Tag Archives: autism

“What I did this summer” or in other words, a brief summary of the month of July

As usual, summer has been very busy. Brian survived the Youth Conference pioneer trek (they did a one week recreation of the handcart pioneers that helped to settle Utah). Getting last details like their trek booklets and video slideshow kind of ate up all of my attention before and after. And Brian was swamped with getting everything ready both to prepare and clean up from trek, as well as getting work responsibilities squared away. Of course, this coincided with my amazing respite provider being sick for two weeks in a row and I barely held it together, honestly.

As a nice treat, though, my sister came and helped Patrick to bed one night so that I could drive up and visit my husband on the trail. That was a little bit of payoff, despite all of the craziness. Brian was called on to speak to the youth that night. He talked about the women’s pull, when the boys and men leave the carts and the women pull them up the steepest part of the trail in memory of the many pioneer women who crossed the plains without husband because they were divided by circumstance or death. As he talked, I saw a little bit of how it must be for him to watch me struggle right now with my current demands. How helpless he must feel watching me. I’ve been so focused on my own battle that I haven’t really seen things through his eyes that way before.

While Brian was away for youth conference, we celebrated Patrick’s “miracle day.” The 6 year anniversary of when Patrick, basically, died in my arms.. but didn’t leave us. I am still in awe of where we are now considering what happened then. I decided that I’d just scrap all responsibility that day and just focus on Patrick that day. It was swimming day at school, which means I got to go play in the pool. We left there and went out to Arby’s for lunch. (Arby’s has generously donated summer lunches to kids this year and so Patrick and I have been regulars this year.) While there, I asked Patrick what he’d like to do to celebrate and he chose the zoo. And, as we finished at the zoo, I decided to go follow a lead from the morning. The lifeguard at the school pool overheard me saying how hard it is for a transplant patient to find a pool clean enough to swim in. He gave me suggestions of a therapy pool that might be willing to sneak us in during a water aerobics class for a private swim session. In the end, that’s exactly what happened and Patrick and I enjoyed a full hour of having the shallow end all to ourselves. We came home exhausted, ate a quick dinner, and then went to bed early. A perfect way to spend the day.

Patrick’s last day of summer school was a week later and that’s why you haven’t heard much from me. I can’t quite put into words what it is to spend all day every day trying to supervise, teach, potty train, clean up after, and keep nurturing a little boy with this many needs day in and day out.

I’m trying to make the best of summer and shake the guilt of the mom who formerly had amazing mommy school themes planned for every day but now just makes it through the day. Patrick gets up at 6:34 every day. We go immediately to the bath. Patrick’s discovered laying down in the tub and so he has decided to learn to wash his own hair. This means that I can’t just put him in the tub and do things until I’m ready to get him out. He takes care of himself and gets out. Most often. Sometimes I catch him with dry hair and have to send him back to wash it.

We sometimes take lazy mornings where the only goal is making sure he makes it to the potty every time he needs to and that he eats a good breakfast. (He’s discovered cereal now with soy milk and that’s leading to better breakfasts.) Some days, we take some time for playing and learning. I let mommy school slide for a bit and it certainly isn’t organized and awesome, but Patrick started to miss his schoolwork about a week into this stretch of summer break and started to get out his writing books and practicing his letters every day, or grabbing his sight word readers and practicing with me.

Potty training is going well. Patrick has had several all underwear days, even using the bathroom away from home. But sometimes he forgets and sometimes he gets stage fright.

We accomplished Patrick's first away from home potty success when I offered to buy him this car ONLY if he used the potty in Walmart. We went back 3 times until he finally did it.

We accomplished Patrick’s first away from home potty success when I offered to buy him this car ONLY if he used the potty in Walmart. We went back 3 times until he finally did it.

He’ll get restless midday and so we take lunches at the park. We gave up on the location by our house because there were never kids his age there. We now bounce around between different parks, going most often to the one near our home with a shaded play structure. It’s nice to give him the chance to move and interact with other kids. And we’re pretty used to eating the lunches I pack now. Of course, Patrick’s gotten a bit fixated on corn dogs in vegan ranch dressing and picks that most often. But build your own pizza kits, hot dogs, pasta salad, chicken nuggets, and hummus are regular favorites.

