Reprieve

Our meeting scheduled for today will not be happening.

IEP documentationI was feeling very overwhelmed, and distrustful — just what was the district doing by inviting 10 district personnel?  What is their goal, here?  Were they trying to intimidate me?  Through some calls to friends and local resources, I was directed to call the state department of ed, because they actually have a department that acts as a watchdog for parents and students, and ensures that school districts are following the proper procedures.  Come to find out, our district people had not followed the proper procedures, so I was allowed to request that the meeting be rescheduled.  And I did.

It may only be delaying the inevitable, but one of the things that they were supposed to do (and didn’t) was to provide me with a list of people who have been invited, as well as an agenda, of sorts — a statement of their intention for the meeting.  The delay will also allow me to marshal my own troops, which I didn’t really have time to do for the originally scheduled meeting.

I can’t tell you the relief I felt when I spoke with the incredibly supportive lady from the state.  I was really struggling to hold myself together that morning.  I was beginning to feel helpless and hopeless.  Fighting the system is extremely difficult, and I was feeling so alone.  But with all of the people I’ve spoken to in the last couple of days, I feel like I’m beginning to have a very real support network of people who can help me in my quest to get the best for my boy.

Tonight I can breathe.  Tonight I can get some sleep.  Tonight I can hope.

Thoughts on Homeschooling from a Former Public School Teacher

There has been a recent trend, especially for those on the spectrum, to consider homeschooling and online schooling as an alternative to public school.  For the very reason that teachers make mistakes and don’t leave their personal lives at home is why real-live teachers will never and should never be replaced by online classes.  One of the lasting lessons that teaching for almost 20 years taught me was that relationships were everything.  If the teacher and student can build a relationship, the chances for successful learning (by both parties) grows exponentially.  And this is especially true in the case of students with special needs.

However, homeschooling is a different story.

I was against homeschooling for most of my career.  I saw the effects of inconsistent homeschooling on a daily basis.  Mom would get upset at the school for something, pull her kid out, “homeschool” for awhile until she got tired of it, and return him back to public school, months behind, and a behavior problem to boot because he’d been away from rules and routine for so long.  My ex-sister-in-law was a classic example of a mother who “homeschooled” – Her 12 kids “taught” each other with the end result being two boys nearing the age of 20, starting to work as carpenters with their father, and neither of whom knew the correct answer to 8×7…

But…

English: .. Dansk: Naturhistorisk Privatunderv...

I have changed my tune pretty quickly.  Over the past few years, I have encountered people who have the intelligence and organization to handle it, as well as compelling reasons to homeschool.  I was still stuck on the “socialization” issue – how would kids who homeschooled have any social skills if they only interacted with their siblings and parents all day long?  But, I have found that Necessity really is the Mother of Invention, and due to the very real needs of kids with autism and other disorders that aren’t being met by the public schools, some very sophisticated networks exist in our region for those who homeschool.  Co-ops have been formed so that homeschooled kids can get that socialization, participate in field trips, and even have co-curricular activities like band.

And when public schools are increasingly heading toward a business mentality, and one-size-fits-all curriculum, I think this trend will only increase.  I never would have even considered it for my own son, but I look at my skills, and what passes for education here, and let’s just say I am keeping my options open.

On Yelling

I follow a few autism-related facebook pages, and on several, the administrators post anonymous questions from followers so that others may offer advice.  There was one such posting this morning from a clearly frustrated mother who found herself yelling at her son, and feeling unable to handle his behavior.

Sometimes I yell at myself.

Sometimes I yell at myself – ★ spunkinator

I’ve been there, my family has been there, the ex has been there, and The Man has been there.  We have all yelled at The Boy for one reason or another.  Luckily, there is that voice inside of us that immediately tells us that it was unnecessary and the incorrect thing to do, and we tend to go back, make amends and start over.  I think the person who posted the question has that sense of remorse, otherwise she wouldn’t have posted.  And I think every person touched by autism can understand her feeling of helplessness.

