Back on track

This morning's post on one of my favorite blogs really made me stop and re-assess. Least Restrictive Placements (LRE), Free Appropriate Public Education (FAPE), inclusion, becoming a contributing member of society - these are common goals for parents of autistic school kids. We do the best we can and we wonder about the cards we have been dealt and the choices we have made.

Some of our tougher cards are living in a school district that is under a court order because of how poorly it's done in regards to special education. Having a child with a disability of a level that prevents "passing for normal" is another. Living in a large city with a necessarily large bureaucracy is yet another. Sometimes I get so caught up in problems and frustrations that I forget how well things are going.

In the interest of realizing that the glass is way more than half full I'd like to list some really great things:

• msk might be the only autistic kid in his school, but I've never heard anything but positive statements from staff and kids (excluding usual 10 year old boy stuff, which is actually kind of comforting because they treat him like a regular classmate)
• when we thought we were ready for a less restrictive placement there was skepticism, but nobody blocked us
• our team is willing to meet at our request about issues and listen to our concerns without getting defensive
• positive stories and amazing observations always make it into our team meetings - it might slow us down a little, but it keeps us focused on the idea that having msk around is a delight and not a burden
• our support system is awesome - older siblings and grandma who can baby sit so we get a night out, a state autism program that provides a tech for support outside of school (like aftercare for extra socializing time), Special Hockey for sports and teamwork, a nearby park for exercise and unstructured time

When we first started on this journey I wondered about changing school districts and I still get advice from people telling me we ought to move. Honestly I can't imagine it working out this well if we had had the freedom to move, or the money to pay for an expensive special ed private school, or if we could spend all of our parenting energy on one kid. Sometimes it all falls into place.

Ghak...

I just realized that along with the maturity I mentioned in the last post comes hormones. Hormones and attitudes of pre-pubescent boys are just starting to hit our household for the first time. Add to that the lack of verbal skills of an autistic kid. Jeeze, this should be a fun stretch.

I don't think anybody's taking resignations, so there's no choice but to live through it. Wish me luck!

New year's stretch

There seems to have been a quantum shift between the summers when msk was 9 years old and this summer, at 10. Behaviors that seemed eccentric in the past are now clearly out of the norm. Part of it has to do with that lanky pre-adolescent stage - he's just not that cuddly little guy anymore. Another part is that he's not as quiet and withdrawn. There's often a constant stream of rather loud replays from computer games, Youtube, DVD's and emotionally charged events from real life.

At the same time, this summer msk wanted to go places and be with people much more than he had the year before. A lot of this I attribute to his school year in an inclusion setting. Lots of teamwork and acceptance has made him enjoy the public. A trip to the funky little grocery store by our cabin brought my kid an amazing amount of joy and excitement. That excitement meant that blending in was out of the question. So it became a summer of transformation for me as well - no more quick, surgical shopping trips. I learned to look for opportunities to talk about autism, giving people the benefit of the doubt. Sometimes the annoyed/confused stares gave way to connections and kindness.

I'd really rather blend into the crowd. And then meeting strangers' attention with trust and openness is also hard for me, but then I think of the challenges that msk faces every day and I know I can push through my discomfort. His whole life is a story of perseverance through discomfort and confusion. All of our social rules and feedback loops are a total mystery to msk while at the same time they are so intuitive and obvious to us that his difficulties are incomprehensible. But he finds joy in existence and moves through his frustration. Now it's become clear that slowly, slowly, he is drawn to become a social being. Perhaps not in the center of the action, more likely tangentially observing, but he is drawn in. These are changes I never expected. We'll see what comes next.

Trying to hang onto optimism at the start of a new school year

So here we are three days into the school year and I'm already having to call on all my reserves of patience and diplomacy. I have to go through the whole mantra - "I believe in the public education system. I believe in the right of all children to receive a Free Appropriate Public Education. I believe that all children have the ability to learn. I believe that with powerful advocates, every child can be successful in their education." - Breath in, breath out.

Why on earth would you want to uproot an autistic child - you know, the ones who are looking for order and stability in a world that is way too chaotic and unpredictable? Getting through the summer was hard enough. Where neuro-typical kids are joyful about a summer of unstructured time, msk starts having anxiety issues in those final weeks of school. Too many parties, too much free time... changes are coming and that's scary. Then finding structured activities through the summer for an autistic kid who needs challenges and stimulation from people who are open minded enough to value an autistic kid, while at the same time having constant supervision and support. It is a nearly impossible task and it wasn't achieved this summer. Maybe next time.