A lot of our time is also spent practicing time outs, too. Patrick’s been angry again lately. I talked to his psychologist about it and she pointed out that he’s got a lot of new skills (language, potty, eating) and a lot of new independence now that he doesn’t need feeding tubes. And she thinks that he’s trying to figure out his boundaries again. So we worked out a behavior plan with 3 very careful worded warnings and then consequences when he’s out of control in time out.

I tried starting this behavior plan on the Pioneer Day weekend and it made for a very LONG weekend as Patrick fought back against the new rules and consequences. I don’t think we’ve got things quite right yet.

Just when we were making ground, he caught a cold. Amazingly, it only lasted a few days and went away without many problems. But we had to start all over again once he was better.

We’ve also been continuing to go to social skills group at the autism clinic and Patrick’s attention seems to be getting better the more we go. Plus, I get a pretty fun little show watching a bunch of autistic 4-7 year olds practice circle time and social skills through a two-sided mirror. I’m the old-pro parent there with a bunch of brand new, doe-eyed new parents who are terrified of the diagnosis. I just sit there knowingly, quietly watching. They see behaviors that are confusing and scary to them. I just see autism and know that with a little practice and help, that won’t be a big deal. I know there is a lot more parents can survive and learn to do than they realize, and much more potential in children, too. I also see how Patrick doesn’t act exactly like the other kids in the group and remember why I don’t often use that label to try to explain his needs. But the group helps, regardless, and provides some entertainment for me, too. Especially when the kids come play with their reflections.

With a little bit more time back, we’ve snagged some family time this July. We got our bikes in good riding condition and went to the Jordan River Parkway. I went once. Brian has been taking Patrick back. Brian and I even squeezed in a couple of dates. We went to a movie last night and realized that we aren’t ready for that much leisure time yet. It just felt wasteful to sit in a theater doing nothing and we couldn’t quite comprehend people having time to be regular movie goers. (Not that it’s wrong. Feeling like leisure activities are frivolous is a pretty common side effect of the kind of extreme trials we’ve faces this year.) We also took a morning and went out to breakfast and to the driving range. That didn’t feel quite as frivolous and it was fun to see all those skills we learned in golf lessons coming back. I’ve lost less than I expected. We went to the zoo a few times. Brian had a company party at Boondocks so we went drove go carts, played bumper boats and arcade games, and introduced Patrick to bowling. With a ramp and bumpers, he actually did pretty good at it. Especially in a total overstimulating environment and with a cold.

That’s the long and short version of most of July in a nutshell. I think I’m gonna wrap up this sort of travel log sort of blog post right now. There are some other big things that happened in the past couple of weeks, but I think they deserve a post of their own.

Oh yeah.. and last week…

Blogging has been on my to do list for a couple of days. But when I sat down to write last night, I was so full of the thoughts and worries of that 48 hour period that I forgot there were other events last week that I’d meant to write about.

We had a couple of appointment last week. We finally got back in to see Patrick’s psychologist yesterday. Can I tell you how amazing she is? When Patrick’s insurance case manager called me to tell me about a new Autism clinic that she’d seen open at the University of Utah THE SAME DAY THAT SHE CALLED I was pretty speculative. Especially since we have never been big fans of the diagnosis of autism for Patrick. Spectrum diagnoses are tricky and, while time and learning have convinced me that Patrick does have struggles that fit into the definition of autism, his presentation is so atypical that I don’t feel like the diagnosis serves him well. Well, unless you are dealing with someone who really does understand autism spectrum disorders. Which the people at this clinic really do. And for all that I don’t willingly introduce Patrick as autistic, we have found the autism clinic to be a tremendous help for us. I’ve been anxious to get him back.

When Patrick met “Dr. Joo-la” and her “piggies” (guinea pigs) there was an instant connection. I could see that he clicked with her and listened to what she said to him.As icing on the cake, she also saw that with the responsibilities of being his caregiver, I wasn’t going to have a chance to go seek other help for myself. She told me in the first meeting that if we sometimes needed to spend sessions┬átalking about and taking care of me, too, that she considered that an important part of taking care of Patrick.