What has helped me (and this is not to say that I don’t yell anymore, but it’s pretty rare), has been to really try to see the world as The Boy sees it, understand the frustrations he is dealing with, and remember that behavior is communication for our ASD kids.  If he starts to fuss about something, or refusing to do something, I immediately try to put myself in his place and review what is really bothering him – many times it’s something sensory, some change to the routine, no physical activity, or the fact that he hasn’t had any time to revel in his obsessions lately.  It’s not necessarily whatever he is verbalizing.

And reading books and blogs written by people on the spectrum can provide great insight and spectacular “A-Ha!” moments.  It’s amazing how differently you can see your child sometimes after reading something that just clicks.

I think a lot of people get hung up on never quite understanding, and they develop their own sense of what these kids should be.  “He should know better.”  But I don’t dwell on the “shoulds” –  I just keep analyzing my own kid, and his communication, either verbal or behavior, to try to understand him as he is.

Labels: Ain’t Nothing Wrong With Being Special

I saw a post on Facebook the other day with a picture of a young boy, and the words, “I have a disability. I need love. I need to play. I need friends. I need an education. My needs aren’t ‘SPECIAL.'”  It originally came from the Wyoming Governor’s Council on Developmental Disabilities, and on their main page, the group describes their “I’m Not Special” campaign, relating use of the word, “Special” to the use of the r-word, citing that many in the DD/ID community are offended by the term “special”.  The page goes on to say, “The label of ‘special’ in reference to a person with a disability does not convey equality. Expectations for success should not be underestimated to accommodate the ‘special’ label that is associated with people with disabilities.”

A picture of a rubber duck wearing a nametag, ...

Feel free to chime in below, but here are my thoughts.  The “I’m not special” campaign??  Are you kidding me?  Yes, THAT’S what I want to tell my son.  “YOU are NOT special, suck it up.  You are just like everyone else, and I expect you to do the same as everyone else with no support.  Stop using your autism as an excuse.”  That’s what the name of that campaign says to me.  Here’s what’s true: one of the tenets of special education, and educational law in this country is that you need to throw out the word “equal” and replace it with the word “equitable”.  Because the reality is that some people need more help, than others, and some kids cost the school district more than others – they need to have equal access to the curriculum, so the school has to take an equitable approach to ensure that.

And for the record, I don’t like the word “disability”, but I haven’t formed a task-force and anti-disability campaign.  My son has plenty of abilities, and has deficits in certain other areas, but he is not dis-abled.

The truth of this is that our kids with special needs do have special needs.  They are not typical children who can bathe/dress/feed themselves, or pay attention in class themselves, or do homework by themselves.  My child needs supports to be able to show us his abilities in certain areas.  He is able, but needs some help.  He is special, much like any child is.  And he is equal in worth to anyone else.  He can be all of those things – they are not mutually exclusive.

I also saw this pretty neat news story on Facebook.  That little girl’s flute sounds the same as all the other flutes, but it works differently, thanks to the special design of Mr. Woody.  Her flute is not less, but it is special.

An Awful Weight Lifted

Over the past month, I’ve become quite close, almost best friends, with a feeling I’ve never had to feel before. Because I was always a teacher, and had been for years before The Boy was born, and because (at least where and when I taught) teachers usually had a fairly decent benefits package and fairly decent pay, I didn’t ever carry the heavy weight of worry about providing for my child.

English: Heavy Burden

I know how lucky I was, and I knew it then, but I did work hard for that security, and we weren’t always absolutely free from worry on that front. With the ex doing our finances, there was always worry, but there was always the reassurance of another paycheck on the horizon, even if it was already spent. There was also a time when our district slashed our benefits, and all of a sudden, our all-important speech and occupational therapies were no longer covered. It was a struggle, but we managed. We only got sued by a hospital once, so victory for us, I s’pose.

