Tag Archives: Special Needs

Nothing’s Impossible

Posted on by

2

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.

Got Your Summer Booked Yet?

Posted on by

1

One of the biggest anxieties The Boy has about moving is that he will miss his ESY program (that’s Extended School Year, if you weren’t aware).  ESY is a service that public schools provide to children who would otherwise take a drastic step backward in their academic and behavioral progress if they did not continue a type of school structure through the summer months.  Many districts keep this service on the down-low because if parents don’t know about it, and don’t ask about it, and they don’t happen to mention it at the IEP, they don’t have to have a program and pay for it.  I know districts that do this on purpose, intimately. Some districts even go so far as to tell parents that their children don’t need it, just so that they don’t have to have a program…

But The Boy’s district has a fabulous program, although it has scaled back even in the five years The Boy has attended, I’m assuming due to funding cuts.  In any case, he digs it.  Looks forward to it, and collects the T-shirts (even from years before he attended, thanks to an awesome gift from his amazing ASD teacher).  It’s like really, really laid back school.  But it’s structure, and school-like, so The Boy can’t get enough.

The Pink Shirt

Now, when we move, from what I can tell, there is nothing like that where we will be.  Plan B is a summer program offered either by the Boys and Girls Club or the City Parks and Rec department.  If it isn’t Boy-friendly (i.e. they’re not used to having special needs kids participate…), it soon will be. I can guarantee that.

I just hope we can get him in a daily program with enough structure that he will enjoy it, and maybe meet some new friends.  It breaks my heart that he won’t be able to attend ESY, but I hope with a little planning and forethought, we can find him the next best thing.

Wish us luck!

We’re Trying an Old Idea for a Slightly New Reason

Posted on by

5

This is not a new idea.  Parents of NT (neuro-typical) kids have used these for eons to get their kids to be organized and to help them get ready more efficiently in the morning.  But I’m using it for slightly different reasons…

“What is it, already??” you are asking… It is the 6 Shelf Sweater Sorter:

kinda hard to see, I know - bad lighting in The Boy's room

kinda hard to see, I know – bad lighting in The Boy’s room

Ta-Da!

Yes, yes.  Organization, check.  Efficient Use of Time, check.  Not wearing the same clothes everyday, wha..??

My child has a signature outfit – he wears it every opportunity he can (which is sometimes several days in a row).  He has a thing with clothes.  The summer between splitting up and the official divorce, The Boy wore the same lime green T-shirt every single day.  Lots of tiny little loads of wash for me.

How does he get away with wearing the same thing several days in a row?  He wears a different hoodie, zips it all the way up, and waits to appear until we have to walk out the door.  And there are times when I do not fight it, even when I should.  To help me enforce the social code of not-wearing-the-same-outfit-every-single-day, I enlisted the help of the 6 Shelf Sweater Sorter.  Each shelf is a place for an outfit for each day of the week, except for Sunday, because we often spend one entire day of the weekend in our jammies anyway.  Tonight, we placed an entire week’s worth of outfits (including socks, underwear, and hoodies) into the sorter, and I’m hoping that The Boy will follow the implied and implicit rules of the Sorter, that he will wear what is in the space for that designated day, and he will not change his mind and scrounge things off the floor to wear.

If this fails, I will have to go to Old Navy and buy 6 more of every piece in his signature outfit.

I really hope this works…

Puberty: Review

Posted on by

0

GuideWell, The Boy and I just read through The Boys’ Guide to Growing Up by Terri Couwenhoven and I think it was a success.  I didn’t prep him too much, just told him I had a book I wanted to read with him.  We sat down on the couch and I showed him the cover, and we started reading.  At first, he was a little uncomfortable (what 11 year old boy wouldn’t be, reading about puberty with his mom?), especially at the illustrations, but as we kept going, he seemed to absorb the information, and be more comfortable talking about it with me.

It was a lot of information all at once (it took us about 20 minutes), and I know we will have to review a few times, but we did hammer home the difference between public and private, as well as who are the people in his life who are OK to answer questions about this type of thing.  These two things are the most important of all, I think, and this book does an excellent job explaining, as well as creating opening for discussion in both of these areas.

In my last post about this book, I mentioned that it doesn’t talk about sexuality, and it doesn’t.  However it does talk about having a crush, or sexual feelings toward another person, and what signals that person may give if they do not feel the same way.  It also talks about ways to manage these feelings, which I think is appropriate to add in a book like this.  I prefaced this subject with The Boy as being further down the road, in high school, maybe.

I felt like we had a successful conversation about the changes he is or is about to go through, and I feel like both of us are more prepared, which is about all I can ask from any book of this type.  I highly recommend this book as a way to start the conversation.

What’d I Miss?…

Posted on by

2

Here’s a recap of the top posts for December, plus one oldie but goodie:

  • No Offense, But… about how this phrase really needs to be put to rest, because despite its “intent”, whatever comes next will ultimately offend you.
  • Happy Day about The Man’s surprise Christmas morning proposal *sigh* :D
  • I Don’t Want My Kid To Be Normal about how special needs parents need to set their sites on different goals for their children
  • Parties about how normal, everyday birthday parties can cause much angst among we special needs parents
  • The Angry Ex about how to deal with an ex who is less than civil

Hope you are having a fantastic start to your workweek!  Only 10 more Mondays until Spring!

Winter at the Beach

Full Inclusion = Extreme School

Posted on by

2

English: A collection of pictograms. Three of ...

For the life of me, I cannot figure out why educators insist on sameness.

