Tuesday, March 31, 2015

We Lost Power...

...and this is Evan's tantrum because he can't A) microwave popcorn, and B) watch Sponge Bob. The girls are surrounded by candy at the moment decorating Easter houses, but he'll have nothing to do with it because he is so mad.

So, he just asked for pizza warmed up; I wonder how it would do in a frying pan? Think I'll try old fashioned popcorn instead.  Good times...

Monday, March 30, 2015

Can 1 Person Make a Difference?

I've started and stopped more than one blog about special education; it's, frankly, too overwhelming to write about. This is a process that should seem easy, but isn't, and it's difficult to appreciate if you've not tried to get services for your child before. We are 3 years into SpEd for Evan; we've had some good advocates for him in the schools system, but the journey has been difficult and we now have both an attorney and an educational expert that we work with. I'm going to skip those 3 years for now so that I can share what has happened in the last month, but I do want to plant this seed to illustrate just how far we still have to go to get kids with autism the services they need to be successful in school: Evan is the only child in our town (with about 800 kids in public school) that gets home ABA services from the school. Evan is certainly NOT the only child with autism.

A significant part of my Mom job involves being case manager for Evan; I handle all the therapy, insurance issues, Dr. appts, paperwork, and research. Jayme will definitely fill in when needed, and he is an amazing advocate for Evan. In December we began more intensive private ABA in our home, something we had put off for awhile, and while the school ABA therapy is good, we really started to understand the importance of, and the science behind intensive ABA. This was so profound for us that I started researching the importance of an ABA approach in school so that I could take some information with me to an IEP meeting that we had scheduled in January. At that meeting, I expressed my feeling that it is vitally important that every adult that works with Evan have an understanding of ABA principles and are consistent with their language use and approach with him. This was met with blank stares, which honestly is the reception I expected, but after that meeting at least 2 of the team members signed up for an ABA class that the district offers for continuing education credit. That was great, but not enough, and I wasn't done yet.

Evan's annual IEP meeting was scheduled for the beginning of March; I was expecting this meeting to go smoothly, as we have met two previous times this year as a team to fix some bumps we were having. We opted not to bring the attorney for this one, so it was Jayme and I and  8 or 9 team members from school. What the team didn't know, however, was that I was going to ask for an ABA classroom in the school; they've got the space and the need, and I've got the research to show that it can be life changing for some kids with autism. When I dropped this on them at the end of the meeting, it was met mostly with silence and shock, then some off-the-cuff sputtering by the district BCBA (certified behavior analyst). We ended the conversation by telling the team that we don't expect an answer on this right away, but we would like to have an open conversation about the merits of such a program. What we did by putting them on the spot like that, was to create accountability for the conversation; they ALL heard it, and none of them could dispute the fact that it needed consideration. We followed up this meeting by providing the whole team a letter with some of our research attached, asking again for a discussion of the possibility, and stating that I am available to help in any way as I know that a change in programming is not without it's hurdles.

To be clear, what we invision for Evan is that the majority of his academic learning will occur outside a typical classroom, in a small group setting, with an ABA based curriculum. Now, this goes against what SpEd has fought years to provide to everyone, which is inclusion. I understand the need for Evan to be around his typical peers...he will learn from them in ways that adults can't model. However, ultimately our goal for him is to succeed in life, not in a Kindergarten classroom painting at the easel. He is social, yes - but he can be social in specialist classes, at lunch and recess, and with the other kids in a small group setting. Let's not pretend that he will be a social butterfly one day; I'm glad all his classmates like him, but most (sadly to say because many of these parents are my friends) will not be his friends as he gets older. So, yes, remove him from class so that you can teach him the way he needs to learn. In this opinion, I'm not alone; I know several other parents that feel the same way. Inclusion works when you can make accommodations so that the learner can access the curriculum; I can say with certainty that Evan cannot access the curriculum to his potential in a typical classroom. The other important thing to remember about autism, is that there are things that typical kids learn without being explicitly taught, like the concept of time or how to have a conversation or that 2 + 1 = 3 works the same in the classroom and at home. By not understanding this about Evan is to deny him his right to learn. Finally, I'll say...has the current system worked for other kids? Yes, you could argue it has, though many of these kids really struggle as they get older, but here is what I am saying: o.k. is not good enough. I want, and Evan deserves, THE BEST.

