Thursday, August 27, 2015

Did That Just Happen?

Evan hit his behavior therapist tonight. I'm appalled that he did it, but glad it was her and not anyone else. Agh...I don't even know where to start...

Let me back up two days. On Tuesday, Evan had 4 hours of neuropsych testing during which, according to the doctor administering the tests, he did a great job testing and worked very hard. From there, we went to my sister's and Evan played with his cousins. Yesterday, he fell apart. In my mind this was a totally expected outcome from the previous days activities, but he was so out of sorts at one point that he couldn't tolerate any noise, not even the microwave. He did manage to play for a couple of hours with a friend at an indoor amusement place, but as soon as he came home he was a mess again, ultimately falling asleep before dinner and then going to bed really late.

Today, we went to his school to see his new classroom. The visit went well, but the school is under construction and a bit of a mess, and people kept coming up to him and saying hi and he was being continually prompted to interact with them; I'm sure this was all a bit overwhelming for him. After lunch he got his haircut (super cute new look, by the way) and then wanted to go to a playground; the girls were with friends, so it was a perfect time for he and I do something together, only he decided he wanted to play alone and then started stalking a girl at the park while claiming to be a chameleon and ruler of the earth...funny until he threw a stick at her, because yeah - he wasn't joking, he was trying to destroy her.

O.k., so we made it home, at which point Evan entered into his imaginary play. Now, he has been doing this solitary play for more than a year; we asked about it at one of his appts at the Lurie Center (Mass General's autism clinic) and they explained to us that this play was a common way for kids with autism to regulate themselves. He gets mad if you interrupt him and it is because, so they say, his play has a beginning and an end, and it has to complete the full story in order for them to move on. We definitely see this as a truth with Evan.

So, his therapist came in late this afternoon and interrupted his play. The rest, as they say, is history. He was terrible with her, screaming at her to leave the house and never come back. She, being an amazingly patient soul, kept at him (kindly) and even got him to the place where he would play 'monkey in the middle' with the two of us. Unfortunately, she was chasing a ball that he was trying to catch and he hit his head, and this was the point at which he hit her. Not hard, but does that even matter?

I'll be honest, I feel like when we tell people about Evan's behavior at home that they tend not to believe us because he is usually such a good boy. Also, young cute kids get away with a lot. I'm glad he had such a bad session today with his therapist (his worst session, ever, actually) because it validates our own experiences with him. If we don't address his behavior now, chances are quite strong that he is going to grow up to be one of "those kids" that no one wants to play with or be around. Maybe not always, but many times can you hit or yell at your friends before they decide they've had enough?

Evan is now back into his imaginary play, yelling at the girls if they even step a foot into the living room, which he has declared as HIS space. Tomorrow he is having 2 hours of speech testing, so that should go well ;)

Oh, and the girls don't like his haircut. They seem fine with the fact that he hit his therapist, but don't like his hair. Priorities people...priorities...clearly they've seen their fare share of hitting. Sigh...

Sunday, August 23, 2015

Date Night

So, this was my view on my date night with Jayme. Out of the frame were the 3 girls also there. Yep, good times...

My Mom had offered to watch the kids while we were in Maine last week so that Jayme and I could go out for dinner. Evan, who doesn't like to be left with many people but typically begrudgingly complies, immediately had an issue with us leaving him with Nana and Grandpa. Ultimately, we caved and I grumpily drank down my glass of wine while reminding myself that in a few years I'll miss these kids terribly when they want nothing to do with me.

I think I can guess at why Evan was so distressed at the thought of us leaving. My parents are both hard of hearing (sorry Mom and Dad), and while Evan uses both his sisters to help him in situations when we aren't there (and sometimes even when we are), I think the idea of communicating with my parents during dinner time in a place that was not his home was just too overwhelming. Evan's typical tolerance for the number of times he is asked to repeat a question or phrase is 3; now imagine a child with auditory processing difficulties and a speech and language delay getting his needs across to a person who is hard of hearing, and vice versa - you can see how stressful that might seem to him. Truly, I'm just guessing at this...I could be way off. But, in an effort to cover up their inability to hear things accurately, my parents will often say things or use facial expressions that don't really fit what the other person is saying; imagine how difficult this is to someone like Evan, who gets confused at the slightest ambiguity of a phrase or expression. At the end of a full day, I just don't think he can always deal with it.