We spend most of a child’s formative years insisting to them that they are special, they are unique, they are individuals with a right to their own ways of being.  And then they go to school…

They go to school and learn to become like everyone else, learning the same things, at the same pace, regardless of where their interests, talents, and abilities lie.  Every student must take algebra, every student must take foreign language, every student will be proficient in x, y, and z.

I’m not sure when the trend toward standardization began in schools, although I have a feeling it’s been there since the beginning, because it’s easier and cheaper than individualizing instruction.  The inherent problem with this is that kids are people, and there are no two people who are exactly the same.  Therefore, everyone has special needs.  I need a map if you are giving me directions, otherwise I will get hopelessly lost.  The Man learns by doing – you can give him all the instructions you want, but he needs to play Euchre before he can actually learn all the rules.  The Boy needs breaks and incentives throughout his day to get his work done.  And he needs alone time with an electronic device to decompress.

So why the soapbox post today?

Recently, I have heard some teachers in full-inclusion situations say things like, “They do just fine, until they don’t,” or “He’s on those video games as soon as he gets into the car after school.  I wish his mom wouldn’t use them as a crutch, a babysitter.”  In the full-inclusion world, any kid that visits the resource room more than 45 minutes a week is “severe”.

Think about some part of your daily work that requires all of your concentration and effort.  Now think about doing that task for six hours a day.

My kid with autism works so hard at being like the other kids in the classroom, and he has made great strides.  There are still times where he escapes, lashes out, or just isn’t absorbing much, but he is working really hard.  His ASD classroom provides a space for him to just be without the trappings of societal expectations.  Does that mean the learning stops?  NO, in fact, more learning goes on in that room because he doesn’t have to try to be someone he isn’t.  In the ASD room (some may call it a resource room), they have the ability to slow down, speed up, back up, and stop if necessary, providing those little pit stops on the way to encourage the work being done.  My kid with autism has thrived with this IEP recipe.

And maybe that kid with autism who is on the video games in the car is seeking respite from working his butt off in your classroom all day long.  Maybe his mom lets him have that time to be himself because that’s what’s best for him.

Is full inclusion bad?  No.  Of course there are kids who will thrive in that set-up!  We want our kids to have full access to the curriculum and the right to full inclusion if that’s what’s best.  But I’m not sure why it has to be all or nothing for every kid — It’s pretty rare when “all or nothing” is a good idea in education.

No Offense, But…

Posted on by

8

You know when someone starts a sentence like that, you are going to immediately take offense.  It’s a given.  I’m pretty sure there’s even some physical, defensive response in most people upon hearing that phrase uttered.

The Boy’s class is having a “garage sale” tomorrow to simulate buying and selling products, and I suppose it’s a lesson in social studies.  Of course, with our busy, busy lives over the past couple of weeks, I put off the preparations for this garage sale until this evening.  The idea is that students will find things at home that they do not have a use for anymore, and put those in their desktop sale.  Most kids with autism that I know would (and do) have a real problem with giving up their stuff, so we had a bit of an issue.

I wasn’t sure how many of these “items” we needed, so I contacted a friend who’s daughter went through the same school a few years ago, and asked her if she knew.  She contacted another parent of a 5th grader and reported back to me.  She said this other parent suggested 10-20 items, and that if the kids didn’t want to give anything up, they could do a craft.  My friend asked her if The Boy might draw something (because she knows how much he loves to draw).  This mom responded, “No offense, but it should be something the kids actually want.”

Now, this is secondhand information, and like texts and email, a lot of nuance can be lost.  I’m sure this mom really meant no harm, and she was actually being helpful by passing along information about this event.  But like one of my other favorite phrases (“Don’t worry about it!”), it ends up being immediately offensive, and just by adding “No offense” to the beginning doesn’t give you a pass.  Just because you don’t mean to offend someone doesn’t mean that you won’t end up actually doing it.  It’s a pretty useless prefix.

I know that maybe other 5th graders may not appreciate The Boy’s artwork as much as I do, but there are some really great kids in his class who would probably purchase a few of his items.  In fact some of his “longer works”, which are often pages of comic books that are running through his head, are pretty cool and entertaining.

I’m not upset.  I know that my kid rocks, and I don’t need anyone else’s approval.  But I think the phrase, “No offense…” needs to be put to rest.

apic

Hot Dogs & The Future

Posted on by

4

Sometimes people will ask about The Boy’s future.  Will he go to college?  Will he live on his own?  What will he do when he’s an adult?

The crazy thing about autism, is that it is unpredictable.  I have no clue what the future will look like.  Most parents of NT kids can reasonably assume that their child will go to college or trade school, or get work experience once out of high school, and will be able to make a living and live on their own, find a life partner, and maybe give them grandchildren.  We special needs parents either don’t know if any of that will happen, or we know for certain that it won’t.

As The Boy gets older, I get a better idea, but I can’t say for certain, and I definitely don’t want to judge his capability too early, thereby predetermining the outcome – does that make sense?  I want to be as open as I can to all possibilities so that none seems out of reach for The Boy.

One of the ideas that has been percolating ever since we made this major life decision to move to be closer to The Man and my parents has been to start up our own business or nonprofit, which could be a built-in job for The Boy in the future.  We have lots of ideas, but one that started as a joke, and is still a joke (mostly, maybe, hmmm…) has been that The Man and The Boy will operate a hot dog stand at the beach during the summer.  The Man actually has a friend who did it for awhile and made money doing it, too!

So this is The Boy’s Christmas gift to The Man this year:

Hot Dog Stand Ornament

Pretty fitting, don’t you think?