Today, as I walked out of the Department of Social Services office, where a kind lady had explained to me, “Yes, those mailings you received do mean that your son has full Medicaid coverage,” I took one of the deepest breaths I have taken in months.

No matter what happens, he has a roof over his head, and the medical care he needs.

And now, I don’t have to spend any more emotional energy on that heavy worry, and can concentrate on finding a decent job.

Non-Warrior Pose

I’ve been in Warrior Mom mode since yesterday, sending emails to the school, rapid-fire (pew, pew, pew!), making phone calls to the county social services department to make sense of the mailings they sent in the wrong order, spending over an hour to modify an assignment for The Boy to do last night, and making an executive decision to skip Tuba practice as he fell asleep while doing said assignment.

And then the special soup I bought for dinner was gross, so I basically had cheese and crackers for my evening meal.  And I had to wait for the boys to use the microwave for their own dinners, and mine was last and turned out to be yucky anyway.

And the ex emailed with more promises to call later this week (yeah, right).

And then the cop directing traffic this morning looked at me funny…

and I burst into tears.

I sent another email this morning, and had planned to do some medical legwork since I didn’t get anyone from the county to answer my questions yesterday.  But I’m thinking I may just not.

I may just take a day to not fight the world.

I may do some yoga, may attempt to draw some more Zentangles.

I think I need to heed my own tears, spend some time in the sun, stop communicating with the sources of my frustrations, breathe, cry if necessary, but slow down and take a day with no anger or fear guiding my actions.

Sounds good, doesn’t it?

Golden Gate Tea Garden

Practical Tips for Email Documentation: IEPs and Dealing with the School

Because I am new-but-not-really-new to having to fight for my son’s rights, I have an interesting learning curve.  I am very aware of the law, but not as well versed in the day-to-day practices that are highly recommended for those of us battling the schools.  It’s not dissimilar to having a less-than-amicable divorce, especially because documentation is so important.

I have always been a proponent of email, in large part because it is an easy way to establish a paper trail.  As such, I have been emailing The Boy’s teachers and administrators since the beginning of the school year with my concerns and requests.  As we have gone further into the school year, and I have realized that things are not running as smoothly as I had hoped, I am glad I have the emails as documentation, but have found that just leaving them in my inbox is not the best organizational practice, and it would be cumbersome to try to sort, save, and/or print just the relevant correspondence.

Through trial and error, I have found a great way to organize these emails with the idea of using them for documentation in the IEP process, and possible mediation process if necessary later on.  I hope we don’t have to go that far, but it is much better to be prepared and do the legwork now than to have to go back through several month’s worth of emails.

circlesFirst of all, I highly recommend using a gmail account for your correspondence with the schools, because it has capabilities that other email accounts don’t have.  I have put all of the teachers and administrators in a “circle” within my gmail account, labeled “The Boy’s School”.  I can click on that “circle” and view all of the emails from those people without the distractions of other, unrelated emails in the way.

Secondly, I have an existing Evernote account.  You can download a free desktop version, which is all I’ve ever used, and although I don’t use it often, it has some very neat capabilities.  If you aren’t familiar, you can check it out here.  It also has an app for smartphones, which can sync with your desktop app.  Evernote is like a huge notebook where you can store and organize stuff – stuff as small as an idea, and stuff as large as a document.  One of the great things about Evernote, that we will use here, is that you can create notes by emailing whatever you’d like to your Evernote account – it sets up a specific-to-you email for this purpose.

After you have a gmail account and an Evernote account, you can then select all of the school email addresses in your gmail account and apply a filter, forwarding copies of all of the emails from people in your school circle to your Evernote account (using that Evernote-specific email), thereby creating “notes” out of all correspondence with all of your child’s teachers and administrators. To do this, select all of the messages within a “circle”, click on the “more” button, and select “filter messages like these”.  Follow the directions from there, plugging in your specific-to-you Evernote email address.  It is important to note that the filter will only forward the emails that are received after the filter has been applied – you will have to forward each email that has already been received, yourself.

