Another “Doh!” Moment

I don’t know if any other parents of special needs kids have “Doh!” moments, but I do on a regular basis. I don’t know if I’m just not paying attention, or what, but often something that has been staring at me in the face for awhile finally dawns on me, and I feel particularly dense.

Since The Boy was a toddler, we realized he has some sensory issues. In facet, I was researching and learning about sensory processing disorder before I even thought autism was a possibility. Many kids are hyper-sensitive to sensory stimulation – too much noise, too much touch, too much everything. But The Boy was just the opposite. He loved to be crushed in great big hugs, and steamrolled, and tickled, and be in the water for great lengths of time. He needed more sensory input to regulate himself. As he got older, a few variations were thrown in, like aversion to fire drills and loud noises in general, which would be classified as hypersensitive, while still maintaining hypo-sensitivity to other sensations.

pexels-photoFast forward to The Man entering our lives, and me noticing he doesn’t like to hold hands much. Or too much touching in general. Of course, there are times and places… ahem, but in general, if my legs are on his lap too long, he’ll have to get up and move, or if we do hold hands, it will not last longer than 20 seconds. I’ll admit it’s been a little tough for a touchy-feely girl like me, who was raised on hugging and cuddling, and all of that. It wasn’t until last night when I kissed him on his forehead and he almost flinched that the tumblers fell into place. He is probably affected by SPD, on the hypersensitive end.

He and I both have always suspected he may have ADHD – always on the go, doesn’t like to sit and relax, periods of hyper-focus (doesn’t like to be interrupted), etc. and sensory processing disorder is much more likely to be co-morbid with something else like ADHD or autism then as a stand-alone issue.

I’m not trying to diagnose him, believe me. But it helps me understand his responses without being hurt by them, and changes my perspective a bit, which can only help. And yet again, my experiences in life seem to be acutely tailored to the challenges I face. I’m just glad my brain can work this stuff out, even if it isn’t always too quick on the uptake.

 

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New Home Soon

The Man is making great progress with our new house. The plumbing and electric are in, and so is the septic system. We are awaiting inspections today to proceed with insulation, heating and cooling, and drywall. The roof is complete, and the siding is half done, thanks to The Man himself.

The Boy and I visit every weekend and some weeknights. He walks down the cul-de-sac that is one street over, and recently we brought his bike over to the new house so he can ride it there, as well (as he really has no space to ride it at our current house). We have met and befriended our closest neighbors, both of which have dogs, and The Boy loves to visit them. When we visited the site this past weekend, I couldn’t get him to leave.

We’ve also begun talking about his room and what he would like that to look like (blue walls with white puffy clouds, thankyouverymuch). We have begun stopping at a nearby convenience store run and owned by some great people who appreciate The Boy and his quirks. It even has a retro arcade so he can play his favorite games for a quarter.

The time it has taken to build this house ourselves has given The Boy ample time to adjust to the idea of living there, and become accustomed to the surroundings. He is now excited about the move, and this process has been ideal for allowing him time and experience to accept the change.

We can’t wait.

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Spring Break is Here. Woo Hoo.

Everyone loves vacation, right? Everyone loves a week off of school!

Nope.

The Boy in recent years has looked more forward to it, I’ll admit. But the reality is that the slightest changes in routine throw us all off, and Spring Break is a million tiny changes in our routine and a lot of big ones. Normally, I wake up at 6am to do yoga. Apparently the act of walking down the hall at that time of the morning, gives The Boy some sort of pre-wake up call that I wasn’t aware of. Because apparently, when he is on Spring Break, and does not need to leave the house as early, I am still required to wake up at 6am. Grrr.

And someone (I shall not name names) ate two packages of pop tarts (!), at some point this weekend (we usually get breakfast elsewhere), which leaves one to last us until Wednesday. That same someone complained to Grammy that he had not been given breakfast…

That same someone also required umpteen reminders yesterday to get out of bed and get ready to leave. He waited until the last minute, couldn’t find his headphones, and got upset… sigh… (later found under the bed at Grammy’s, just like everything else that gets lost).

He also thinks he can stay up all hours of the night watching movies in his room.