Anyway, once you include one child on a date, you might as well take them all. The restaurant was crowded and noisy, and Evan was tired, and the pictures above illustrate what happens in that environment. It is in these moments when I feel the most different from other families. Where his behavior is so different from other kids his age, and he's got his headphones on, and I'm thinking as I look around and see the people look at him, and then me, and give a hesitant smile that I'm feeling very special need-ish at the moment. I wish I could make it through this dinner without him having to need me, but I know he can't. Not long after I took these pics, I was sitting on the bench with him on my lap, giving him pressure in hopes of keeping him at the table long enough to eat some dinner. On this night we were successful, and he made it long enough for all of us to eat before he needed to leave. I've had many meals "to-go" on the nights when he can't make it.

We ended our week in Maine at my Dad's retirement party. Lucky me, I got to eat dinner in the dank basement of an old ski lodge, sitting on a bench across from the men's restroom. Just me and Evan, in the quiet of the musty cool air. Yep, good times...but I'm looking forward to a real date sometime soon.

Thursday, August 13, 2015

Last Day of Summer School

If I had any misgivings about moving Evan into a different summer class 2/3 of the way through the program, they were all put to bed today. I picked him up at the end of his class, and the most amazing thing happened...he became sad, and stayed sad for 3 hours.

I thought it interesting that as he was leaving the school, he turned around and saluted his teacher and said something to the effect of, "enjoy the rest of your summer, matey!". See, Evan does not usually greet or say good-bye to people; this is a skill that typically requires prompting on my part to make it happen. In fact, his private BCBA picked up on this and asked if she could start a teaching program; I was sort of taken aback because I didn't realize that it was so obvious (of course, this is what she does, so it makes sense that she would see the deficit). So, when Evan turned and addressed his teacher in an animated and loud voice, it made me stop in my tracks.

Then, as we were walking to the car, Evan said, "I miss Mrs. C".

Huh, I thought, this is odd.

Again in the car on the way home, he said that he missed her and he was sad. And then he said it again, and again. And then he sat in his chair for 3 hours all melancholy (to the point that I thought he was going to cry) holding a paint set and toy fireman that he got in a goody bag from the teacher and aides. Then he asked me if I thought he could visit her.

Here is the thing that I hope I can convey...he has never expressed this level of sadness before. Never, ever. Not even when our cat died. Though I know that Evan has a myriad of emotions, he displays very few. He is content, happy, playful, or mad. Often when he is hurt or sad, he becomes mad. His thoughts may be complex, but what he conveys is not...I would guess that this is a common feature that perpetuates all those stereotypes about autism, like that they can't understand emotions because they don't appear to feel them themselves. Any autism parent will tell you that LOVE is felt in a thousand different ways that don't require a kiss, a hug, or spoken words. Has anyone ever wondered why I talk to Evan slowly, concisely, with exaggerated facial expressions and intonations in my voice? Because this is how he'll learn to detect emotion and express it himself; we have to teach him everything that most people learn by osmosis, so to speak. And so we model it, and talk our thinking process out loud, and say the most obvious things and I'm sure that we look totally crazy in the process. I don't care...I think it's working.

I'm not sure what his connection is to this woman. I fear that part of it has to do with the fact that he entered a class of tough boys, was polite and kind, didn't have any behavioral problems, and was therefore a breath of fresh air for this teacher. "She was so nice to me", I heard Evan say more than once. Because I am sensitive to the fact that no child is innately bad to the core, I know that most behavioral outbursts by kids in a classroom setting are because they are not having their needs met. I hope that the addition of Evan into this class did not make it more difficult on some of these other children. It may have. It probably did. But it appears that he thrived. Welcome to one of the guilts of special needs parenting...if you were on a sinking ship, whose child would you save, yours or your friends? It's not so much different in the educational setting.