Regardless, we made it through the summer and for the last few weeks there have been beaming smiles whenever the conversation turned to getting back into the school routine. We had a meeting with the new teacher and worked out a plan of action. We had sent letters praising last year's team and especially his aide. Last year the school funded her training to learn about autism. She made a real connection with msk. Honestly, she was a big part of the reason that last year was our most successful year since pre-school.

We practically begged for her to be sent back to help my kid. When she showed up we were ecstatic. Then another aide showed up and last year's aide was sent on her way. So basically the bureaucracy feels free to drop in a new aide without considering the problems this would cause or caring if any of the directly involved parties (the parents, the student, last year's aide, the school's special educator and principal) knew what was happening, much less had any input. At the least we all would have just liked to have known ahead of time.

The only thing I can say is there appears to be consistency. This was exactly the way we were all treated when it came to ESY planning (that I posted about here, here, here, here and here).

I guess City School's new goal of reaching out to parents is for parents of kids without special needs.

RIP Edward Kennedy

Perhaps this post is a little out of character - a post on national politics and seemingly not particularily personal. Typically most national politics really doesn't affect my life very directly. I'd have to say that is not the case when it comes to the body of work that Senator Kennedy acheived in his career. Laws that have to do with the rights of the disabled have massive impact on my life and on the lives of special needs children (like msk) and adults. It's hard to overstate how different our lives would be if msk was not getting educated, which would be the case if there was no IDEA law. It's hard to imagine msk's future without the ADA law. These are laws that Senator Kennedy was instrumental in developing and getting passed. If you're interested in seeing his history in Disability Rights you need to look at his position page. If he had done nothing else in his life (and that's certainly not the case - he's dedication to almost all social justice issues is easy to see), he would be a hero to me.

Rest in peace.

Finishing up summer

Two and a half weeks until the first day of school. For the first time in years all three of my kids will be in the same schools as they were last year, so no new school anxiety to deal with. Another miracle is that none of the three schools disasterous placements, so we won't be spending this year making plans and counting the minutes to get a kid out of one school and into another. That's not to say that won't be moving into new schools a year from now, but it'll be because we've aged out as opposed to finding an escape path. That's a topic for future posts, for now it's time to coast into the end of summer.

Time for our ten days of vacation, away from the city and computers and such. Time for hiking, swimming, kayaks, reading, board games... you get the picture. I'm looking forward to some one on one time with my special kid where I am taught the beauty of time moving slowly. With autistic kids there's a feeling of perservative behaviors being a problem, a deficit. I've found that being with a child as they work on making sure every rock by the side of the stream is completely splashed is a lot like a zen meditation. Slowly you let go of the nagging worries and the plans and the voices. Finally you just exist in the now. It's pretty inspirational, really.

Tubing Broad Creek

My feet submerged, find sun amidst the shade
As rushing noise drowns calls if I would try
No matter – his response would not be made
I stand guard waiting for him to float by

The cooling water rushes - needs to go
The boy stretches my gaze, I stand and wait
Like Holden in the rye my time moves slow'
A catcher, lone and patient is my fate

When young I could not fathom how one’d dream
Of blocking cliffs so kids could play all day
I now find comfort standing in this stream
Sun warmed and water cooled I gaze and sway

In stillness watch, commitment holds no fear

In sparseness my true purpose becomes clear

Remember to count to ten...

OK, look, I know ESY is only four weeks long (which for kids that can't stand the 2 weeks off prior and the 5 weeks off post is actually a crime...but that's another post). I know that you can't expect a perfect fit or a lot of training from people who never meet with the IEP team or parents or even msk (again that's another post). I know that there are staffing and budget issues. But...

The one-on-one aide (or para-professional or whatever the current term is) is assigned to my child. Being with and guiding said child is their entire job. They are not an extra set of hands and feet to run errands for the classroom. It is not OK if they can't come to work on time. The IEP is not some sort of squishy guidelines that you can choose to follow if you want or if it's convenient.

OK. Now that I've vented it's time for the count to ten. Breathe... remember that this is short term and, following the lead of msk this placement is a positive thing. Breathe... only four days left. Calmer now... but if anyone tries to tell me how great special ed services are in Baltimore City, I think I might take their head off.

Good news/bad news

Good news: ESY seems to be OK
Bad news: ESY started two weeks after school is out and my kid can't stand a two week break.

We started ESY this week, and though I was very skeptical about it being appropriate I think my special kid (let's use msk since I don't feel comfortable with names on this blog) is joyful at being in a setting with academic challenges and kids with social and verbal skills that are higher and so draw out more social and verbal activities.