Evernote

You can also save texts to Evernote by either using an app that will do this for you (there are several), or by taking screenshots of the texts on your phone (do this on an iPhone by pressing the home and power button simultaneously), and emailing them to your Evernote-specific email.  If you have the smartphone Evernote app, it’s even simpler: After you have taken screenshots of the texts, you can open your Evernote app, press the “+” button to add a note, press on the camera icon, select “choose existing” which will take you to your camera roll, and you can select the screenshot you just took of the text from your camera roll.

You can even save voicemails to Evernote (or recordings of meetings!), if you have recording capabilities on your phone/computer, and can save them as an mp3 file.

Finally, you can merge notes (say all of the emails from his social studies teacher, so you can prove a pattern of disregard for the modifications she needs to be making for your son… for example…), and/or you can create a pdf of the selected note(s) by choosing “print” and instead, saving as a pdf (click on the radio button on the lower left hand corner in the print pop-up screen).

It helps to go into all of your notes, and change the date to the actual date of the correspondence, rather than the date you entered it into Evernote – you can do this by clicking on the “i” icon.  You may also want to tag your newly entered notes with the last name of those involved.  This is not necessary with emails, as Evernote will search the emails for the relevant names, but it is another layer of organization.

These tips can also be used by teachers to keep track of correspondence with specific parents, or by anyone who needs to organize emails, texts, and the like from specific people!

How Our Lives Have Changed: 3 Weeks

We’ve been in our new state, our new town, our new home for a little over three weeks.  In that time, we have moved in, started summer camp, and gotten married.  And we have settled in for the most part.  The Boy rebelled a bit for awhile when his camp turned out not to be exactly like his usual ESY experience, but he found some activities to love, and now looks forward to it each day.  I am desperately trying to find some form of employment, and unpacking and getting the house in order in the meantime, checking things off of my to-do list which has grown to several legal pad pages.  I have also been battling government offices to get my name changed, and to just get a driver’s license.  These things really shouldn’t be so hard when you are clearly a law-abiding citizen, but I digress…

The Ocean is Just Down the RoadOne of the most pleasant changes in our lives has been the proximity to Grammy and Poppy.  Besides being fabulous grandparents, they are also awesome parents, and great friends.  It has been exceptionally nice to have a girl’s afternoon with my mom here and there, and The Boy has enjoyed hanging out at their place in the afternoons, after camp.  As a former single mom who was never able to leave the house alone without the aid of a babysitter (and the requisite money involved), The Boy’s regular Saturday Night Sleepover at Grammy’s still brings tears to my eyes because I am just so grateful.  Every couple needs time alone, and this weekly respite is already oh-so-special.

The flip-side of this is that there are a lot more people in our lives on a daily basis, and this has taken a bit of getting used to.  We have to check with people now before we make decisions, and more compromise and flexibility are necessary every day.  This isn’t a bad thing, and it isn’t unexpected, but it is an adjustment.

We miss our friends, and I miss having adults to talk to, but this is no different from any other summer, for me.  I’m starting to have a hard time with not having something to do each day — I’m one of those people that needs to feel like I’m accomplishing something, and organizing my desk and hanging a few pictures just don’t qualify as “accomplishments”.  I’m trying to practice patience and perseverance in the job search.  Trying.

All in all, we are very happy.  The Boy is counting down the days until school starts, and is very excited.  I’m loving the summer sun and heat, reveling in the proximity of my loved ones, and enjoying being a newlywed.

Cheers! 😀

Progress That Doesn’t Look Like Progress

Wow, what a mess we have here.  Four days left until we pick up the truck and begin to vacate this house!  And the place is messa wreck – no visible counter space, the contents of our medicine cabinet on the floor in the living room, boxes obscuring every view in the house… But I’m keeping my panic at bay, because as a special needs mom, I know that progress doesn’t always look like progress!