I’m going to wake him up in 14 minutes. That will be 15 minutes earlier than yesterday. We shall see if allowing him more time to procrastinate helps the situation. But I’m pretty sure the only thing that will help this situation is sending him back to school

Spring Break in an Autism Household looks NOTHING like this...

 

This Battle’s Not for Us

I was thankful for one of The Boy’s former teachers last week. She’s the one they moved to a different school this year, and we’ve missed her sorely.It’s funny to think that when we wanted to move him to his current school, she was not in favor and didn’t think he was right for the program, and she is now one of his biggest advocates.

I voiced all of my concerns over this Occupational Course of Study (OCS) with her – that he wouldn’t be in the least restrictive environment (LRE), he wouldn’t have access to his general ed peers, and he may not be able to take band.

She talked me off the ledge. She made me see some things from a different perspective, and made me realize that if I have to choose, this program could work for The Boy. And that he has every right to be in band, although logistically, he may only be able to be in it for one semester.

And I can live with that, as long as they make the “occupational” part of it something in which The Boy has interest. He won’t be folding towels at the hospital if I can help it.

But that’s not what I’m telling the district. I had contacted the director of special ed, as she had been an ally in getting The Boy his current placement, and had earned my respect. I wanted a meeting, but she said she would call me instead due to expediency. Except that all she wanted to do was sell me the OCS program, and I wasn’t going to let her. I wanted her to explain how it was legal, without placing kids in their LRE. After she figured out I wasn’t going to be sold, she told me she would set up a meeting with the transition coordinator (with whom I already met and wasn’t all that impressed) and the occupational coordinator. She told me she would get back to me the following week. That was last week, and she didn’t.

When I emailed her again yesterday, she said that the transition coordinator had been waiting for my call to answer my questions… What?

I sent an email – you know the one. The one I crafted for an hour, making sure to sprinkle acronym bombs all over the place so she would remember that I wasn’t some ignorant parent who didn’t know anything about student rights or IDEA.

Lo and behold, she was able to set up a meeting after all. For tomorrow. Fancy that!

But, I’ll be honest. This meeting isn’t really for us. I don’t expect them to re-design the entire high school setup for us, because they won’t. I don’t expect them to wave a magic wand and put him in band all year, because they won’t. I don’t expect to hear much but placating platitudes. But I want them to know that I know. And I want them to know that I’m not going away, so that if something isn’t working, I’ll be back. And I want them to know that there is a whole host of kids coming up through their schools, and that if I know that what they’re doing is illegal, they better damn well know that those kids’ parents will know it too. And they better think about just what they are going to do about that.

high school

 

Slow Down

Yesterday, I had a real-live (paid) day off. It was fantastic. After the boys left I went back to bed for about a half hour, not to sleep, but just because I could. Then I got up and got dressed and headed to Panera to work on my novel revisions. I bought a bagel with cream cheese and a hot tea, and went to work. At about eleven, The Man called because we needed to pick out fixtures for the showers at the new house. After that was done, I came back home to a silent house, cleared off the dining table, and went to work again. It was glorious. I’m sorry there was no post yesterday, but sometimes a woman’s gotta do what a woman’s gotta do.

The reason I had the day off was because CPAs traditionally take the day after the tax deadline off. I didn’t know this until I started working there, but it’s much deserved. The past three weeks or so have been off-the-rails busy, and the CPAs work much harder and even longer hours than I do.

During that especially busy season, I have realized that I attempt to do almost everything fast. Every task is a hurried rush, I type fast, I drive (slower than I used to – it’s the South, but still) fast, and even at home, I eat too fast.  And I believe this started when I was teaching school, where you literally only had an hour to do all of your planning and prep, and only 25 minutes for lunch. Then the awful job at the boat place reinforced that with answering as many calls as you could, doing way too many tasks simultaneously, and not even taking a lunch break.

These rushing behaviors are leftover, but ingrained. I have decided to consciously slow down. Even with the tax deadline looming, I knew everything would get done, and I down-shifted my speed to a more sane level. It will take some work, but  I think it will be worth it in the end, if only for my health and well being.

My new mantra: “Be the sloth…”

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Summer Camp?