During our two week gap, after school and before ESY, we had placed msk in a camp for kids with autism that qualified as respite care under Maryland's Autism Waiver program. We didn't need a break, but msk needed a daily structure that is impossible for us to provide. It seemed like a setting with people with a lot of training in autism and where msk would be in the middle or high end of verbal/social/behavioral issues would be a relief after nine months of being the only autistic kid in an entire school. That turned out not to be the case. This ESY setting with no other autistic kids (though everyone does have an IEP, so I don't think you could call it an inclusion setting) brings great joy, while the respite camp was merely tolerated. Who would have guessed that worksheets and sitting at a desk would win hands down over crafts and swimming?

I've been noticing that at this level of social development, msk needs to be around happy social situations, but is not able (yet?) to be in the middle of these interactions. There's a need to see, hear and occasionally have peers verbally engage, while still being able to move away to "turn down the volume" on the interaction if it gets too intense.

Here's hoping that I haven't spoken too soon and that we keep msk happy and engaged for the rest of the summer, or at least until ESY ends.

More bad news: ESY ends five weeks before school starts, and if two weeks off in June is bad, 5 weeks off in July/Aug is even worse.
Positive spin: Adding structure to my break from work (by which I mean early and often exercise excursions) helps me lose weight and keeps me from being a self-absorbed slug.

Private and home school options

I've been a proponent of public school since about 7th grade. I remember the condescending comments from kids on the other side of the Gilman/Roland Park Public fence in the mid 70's. Then there were clueless questions from private school Girl Scout troop members about race. No n-words were used, but there were clearly bigoted attitudes abounding at Baltimore's more elite private schools (i.e. Gilman, RPCS, Bryn Mawr). At that point a swore I'd never send a kid to a private school, and honestly I've always been very proud of my Baltimore City Public School System education.

This article though makes me wonder a bit. In impoverished neighborhoods in India, private schools provide decent caring education for $1 - $2 / month per child. These are parents who want a good education for their children now and who aren't willing to wait for some monster bureaucracy to figure out how to create a functioning public education system. This isn't just a phenomenon in India - around the globe in developing nations, where there are public school systems lacking discipline, with complacent teachers and classes in which students sit and chat instead of learning (sound familiar?) these type of private schools flourish. And, the students do nearly twice as well as students in public schools.

I think we know that involved and caring parents who value education are a big part of successful educational outcomes. While the idea of using money as a way to make sure your kids don't have to go to school with those kids is abhorrent, what about making sure there is an atmosphere that values education by asking parents to financially support the school? In a way, isn't that what Baltimore's charter schools are doing? The kids a charter schools have parents who care enough about education to look into charter schools. They need to have a some thoughts about education so they can find a school who's philosophy they agree with. They need to sign on to helping out at the school (even if they don't actually put in the hours). In other words, they are required to value and support their child's education - very different from what traditional public schools often get from their parents.

And the same things can be said about homeschooling parents. Clearly they care about education and as they come up with curriculum and lesson plans they are vested in their child's education. Sure, this is not an option for many parents and also for many kids. My special one, for instance must have typical peers in his class for him to flourish. But there are parents and kids that can choose this path.

This all sounds good, but how do we make sure the bar that tries to ensure involved parents doesn't block out kids that we need to be educated. How do we help parents who want better for their kids, but don't know how to accomplish that? Certainly having momentum in the community can pull people along. Does the occasional scholarship to needy kids to Baltimore's private schools help the community, or is it only about the individual child? If it is about the individual child, certainly a parent should make educational choices based on what their kid needs, but should we (as in society) put resources into helping those few children or do we need to find a way to pull in more?

Hard questions, but I think they are helpful to ponder as I try to figure out my own kids different educational paths and I look at the paths that other parents choose.

Grief

I'm not sure it's dead, but something I cared for, InsideEd, is not what it once was when I felt passionately about it. In looking back I've seen the stages of me coming to terms:

Denial - the Sun will see how bad this is and hire Sara back.

Anger - the people who are now posting don't care about City Schools

Depression - that's it, I'm never commenting again, no decent conversations...sad

Bargaining - if I ask nicely maybe they'll at least put some decent post up

Acceptance - whatever, I'll look at the blog, but the odds of me thinking out, composing and posting some of my better writing there on a near constant basis? not going to happen

Perhaps the better analogy is overcoming an addiction. Regardless, I feel I'm ready to move on.