The Boy is holding up well, being a real trooper.  I have shared our “moving book” with him, and he seems to be doing pretty well, even with the house in so much upheaval, even with the end of the school year upon us.  Today we talked about the lady with the son who also loves Cars who will be coming to pick up his Cars bed this week, and he was OK.  We talked about how he could sleep on his mattress on the floor until we head south, and he was accepting and conversational… he was fine!

My parents have been here for four days already, helping me in numerous ways, as they always do when life throws me big change.  And together, we’re chipping away at what needs to be done.

So, while I can’t exactly walk across the floor without impediment, and while I’m sleeping on a crash pad in the basement, and even though there is much yet to be done, we’re making progress.  And that’s more than OK!

Nothing’s Impossible

The Single Mothers who have Children with Autism facebook page recently posted a reminder that taking a break from your routine and taking care of yourself is important.  Yet many commenters responded bitterly that it just wasn’t possible, and people who say that mean well, but that’s the last thing single moms need to hear.

I disagree.

Nothing's Impossible

Nothing’s Impossible

People, if something isn’t going right in your life, you have to make the change happen.  Do you think a respite fairy is going to land on your head and grant you three Friday evenings to yourself?  I have no nuclear family in the area, yet I am able to take an evening off every once in awhile.  Granted, I make a decent wage, and I get that it can be extremely hard financially – money was extremely tight after my divorce, because I was digging myself out of debt.  I know that feeling.  But there are ways, and you have to find them!  Insisting that it’s impossible and defeating yourself before you even start will turn you bitter, and as a result, everyone around you, including your children will suffer.  I know people like this.  Their negativity is like a virus.  And when they don’t take time for themselves, they are more apt to run out of patience and snap at their kids, become exhausted and ill, and it spirals downward from there.

Some ideas:

  • A break from routine is not necessarily a break from your child(ren).  I know routines are the safety zone for kids with autism, but I have written before about how amazing it was to stop and get myself a sweet tea after a meltdown-y morning – it was FANTASTIC, and it had a lasting effect.  Something small like that is a great way to start treating yourself kindly.  Lord knows our kids won’t always show us the same kindness!
  • I am lucky that my child enjoys latchkey – it is relatively inexpensive through the school, and gives me a much needed break from ALL kids after work, because he doesn’t like to be picked up until 5pm.  I don’t pay any extra for keeping him there until 5pm, and it is an excellent opportunity to unwind a bit before the evening routine begins.
  • Groups like The ARC often have respite grants for members, and membership dues are often inexpensive or even free.  This is a GREAT resource that is oftentimes underutilized, which means you have a great chance of getting some money to help defray the cost of even a family member providing some babysitting for you.
  • Have a friend with a special needs child?  Share the babysitting costs, OR offer to watch the kids for an hour, if she’ll take them next time.
  • Feel like your calendar is too full to take a moment for yourself?  Pencil yourself in.  You need to be a priority in your own life.  There’s no excuse for that.
  • Can’t find quality help?  Ask at your school – sometimes the parapros (or aides) need some extra cash, and already have a relationship with your child.  Maybe your local high school has some National Honor Society students interested in becoming special education teachers (and they probably need service hours and would do it for free).
  • Sometimes just having an extra pair of eyes in the house while you do chores (or sleep!) can be a weight off your shoulders.  Again – get a high school student to come in and be your eyes and ears (or entertainment for the kiddos) while you get stuff done.  The more time they spend with your kids, the more they will learn about what to do – special needs babysitters in training!
  • Bartering is getting big.  Is there something you could do for someone in return for them watching your kiddos for a bit?  Bake some banana bread?  Fix a networking glitch?  Give someone swimming lessons?

If none of these ideas will work for you, I feel for you.  I completely understand that some children’s needs are severe, meaning breaks a just going to be harder to come by.  But you can’t stop trying.  You have to find a way.  We special needs parents are in extreme danger of burnout and battle fatigue, and the very reasons many moms and dads say they “just can’t take a break” are the same exact reasons they must.  Our children need us at our best, so we can handle the worst for a long time to come.