Our state and local chapters of the Autism Society held a meeting last night regarding all of the new and wonderful programming they are bringing to our area, focusing primarily on their summer day camp at a new-to-us facility that has been remodeled and improved. I was excited to get the information, find out about registration and see how much it would cost. While The Boy has enjoyed the summer program he has attended the past few years, it wasn’t quite what he needed, although something was better than nothing. And if the school district claims he doesn’t qualify for ESY, it was our only alternative.

This new program will be for six weeks (six weeks!), Monday through Friday (all week!), from 9am to 5pm (amazing!). And it will be free… Wait, what?

And there are only 30 slots.

Wait, what?

They went on to explain that first priority would be given to kids who do not receive any state services (pretty much everyone I know because you have to sacrifice your first born to get any kind of services around here), and to those who can attend the whole 6 weeks. OK, and do you not realize you are going to have hundreds of kids who fit that description? How will you decide among them?

Then they said it was open to kids with all diagnoses, and even siblings if there was room. And then they said it would be open to anyone in the area, not just people in our county…

A little bit of market research would have been appropriate here. I can’t believe they think that so few would be interested in this. I guess I’ll be up at Midnight on May 1, hoping the site doesn’t crash and trying to get registered before everyone else in the tri-county area…

hanging out

 

Anxiety about the Unkown

When I was about 10, my parents and I watched “Iceman,” a movie about a neanderthal man found in ice and resuscitated. The question I had for my mom at the end was if it was ever possible for us to return to that state of being – unfamiliar with the technology of the day, and possessing only the most meager of skills. She answered that it was possible in the event of a nuclear war (this was in the mid-80s). Unbeknownst to her, I began to panic about the possibility of nuclear war, and the media coverage of the cold war only fed my frenzy to the point that I was afraid when I heard planes flying overhead, thinking it was the Russians about to drop the bomb.

My dad finally talked me off that ledge (he really would have been a fantastic teacher or counselor) one night, explaining to me that my fears were not founded in logic, and that I was safe.

I went about my life, and I was fine.

But every once in awhile, I get gripped by a current worry, and it turns into an irrational fixation. The internet is a wonderful tool and the most fantastic invention of our time, but during these moments, it is my worst enemy. Rather than trusting my own intuition, experience, and intelligence, I go searching for an answer from strangers who don’t know me or my situation. The answer must be out there, I tell myself.

how I worryAnd so, with my child’s future seemingly in the balance, and a boy who looked at me with panic in his eyes last night, asking “Do I have to quit band?” this is where I am today. In front of the computer, searching for answers, for someone to tell me the right thing to do. Do I choose one of the pre-existing paths for The Boy to follow through high school, possibly denying him access to college or, on the other hand, subjecting him to years of struggle and stress in general ed classes with little support? Do I try to blaze a new trail and fight for a hybrid that is legally his right (with little hope of succeeding)? Do I fight for  him to be in marching band when I’m not sure whether his love for it is more obsession or genuine interest? Do I just pull him out and homeschool (somehow)?

For my sake, I’m putting it out of my mind for a bit, waiting to hear when the meeting with the director of special ed will occur, and asking for the IEP to be postponed at least a week. Coping through distraction and delay. :/

 

An Autism Registry?

While perusing my usual Facebook stream, I came across an article about two brothers on the spectrum who created an autism registry and are working to make it live in their state with the aim of helping law enforcement understand when a person they need to speak with has autism.

While I applaud the ingenuity and self-advocacy of the brothers, and understand the intent, this still strikes me as the wrong way to go. Unfortunately, many law enforcement personnel in this country do not yet have CIT training (crisis intervention training), which is the basic understanding that people they deal with may have mental health or neurological issues, and need to be approached in a different fashion. It’s a very real problem with those on the spectrum ending up arrested for refusing to identify themselves or lashing out at officers. This was a major reason we spoke with the sheriff’s department ourselves when the MHP owner reported The Boy to them for things he did not do. The Boy got to see the inside of the Chief Deputy’s vehicle and now he knows him by name and sight, and the Chief Deputy has a relationship with my child so if there ever is a situation, he will hopefully be seen as a person with special needs rather than a perp.

A registry has scary connotations, and possible unintended consequences. My child is not a danger to others, which is what most registries are used for. Registries are also used for public reference, like the sex offender registry. Will people be able to access this registry so that they can choose whether or not to purchase a home near a child with autism?

