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

 

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.

Baby, I’m Amazed

We’ve been keeping up with the #keystoindependence challenge, and I have to say in the short time we’ve begun, I have already learned so much about my son.

12933009_738098856325388_789378537205830466_nOn day 2, when I was teaching him about fire safety, I was amazed at how little he knew about what to do in a fire. I know that in his nine years in school, they have had various fire safety discussions, assemblies, etc. But The Boy pretty much had no clue about first feeling the door, and crawling to avoid smoke. Then I was blown away again by how quickly he learned it, and retained it. When The Man got home, I asked The Boy to tell him what he learned, and he did. When I asked him to tell Grammy & Poppy what he learned the next day, he did. No repetition was necessary, no flashcards… Just role play. Amazing.

Yesterday, we tackled changing a lightbulb. I showed him where we keep them and how to check to see if it’s a good bulb or not by shaking it. We went to the office and found a lamp that wasn’t being used. I showed him how to unscrew the bulb, and screw the new one in. I asked him to try and he hesitated to touch either bulb because he thought they were hot. I had to convince him that they were both cold – he had just seen me touch both of them, but still thought he might get burned.

I think as parents we assume our kids know a heck of lot more than they actually do. I think some of us still don’t realize we are the adults, and it is our job to adult now, and teach our kids how to do the same. I think all of this is human nature. I think that’s why we need to challenge ourselves a bunch. I thought this month would be about me teaching The Boy necessary skills, and it is. But he is teaching me so much more, as usual. ❤

Keys to Independence Challenge

One of my greatest worries in life is what The Boy will do when I am gone. My goal, and the goal of most special needs parents, is to prepare my son to be the most independent person he can be. We don’t know yet what his living situation will be, nor do we know how and where he will work. But right now, I can prepare him for the basics, and I can do it by introducing him to things adults do every day. Each introduction may or may not be successful, but at least he will have had the experience so that we can build on it in the future.

Here is the Keys to Independence Challenge I mentioned last week.

Keys to Independence Challenge

 

How does this work?

For each day of the month of April, you attempt to introduce your child to the skills above. If they’ve already had experience with it or do it on a regular basis, try switching things up a bit to increase flexibility. If you’d like to document your work with a picture or a status update, you can do so on social media with the hashtag #keystoindependence so people can check it out and get some inspiration.

Is this only for teenagers?

Nope. You can totally do many of these with younger children, with a little forethought. It could just be learning about the skill rather than actually performing it, too.

Is this only for kids with special needs?

Heck no! I know some neurotypical adults who could benefit from this practice! 😉

What if we miss a day (or three or five)?

Hey, life happens. Especially in a special needs home. No worries! You can skip it completely, or come back to it in May, if you’d like.  No one is keeping score.

What if my kiddo doesn’t want to do it?

The Boy is of an age where he relishes the thought of being an adult, and having a little independence.  I’ve prepped him a bit for this, but I have some backup incentives, too. Think about what motivates your kiddo and see if you can’t build that into the challenge.

What if I don’t understand what the day’s task is?

Interpret for yourself, or check my facebook page or social media and search for the #keystoindependence hashtag – you’ll see at least my take on the day’s prompt.  I just opened up an Instagram account for this very purpose @SimpleIJustDo! But there are no right or wrong answers here.

What if I don’t want to post about it or post pictures?

No worries! You do you! But we’d love to hear how it’s going for you! If you do decide to post, just include the #keystoindependence hashtag so we can find you.

If you have more questions, feel free to let me know. I’ll be posting about the challenge on my facebook, twitter, and now instagram accounts if you want to follow. If not, I’ll still be posting about regular stuff, too.

As always, thanks for your support, and here’s to an enriching April!

Keys to Independence: A Challenge

Recently, Grammy & Poppy left town for a few days, and rather than disrupt The Boy’s routine, we planned for him to still go to their home after school to hang out until The Man or I could come to pick him up. In preparation for this, I had a spare key made, thinking I would give it to The Boy, show him how to work the lock, and let him practice for a few days. Except that the key I had made didn’t work, and when I attempted to show him, he got frustrated lightning-quick, and didn’t want to try anymore.

We resolved that situation another way, but it has me thinking about all of the things a 14 year old on the spectrum should be practicing for the day when he has a bit more independence. You see, we are both tired after our long days of work, and I don’t push too much at home, especially during the week. Weekends, I ask a little more, and now and then there are certain chores he helps me do. But I know we could do so much more, and work on that lightning-quick frustration level, too.

Planner nerds and Bullet Journal Junkies often have monthly challenges, and the idea is to take something you’d like to practice, like doodling or hand lettering, and do it each day with a guided prompt. You commit to the challenge, you do the prompts, and you share with a special hashtag on social media (and lots of people miss days, or get “caught up” later if they get behind – no worries). I’ve been thinking about doing an Independence Skills Challenge for the month of April, which also happens to be Autism Awareness Month. There will be a list of “prompts,” or specific independence skills to encourage each day or couple of days. I will share more details next week, and I would love it if you would join us with your own kiddos (on the spectrum or not!), but I’m excited, even if The Boy and I are the only ones doing it.