Enter the miracle middle child to bring Evan out of his funk. He has been much happier this evening but is still talking about visiting his teacher; I'm sad for him for missing her but thrilled that he's reached a new emotional milestone. Gosh, this kid has got potential...

Thursday, August 6, 2015

School Update

I just sent the email to officially pull Evan from his original summer programming. He will finish the session next week, just in a class that he was not initially assigned to but is a better fit for now; it is a half day program, half of what he needs, but as there is only one week left, I'm willing to let this go. And by letting it go I mean sending a letter to the school full of complaints and cc'ing our attorney.

I skipped CrossFit today to edit my letter, but that exercise was a luxury that I couldn't take time for today. I was rushing, too, to get things done so that I could take Evan to a playground playdate with a friend after school. The playdate went super well; we were the only ones on the playground and were with good friend, thankfully, since Evan had to poop in the woods. But hey, it wasn't in his pants, and it didn't phase him in the least so - YEAH! I just pretended that I had a dog to mentally get myself to the point where I could clean up the poop...hello, there are ticks everywhere in the woods and I wasn't prepared, so I didn't take him far off the beaten path. And, I'm not that much of a weirdo that I would leave the poop there. Anyway...

So, all went well. Until the ride home when my middle child told me she was hungry because I forgot to feed her lunch. Oops.

Wednesday, August 5, 2015

Sometimes Things Are Overwhelming

I'm a bit overwhelmed, and this piece may be a bit frantic or choppy, and probably long, but I think it will help me to write it out. I also wanted to capture, for those who don't live this, a bit of "in the moment" craziness.

We all know raising kids is overwhelming. Life shoots us crazy things like flat tires (try that with an autistic child), sick parents, and fruit flies. I'm a middle child, so these things often happen to me...I am the walking Murphy's Law example. So, welcome to the last two days of my life:

I rushed home from my long weekend to get my oldest into the doctor for her 4th antibiotic for a persistent ear infection. I happened to see a nurse practitioner fresh out of school (I dare say incompetent, but she was probably nervous) who couldn't even do an ear exam. No worries, I asked for the doctor...problem solved. I did, though, have to try to find the fastest ENT appt I could, which is not easy, and so spent time of the phone doing that. And managing a new antibiotic, around the clock ibuprofen, and 2 times per day ear drops for both ears.  O.k., this was all doable.

Yesterday, my middle one wakes up complaining of an ear ache and headache. By the afternoon she has a low grade temp and I start her on medicine. Oh, I've not been sleeping, by the way, because my oldest has been up every night needing medicine. So, now I'm groggy and I've got two medicine schedules to keep track off. Thank goodness they are old enough to help me remember.

Evan comes home from school next and immediately starts becoming destructively angry about his summer program. Uh-oh. Red flags are flying in my head. More red flags I should say, because I already complained last week and changed part of his day around due to some issues we were having, but now he is really angry.

Can't worry about it yet, because next is his speech group from 3:30-5:00. This goes well for Evan but the Mom of the other child and I talk almost the whole time about school and other summer programs, so my head is spinning, but just a little.

Next I rush to make dinner before moving straight into Evan's 2 1/2 hour ABA session and my concurrent sit-down session with our speech therapist about Evan's IEP. I had a great talk with our speech therapist and I'm so thankful that she is on our team, but she tells me some things that are hard to hear. Like that Evan probably has a language disorder outside of his autism diagnosis. It's o.k., though, as this is not unexpected news to me and I need this information before Evan's next neuropsych testing in a few weeks so that they can start to zero in on this. But this does get me closer to a new fight with the school, and she does tell me something that makes  me may have to let him fail before the school will agree to change his programming. That just stabs my Momma heart because the thing I want most for him, after good health and happiness, is for him NOT to fail.

