even agreed to NAP on Friday so that we can go see the duck in the evening.

A final anecdote about our Lion King adventure: even though we read the social story to him a zillion times, Mikey kept insisting he didn’t want to go see the Lion King. Eventually, I got him to talk about why he was reluctant to go. He thought I planned to take him into the jungle to see an ACTUAL lion. He was very worried that I was sending him off to be eaten by a wild animal!

Switching Agencies

We’re finally at the end of the grueling process of switching agencies. What sort of agency, asks the lay reader? The agency who provides our in-home therapeutic care for Mikey, also known as Wrap-Around services. The agency we’ve been with since our diagnosis has been unable, for 10 months, to provide a TSS for us even though we have a prescription.

Our case manager has been calling every agency in the county for 10 months, starting at A and working through to Z, and finally found us an agency with TSS staff. This was in July, on Mikey’s birthday to be precise. So, two months ago, we said yes to switching agencies. We’ve been waiting two fucking months for this transfer to go through.

How can something so simple take two months? I’m not sure, but I know it involved a great deal of waiting for one person to sign a form that then sat on the next person’s desk for a VERY LONG time. Once all the forms were in place, the person in charge of intake at the new agency had a 3-week back log. So.

We’ve been in a holding pattern for 2 months, knowing we’re switching to new therapists with new methods, and yet still working with our current person. It’s been awkward and stressful and frustrating.

Yesterday was the 2-hour meeting in which we discussed every element of Mikey’s life with the new agency and set up all the forms (permission forms, that sort of thing). A week from now, we will have another hour-long meeting where I sign all the forms. This hour-long meeting will come after a meeting with our case manager, who’s going on maternity leave, where I have to sign permission forms to give her temporary replacement permission to talk to us about Mikey and talk to all Mikey’s “people.”

Are you exhausted reading about this? It’s awful.

For me, the most frustrating part is that these two long meetings have to take place on Tuesdays. Tuesday is one of my work days–the only two days each week where (for 6 hours) I don’t have the children, where I’m supposed to be teaching and otherwise preparing for college writing courses. I have to give up over 2 hours of one of my teaching days two weeks in a row because this was the only day the staff person had available. The alternative would be to wait perhaps another MONTH to get Mikey going with this new agency.

I’m almost ready to just stop services altogether because I’ve been lulled into complacency by how wonderful he’s doing at school. But, I know that our family still needs support, and so I will take a deep breath and shift my whole damn week around so that I can sign these papers for a few hours next Tuesday.

I’d be lying if I pretended I’m handling this with any sort of maturity. The many layers of complication inherent in a bureaucratic system like this leave me feeling enraged and helpless.

Thankfully, my son *is* thriving with the support we’ve been getting. If I can just deal with “the system” a bit longer and keep getting some good help, I’m hopeful he’ll graduate from wrap-around services entirely. Then, he’ll just be an intense, weird kid. Like his mom!

Back to School

Mikey is back to school. This is the third week of school, but really the first full week after taking into account holidays and a graduated start. I had no idea how wonderful it would feel to spend a series of days NOT receiving phone calls home from school!

He’s gone for 7 days so far and has had 7 thumbs up. That’s a 7/7 record. Last year by this time, I had already begun having meetings and had already established a habit of hyperventilating in the moments before opening the classroom door to retrieve him. I’ll tell you what, there’s not much worse than making eye contact with your kid’s teacher and seeing her walk over to begin what you know will be a challenging conversation about behavior.

You know how when you want to cry at work, you can’t do it in front of people and you have to rush to the bathroom/your car so you can let it all out and ugly cry in private? That’s how I felt every day Mikey had school last year and I had to listen to one or another story about aggressive/disruptive behavior.

So this year, I’ve got none of that and it’s fucking amazing.

We worked super hard this summer with PCIT (I know I owe a write up of my thoughts on the second piece of the program), so I think that’s part of the ticket to his success. Additionally, he’s no longer getting school breakfast (chocolate goldfish and Lucky Charms)–instead of sending the 3s and 4s to breakfast they now do an academic morning. What a concept! I mean, we’re fortunate enough that I can feed my children breakfast at home before school.

But Mikey’s also maturing. He goes to a Montessori school, which has multi-age classrooms and builds peer leadership into the curriculum. I see Mikey responding to that in a big way. He thrives on this idea that the younger kids in class look to him to set examples. He is really rising to this occasion.

I’m not fooling myself that the year will be perfect and utterly without incident. I’m just so excited that September has, so far, been a really smooth ride.