Keys to Ind Chall

Time to Diversify

Where we live, we have certain stores and activities close by and available to us. We have a local Autism Society Chapter. We have the ocean. We have a Walmart, a Michael’s, and a TJMaxx. We have to drive a little bit to get to a 4-screen movie theater. We have to drive even further for a Target, Old Navy, bowling alley, or an arcade. We have to drive a couple of hours to get to the big city stuff. Like a trampoline park.

IMG_3505We went in May last year, and The Boy had an absolute blast. But he was by himself, and after awhile, you realize it would be much more fun with friends. We talked about inviting his friend C and C’s brother and sister the next time we came, or possibly to celebrate their birthdays, as C and his brother are twins and have their birthday a month before The Boy’s. We talked about it several times with C’s mom, a friend of mine, because we would have to coordinate driving or possibly rent a vehicle big enough for all of us.

A couple of weeks ago, a picture popped up on my facebook feed from C’s mom. They were at the trampoline park. And I was miffed. We happened to be in the same town (two hours from home) that day, and my first thought was that The Boy was left out. It has been one of his most earnest wishes to go there with them, and we got nary a text about the trip?

And I have to admit that I’m still miffed, but I’ve mostly let it go, because it’s life and shit happens, and people aren’t as thoughtful as they could be. But mostly because I realized we need to diversify. The Boy doesn’t have enough friends, and we need to work on that, because depending on one family, one kid, is kind of sad, and rather hopeless when C’s mom is as scattered as she is (it’s not a knock – she really is incredibly scattered and disorganized, and she would be the first to tell you). So we’ll work on this, which is difficult for this introverted mom, but it needs to be done. We can’t live in a vacuum, and The Boy deserves to have some fun with friends.

How I Know

The Boy is what I call not-quite-verbal. He can speak, had years of speech therapy which started with teaching him basic words like “running” and “ball” with flash cards. He enjoys words a great deal, and finds puns and double entendres highly entertaining. One of his obsessions is “ugly sounds” in the band class, and when I remind him that reading The Hunger Games is on our schedule for the evening, he says, “Reed!” back to me, with a perfect imitation of the sound of a reed instrument squeaking. He then explains the joke, that “reed” r-e-e-d is not the same as “read” r-e-a-d, and which one did I mean? Haha.

But ask him what he did in school today? Crickets. Not a peep. Ask him where his field trip is on Friday? Not a word. It’s not as if he doesn’t know. He just cannot form the words. And due to his verbosity at school about his favorite topics, those who know little about him or about autism assume a lot.

Sometimes, they can't tell us what hurts. We just have to notice.He also will never tell me he is experiencing pain, which worries this mama. In fourteen years, The Boy has never once complained of a headache, but he’s probably had one. And he definitely will not tell me if his dad’s absence and lack of communication is causing him pain, either. I have always told The Boy that he can call his dad anytime he likes. He has never taken me up on the offer. He has difficulty talking to him on the phone on the rare occasions that his dad calls him because he has difficulty creating conversation, and his dad doesn’t understand the types of questions to ask.

But I can still tell. When getting dressed, he will switch from the t-shirt I chose to the Steelers t-shirt for the day (his dad is a Steelers fan and got him the shirt one Christmas). He will ask me random questions about what his dad’s cats are doing. Little things that let me know that he’s thinking about and missing his dad.

It’s a different type of listening. More of a “noticing,” but it’s a huge skill set we autism parents develop. We use it to notice the ways our kiddos self-advocate and self-calm, so we can help them replicate the strategy if it works. We use it to notice a budding new interest that we can encourage.We use it, as in this case, to notice when they might be feeling a bit low or lonely and need some extra cuddles and attention. Basic parenting, sure, but supercharged.

Get Out of the Way

As The Boy gets older, I fret about what he should be able to do, what he should learn so he can live as independently as possible. The Man and I know that he will be living with us for quite awhile (and to be truthful, I haven’t even considered him moving out to another, more independent situation yet), but we do a lot for him, and we need to stop.

When The Boy was little, he went to a lady’s house for daycare, and she was amazing. She was one of the kindest people I’ve ever met, and the lessons she taught him as a toddler still stick today. I will often find his socks in his shoes, as he was taught to do there at her house.I forget, sometimes, that I can teach those lessons that need to be taught, and they will stick because he is more of a sponge than I give him credit for.

It's not just laundryA couple of years ago, in an attempt to get him to do some chores, I tried to teach him how to fold and put away laundry. I still have him put it away for me (sometimes), but I do most of the folding. The other day, he happened to come into the living room the evening I was folding, and for some reason, The Man had turned Spongebob on – a rare occurrence. The Boy plopped on the couch, and I started handing him socks to match up. He not only matched them up, but balled them up the way I had taught him to do it. No prompting, nothing. He just did it, and with no complaint.

I must, must, must remember to get out of my own way, and provide him with these opportunities to practice and learn, and even allow him to help me a little. He just keeps getting older, darn him, and if I just let go a little, he will surprise me. I just know it.