Where am I going with this? Last week I received a call from the district BCBA who told me that after spending significant time thinking about what we had said in the meeting and in our letter, and sitting in discussion with the SpEd director, they have decided to form a task force to look at how we are utilizing ABA in our district and how they can make it better. This will include looking at other school systems that do it better than ours, and will call for parent input, as well as the input from behaviorists across all of our schools. No, this is not the end of the battle, but I sure do feel accomplished because before this there wasn't even a start line. This fight is not just for Evan, but for all the kids that can benefit from an improved understanding of autism and use of ABA in our schools, and I will not stop until progress has been made - these kids deserve it.

Friday, March 27, 2015

Autism is a Neurological Disorder

It's hard to remember that autism is a neurological disorder, especially when it's diagnosed using the Diagnostic and Statistical Manual of Mental Disorders (the DSM-5 is the latest version).

It's hard to see all the problems a person with autism deals with because most are hidden: the low muscle tone and poor muscle coordination, the gut difficulties (some related to food, but many related to the way the smooth muscles of the gut work), the sensory processing disorders, the language disorders. Most of what people see are behaviors.

One of the reasons that I love the Lurie Center is because they consider Evan as whole individual but treat him as if he has what he has: autism. They understand that it affects his whole body, and they look through an autism lens to treat things, like urinary frequency, that you wouldn't necessarily think would connect.

Sometimes, though, like when Evan is sick, I rely on my family practice doctor to get us through. If you regularly read my blog, then you know that Evan was very sick last week. He is finally back for a half day of school today, and though still weak and tired, he is nearly back to normal. EXCEPT for the low grade temp, that he just can't seem to shake. If you are keeping track, today is day 10 with an elevated temp. It fluctuates at this point from mid 99 range to high 100 range. I'd be worried, but he is acting so much better, is eating and playing, and has his silly sense of humor back (he went days during the height of his sickness without talking more than a couple of words a day but told me today that my butt felt like jello). I was supposed to go back to the doctor yesterday if his fever was still present, but I didn't and here is why:

     I started thinking yesterday that perhaps his fever had more to do with his autism and less to do, at this point, with a virus. What if it just takes his body longer to regulate itself than the average person? What if this is neurologically based? So, I decided to see what I could find on the internet about that...

Not much...

     What I did find about autism and fever is that a significant portion of the autism population actually display improved function when they have a fever. Crazy. But, what I also learned is that an area of the brain that regulates fever, the Locus Coeruleus, is also associated, when activated, with many of the functions that go awry with autism like emotional regulation and environmental adaptability. Huh.

So, here is my theory...Evan is fine, but his brain is a bit sluggish in regulating his temperature after the most vicious virus ever attacked his body. And I sent him to school.

I could be totally off base on this, but it sounds good, right? What this experience did solidify for me, though, is that I can no longer count on my family practitioner to give Evan the best care he needs and I'm switching to a neurodevelopmental pediatrician that also does primary care as soon as I can. To treat Evan means to treat and respect the complexities of autism also...I just wish I had made this switch 2 years ago when I first entertained the thought. I guess I'm also ready to stop comparing him to typical kids his age, and ready to compare him to kids more like him. Of course no two kids with autism are alike (as everyone is fond of saying), but neither are two typical kids alike. But, there are similarities, and I want a doctor who knows that. Take potty training for example - Evan is off the charts beyond late for a typical kids his age, but does anyone know the average age for a boy with autism? A couple of my friends with older boys told me their kids were 8. EIGHT. Yikes.

Evan did great, by the way, in his first afternoon back in school and said all his friends tried to hug him. I promise, Moms, that I wouldn't have sent him back unless I thought he was germ free :)

Sunday, March 22, 2015

Day 5

Day 5 in to what I hope is just a bad stomach bug and not a food born illness or something worse.

This sickness would have been bad had any of my kids gotten it, but here are some things that have a little autism twist...
- I'm 2 pull-ups away from being on the 5th package. Yes, that is a lot of poop changing. There is no child that could get through this with at least a few accidents,  but there is not even an attempt to get to the bathroom with him. I've had to ask two friends for extra plastic shopping bags because I've emptied my supply in an attempt to keep everything wrapped and sealed and as least potentially contaminating as possible. Thank goodness my town has not banned these bags yet.
- On a good day Evan is particular about his food, so trying to get him to eat or drink anything besides water is a challenge. He wanted Pirate's Booty a couple of days ago, and it was a challenge to talk him through that and convince him that maybe Saltines would be better on his belly. He is drinking a lot of water, which is great, but he needs some electrolytes and he's just not getting them.
- Evan won't take medicine...nope, can't talk him through that. I use over the counter acetaminophen suppositories and specially compounded ibuprofen suppositories. The problem is, of course, that he is pooping so much that I have't been able to give him medicine since Thursday.