I have to move on, though, because as I'm in this meeting, our private BCBA and owner of the company calls and texts me...he has something important to discuss. I already think I know where this is going, and since two of Evan's therapists were in my house at the time, I didn't think it was that someone had quit our case. So, I say good bye to our speech person, got Evan in the shower with the help our our therapist, and called our BCBA back. This requires bold print: our insurance company has said they made a mistake and as of today (Aug 4th) they will no longer be covering ABA services. I'm too shocked to cry this time. Shit. I call Jayme, who will sue everyone under the sun until this gets solved, and he talks me down. Mostly.

Lunch yesterday for me was at 2:45, dinner at 8:45. I had to fight fruit flies off my wine.

Evan wakes up with new aggressive anger. Yep, time to do something about school; I think I have to pull him out of the afternoon program with one week to go. I call the school BCBA and talk to Jayme.  He tells me to call our attorney and don't do anything without a paper trail. So, I called the attorney, drafted a letter and sent it to her for her edits, and met with the BCBA. This matter remains unsettled.

But, in my tunnel vision with Evan, I missed the spring window to write letters to the school principal regarding teacher placement for my middle daughter. Of course she got the one teacher I didn't want her to have, so now I have to advocate for her and met with the principal today (right after I met with the BCBA, because time is tight after all). This matter also remains up in the air. Next time, Gretchen, don't forget to advocate for your middle child. Right.

I'm eating lunch as I right this. I had planned to exercise, but couldn't squeeze that in yet today, and honestly, my window for that is probably closed. There has been no time to clean, pay bills, do laundry and everything around me looks like a disaster. I have to go make Evan's smoothie, get him from school, and then there is home ABA from the school, a decision to make about the remainder of the summer program, the letter to edit from our attorney. Crap, someone probably is going to want dinner tonight. I think we'll have ice cream.

Got to go, will follow up later...

Monday, August 3, 2015

What Happens When You Play Hooky

So, I am back from an interesting weekend. I try to get to my childhood home several times a year...the kids always have a good time and it is the place of Evan's cemetery and death fixation (hopefully this makes sense from some of my blogs last year); the family cemetery is always the place he visits first when we get to my parent's farm.

I started the long weekend with a 45 minute wait at the doctor's office for my oldest daughter who has an ear infection. We had to make a stop at the pharmacy on the way to the highway, at which point Evan became fixated on a know, one of those knobby things that you can massage your muscles with. I stayed strong and didn't buy it for him, but then had to listen to 3 hours of talking about how he just has to have one.

Then, we stop at a gas station to use the bathroom along our way. After using the potty, Evan was walking through the store wondering aloud what he was going to get. "I think I'll just get a beer." he said. In front of a long line of customers. Oh, boy...

No, we don't actually let him drink beer.

The next two days were marked by obsessive, repetitive, and irrational needs that almost always ended in tantrums. They included continued talk of the massager, his desire to catch a fish with his bare hands and eat it, and the need to throw away a large bucket of Legos so he could buy a new one because his instructions had ripped and therefore tainted the whole thing.

Fortunately, most of these tantrums were short in duration. And, as is his nature, only in front of myself and the girls.

On our drive home, there was this question: who buried your Grandpa? Sigh...this again? I explained, for the umpteenth time.

I'll add here too, that Evan has regressed in several areas this summer. Some are at school, with my biggest concern being that he is not eating. At home, he is again refusing to shower and will only wear one pair of pajamas. During our long weekend, though I had a nightly change of pjs for him, he would only wear his favorite pair, and under the circumstances I didn't have the energy to tackle the tantrum that forcing a different pair of pjs would have brought.

 Evan has been great since we got home. It's amazing to watch him drop right into his normal routines; this afternoon, he got into our house and went immediately into his own world. I suspect that it is not as easy for him to do this in places that are not as comfortable for him, but this activity is essential for him to rest his brain and center himself. I expect that much of the obsessive behavior I saw while we were gone will stop now that we are home...always a good reminder of how much work we have left to do to make him functionally appropriate in places besides our house. After the last 4 days, though, I could use some time in my own world too.

Now into the shower and clean pajamas. Wish me luck.