The premise of a registry is that the people on it are different and need to be classified. While I accept that those on the spectrum may not be neurotypical, they are now 1 in 68 of us – is that really so different?

And finally, I keep coming back to this question in my current battles with the schools. Would you do the same to a child with cerebral palsy? juvenile diabetes? Down’s Syndrome?

Rather than settle for a second-best precaution, I think we need to spend more time and effort on getting all law enforcement officers CIT training. If the premise in education is that any intervention that helps a student with an IEP could help (and probably will help) children without one, shouldn’t that premise extend to law enforcement? That any intervention extended to a person with special needs would benefit a person without them? If we approach each other as people first, many of these issues would not exist.

So, no registry for us, thankyouverymuch. We will stick with building personal relationships within our community. You?

Orientation

high schoolFor most, high school orientation is an exciting time. I watched the 8th graders sit quietly and listen to the high school administration and teachers speak in the auditorium, and afterwards wander the halls, almost running at times they were so excited to see their friends and figure out how the building was laid out. During the presentation they were told what classes they would have to take as a freshman, and that they may not got the electives they want because they build the schedule from seniors down. They were told about foreign language, core classes, Career and Technical Ed classes, and counseling services.

Not once did they mention IEPs or 504s.

Few teachers were there, and only two out of the three counselors for the entire 900-student population were there. It was not a night designed to speak to teachers, or counselors, even though they made themselves available in the hallway after the presentation.

I spoke to the band director who had been a no-show for a meeting the previous day during my lunch period (drove 20 minutes to the school, waited 20 minutes while he was in a meeting with the principal, drove 20 minutes back to work). He took the wind out of my sails by saying The Boy may be able to participate in band second semester if they add a second, more remedial band like they hope to, but that was pretty much our only option at this point. This Boy who adores band, probably has perfect pitch, and wants to be a band director…

I attempted to speak to the counselor in the hallway to find out just how all of this scheduling would happen with us, but another parent cut right in front of me, and by that time I was frustrated, tired, and hungry so we walked away, and I allowed The Boy one more stop in our wandering tour before leaving.

A registration form came home two days ago, and since, again, I had thought this would be handled by the IEP, I emailed The Boy’s special ed teacher, the one who coordinates his program and the IEP meetings. She responded that she is on indefinite medical leave and had no idea, maybe I should email Mrs. X…

I asked The Boy how long his teacher had been gone. “Since last week,” he said.

As a result of all of this, I am disappointed, anxious, angry, and frustrated. And my attempt to meet with the director of special education was met with a promise of a phone call. I’m afraid if she does follow through with the phone call today, she may get an earful.

Special Education should not be an afterthought, an attempt to comply with the law. Special Education should not be something separate that isn’t talked about. Special Education should not be a reason to exclude kids.

And I should not have to pull teeth to find out information about my child’s educational experiences and program in the coming year.

This is unacceptable.

Evolution of a Stepdad

The Man and I have been married for almost three years, and together for about six and a half. He’s been involved in The Boy’s life since he was nine years old. As I’ve mentioned before, he was the one to teach him how to ride a bike, he’s taught him to surf, how to operate the riding lawnmower, and countless other life lessons (including using the plunger the other night!). The ex was around until The Boy was six and a half. Suffice it to say that The Man has been more of a dad to The Boy in his memory.

When we first married, The Man was quick to classify his relationship to The Boy. “That’s my stepson,” he’d say when we were introduced to someone new. It never hurt me or The Boy to be introduced in this way, but it was something I noticed. You see, The Man has a grown daughter he doesn’t see much. And she was very young when he and her mom split up. Then she moved six hours away, but he made the effort to be in her life, made the drive to see her every other weekend, took her on trips, chaperoned her school trip to Washington DC, brought her to the beach in the summer, paid for much of her college and her car, and actually paid more than what he was asked in child support. He sees the other side of the coin, and always respected the fact that the ex was and is The Boy’s dad. He never wanted to replace him.

But over the years, that line has softened. He has grown protective of our boy. He is more comfortable voicing his opinions on his upbringing (while respecting the fact that I have the final say). The two of them have begun to have their own private jokes and rituals. And he often refers to him as “our son,” in casual conversation with others who may not know the whole situation. And I notice. ❤

like riding a bike