Now, to the every-sick-child-does-that:
- He only wants Mama. I've slept on the couch for the last 4 nights, since he's been camped out in the living room and is awake several times a night (the first night was nearly every hour). And, I've done 100% of the care since Daddy has a heavy travel schedule right now...and he's a germaphobe who doesn't want to get sick.
- I haven't run since Wed (that run was cut short by the phone call from school to go pick up Evan), and my hopes for a decent Boston Marathon run are dwindling. Oh, I'll finish...after 20 marathons I know I can finish, irregardless of my training...but juggling this journey and not losing myself along the way is something I've struggled with for awhile now.
- Did I mention that I've felt sick since Wednesday? This is probably due to excessive coffee and a high carbohydrate diet in an attempt to eat bland food, when I had been trying to cut back on both those things. Most likely, though, it's a result of my severe hypochondria. Probably both.
- The rest is pretty standard - I can't leave his side, I've not cooked anything more than pasta since Tuesday, I've managed two showers but both times it ended in a rush to get to Evan because of vomiting or diarrhea, I've not gotten dressed since Wed (and then it was into running clothes).

On the bright side, I've read a lot. Today's reading will include Evan's 29 page IEP. Also, I'll send Jayme and the girls to the grocery store and I'm pretty sure they won't even complain about it.
Lastly, I think I've earned myself a spa day, so message Jayme if you have any suggestions of where he can send me :)

Thursday, March 12, 2015

Oh, The Shit I Put Up With

Literally...as in, two poops today, both with some down the leg and onto the floor. The second time, some got stepped in so the socks ended up in the trash too. This is disgusting, but o.k., when you have a baby or toddler. This is not so o.k. when you have a 6.4 yr old...not that I'm keeping track of his exact age...alright, I'm keeping track. The worst part is that I can't act disgusted because it causes Evan anxiety. So, today, the second time around, I was trying to hold it together and Evan, picking up on my distress, kept saying Mom, you don't have to hurry; this is not what he meant, of course, but it was the only language he could come up with at the time.

Then, as I'm literally scrubbing 6.4 yr old's poop out of the carpet, Shayna hot glues her leg.

At this point, I washed my hands and went for another drink of my beer. Because, oh...right, I was just starting my dinner when the second poop debacle started.

Thank goodness Jayme was home so I could hand off the hot glue gun burn (yes, the glue is still on her leg - does anyone know how to get this stuff off?) and I continued my poop patrol.

There is rarely a dull moment in a house with autism. Currently, Evan is packing a box with food for his friends; so far, it contains popped popcorn, a sleeve of crackers, Goldfish, graham crackers from Christmas, cereal, a yogurt drink, and a chocolate milk. Good luck to whomever's house this ends up at :)

Friday, March 6, 2015

Two Year Anniversary

Today marks the two year anniversary of Evan's diagnosis. I wish I had something profound and deep to write, but frankly, I don't have the time. Evan has 3 1/2 hours of therapy today after school, and the weekend is packed with craziness. Reflecting upon this day, however, there are a few thoughts I have to share.

First, I've learned through myself and by watching others that the capacity to love is exponentially greater than I thought possible.

Second, it truly DOES take a village to raise a child. I've called in more favors than I'm comfortable with; usually it involves rides for the girls to/from activities, but sometimes I've needed food or medicine. I'm incredibly grateful that my village is large and helpful and I hope my friends and family know that when I text THANK YOU, it really truly means that without their help my day would have been much more difficult. I'm thankful also that my family knows that Jayme and I need respite, and will always take the kids when we ask (though they try super hard not to have to change a poop).

Third, one of the greatest gifts this journey has brought me is the comfort of new friends. I have great friends that have been my network for many years, but with these new friends I can laugh at the most incredibly inappropriate stories of our kids without feeling uncomfortable. We exchange information, we refer each other to new therapists, we compare IEPs and school services. It's taken a bit of time, but I've found some great people that I know will be in my life for many, many years to come that understand my struggle inside and out, and for that I am incredibly grateful.

Lastly, there are amazing people out there that have the capacity to care deeply for children that aren't their own...people that get stinky feet stuck in their face, that hear I hate you and you're stupid and can keep smiling and acting kindly anyway, people whose jobs can take weeks, months, or even years to see progress. Those people exist, and we surround Evan with as many of them as we can. Without them, we wouldn't know how to parent Evan, and his prospects for the future would be bleak. There is no way to thank them appropriately.

 Evan has made tremendous progress in the last two years, and though we cannot know what his future holds, we remain ever hopeful and feel grateful for all of those out there that will help us get there.