This last visit, I took her up on that. First of all, she spent a lot of the session reassuring me that Patrick really HAS made great progress. I’ve said before that it doesn’t seem like he is as plagued by constant sensory seeking as he was before. She pointed that out, too. Saying he seemed more focused, more grown up. Of course, his exploding language skills are an amazing step.

She reminded me not to be overwhelmed by after-school meltdowns. Pointed out that we had the same problems last fall, too. And she helped me brainstorm ways to make coming home from school perhaps a little better.

She also reminded me not to feel guilty about not being able to do all my heart says I should be providing for Patrick. She’s been following this blog, so I know that she was aware when she told me that she knew that a lot of days, we are just still surviving the day. She encouraged me to embrace summer school as respite time for me and NOT to try to spend it doing things for him or feeling like I need to save them from problem behaviors. I really need to call and see if it’s an option for me to swim in the mornings while he’s at school. If not, at the least there is a track at the high school on the same campus and I can walk.

And then she reminded me that I need help and tried to help me work up the courage to go and tell some of the people in my support system that I’m feeling lonely and overwhelmed and could use some company, if not some help. I don’t seem to be very good at that. (Does this count?)

Anyway – we talked about some other strategies for summer, for respite, for behavior, etc. We talked about bringing him back to their social skills group. (Which I’m very pleased to have found works well this summer.) We played with the piggies and Patrick tried to trade our bird Max for one. And then we made some return appointments.

That was the happy appointment of the week. The next day, I took Patrick to his allergist and I’m afraid it didn’t go as smoothly.

I learned two important lessons. 1) Don’t schedule appointments immediately following school. Patrick needs time to unwind first. 2) Don’t go to the allergist alone.

Because of his ADHD and sensory processing disorder, Patrick doesn’t do well in new environments and Patrick’s allergist just moved to a big, beautiful new facility. I’m very excited about this because he’s no longer sharing space with a regular healthcare clinic and there’s less risk of catching a virus there. But for Patrick, new spaces have to be explored thoroughly with doors banged, containers emptied, equipment disassembled. It’s a disaster. Also, because of a lifetime of doctor’s visits, Patrick doesn’t like it when I talk to a doctor about him and will do just about anything to get me to stop.

This day was particularly bad. I’d managed to get a tired Patrick to nap the day before, but insomnia kicked in that night and he was up till 12, getting just 6 hours of sleep.

The end result is that Patrick threw all of the flashcards, snacks, magazines, and tissues on the floor. Then ended up having to sit in a chair with all other furniture moved away from him. And then he screamed for most of the rest of the appointment.

I have to give props to Patrick’s allergist, Dr. Gleich. He still smiles, talks to Patrick like Donald Duck, tells me that I have my hands full but am doing a good job being patient, and just gets us through the appointment as productively as possible. He is a very good man.

So while I tried to keep as much calm as possible, Patrick’s allergist and I tried to talk through how transplant might change the strategy for his allergies. Obviously, the ability and need to eat are a significant step. And I wanted to talk about how to safely explore what he can have.. and just how safe it is to be dabbling in some of Patrick’s milder allergies while he is on immune suppressants that are making it so he doesn’t have many reactions.

I wish Patrick had been feeling better so we could have covered more ground. We reviewed Patrick’s last test results. The gist of them is that Patrick’s test results show him allergic to a lot of foods that he tolerates, at least to some degree. We still need to stay far away from cashews, pistachios, peanuts, and unbaked eggs with caution for other foods we’ve seen cause a reaction. He said to keep encouraging Patrick to eat eggs as an ingredient in baked foods as that mild exposure is believed to help kids outgrow allergies. He gave blessing to my efforts in allowing Patrick traces of milk, in extreme moderation. (Goldfish crackers, for example.) He actually was surprised that I was still being cautious about butter and regular cheese, but I pointed out that we see reactions to those foods.

He also took care to warn me of just how serious it is that Patrick’s spleen was removed, leaving him without a major defense against illness. He wanted me to be sure that, for any fever, I know I need to go straight to Primary Children’s. Some things don’t change.

And then, because we weren’t getting much further with Patrick screaming in the corner, we decided to not try additional testing that day. Instead, he asked me to bring Patrick back in July or August for repeat blood and scratch testing. In the meantime, we are supposed to explore and even push a little bit, with epi pen and benadryl nearby, and keep a log of what we discover about Patrick’s tolerances for certain foods.

I find that the further we get down this road the more obscure my question are. Neither Patrick’s allergist nor his transplant team really know how food allergies and immune suppression will affect each other. I don’t want to compromise Patrick’s new gut with a lot of foods he’s allergic to. (Food allergies can cause a sort of rashlike reaction and ulcers in the intestine). But I also don’t want to limit his nutrition and ability to wean off of tube feeds if that’s not necessary. I find myself wishing that I knew of an allergist somewhere who has an interest in transplant and immune suppression. I’m not sure such a person even exists.

Anyway – Patrick was asleep in the car 5 minutes after we left the appointment. Next time, I’ll try to allow time for a rest after school. Next time I’ll try not to go alone.

And maybe over the next couple of months we can figure out a schedule that lets Patrick outgrow naps, like he’s trying to do, without spending afternoons and evenings too tired and grumpy to function.

One other appointment this week, feeding therapy. Inspired by Patrick’s interest at a memorial day barbecue, I decided to work on hot dogs this week. I’m pleased to report success. So long as you cut the hot dog in half so he can fit it in his mouth. And watch him and remind him to take small bites. And maybe let him decide he’s done with the bun. Still, a victory in time for summer for a kid who doesn’t like his burgers grilled.

And speaking of burgers, I’m trying to figure out how to translate Patrick’s love of certain fast foods into a working menu at home. I’ve got him eating ham on english muffins a-la Burger King breakfast sandwich. And we’re working on thin sliced roast beef on hamburger buns as a tribute to Arby’s.

I do have one lingering worry. I’ve realized that if they do decide that Patrick can continue on to first grade next year, that means eating lunch at school. And right now, I mostly have taught him to eat warm foods. He does great with fast food, mac and vegan-cheese, pasta in red sauce, hot dogs, cooked veggies, soups, chicken nuggets and french fries. And this is exactly the sort of food that will be being served in the cafeteria. Except, well, that an elementary school cafeteria is not an allergy-safe place. I can’t expect them to watch for cross-contamination.

So I’ll be packing lunches. But I think one of the conversations we need to have in this week’s school planning meeting is whether or it’s an option to heat up food for Patrick in a staff microwave. (It’s already non-negotiable for me that he’ll need an adult to sit with him in the cafeteria.)

And Patrick’s feeding therapist and I did some brainstorming on cold foods that he might be able to eat if we work with him over the summer.

I’ve decided that we will for sure be frequenting the lunch park at the school next door again this summer. But this time, with the hope and goal of being able to figure out lunches that will work to send with Patrick to school next year. Last year, I was able to follow their menu and pack matching foods 80% of the time. But if those things can’t be warmed up at the school, then we may just have to work on being ok with eating the food you had packed for you, even when it isn’t the same as everyone else’s.

One other item of note from this last week. A family moved in across the street from us while we were in Nebraska. They have a little boy Patrick’s same age. We’ve talked about but not found a way to get them together to play. Until this week.. when this boy came and asked if Patrick could play.

This was a growing experience for this mom. I am trying VERY hard to stop being a helicopter parent now that Patrick doesn’t have IV’s to monitor. But it meant that both of us were a bit thrown by a same-age playmate. I’m not sure Patrick knew quite what to do with him. In many ways, he is like his peers. But in many ways, he still has a lot of growing to do. They drew on the sidewalk with chalk a bit, tried out all of Patrick’s ride-on toys. Then they went across the street and played in his yard, too.

I was doing my best to stay looking busy but also keep an eye on them. And to let Patrick build this relationship on his own without my coaching. Mostly they drove Patrick’s ride-on car up and down the street.

When I picked Patrick up for dinner, he was enjoying a snack of animal cracker. I was grateful they were safe, and I decided that next time I send him to play I need to make sure they know he has allergies.

It’s been a full week. I sometimes think my head might explode trying to hold all of this and have a normal life, too.

Another IEP meeting behind us.

I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.

So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.

Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.

It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.

I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.

As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.

But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.

My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.

In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.

Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.

Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.

But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.

Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.

And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.

At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.