I put the “I” in Impulse

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Being a parent puts you in a club so-to-speak with other parents.  For some it was a dream come true, for others a “gift” and depending on one’s circumstances it could be quite scary heading into the unknown waters of parenthood.  When you’ve found out you’re the parent of a special needs child you’re then put into a sub-group of parents that you never asked to join!  For some, after getting over the shock, it can be a relief to find other kindred families who may be going through similar growing pains.  To others it can be saddening or shocking.  As for me, I tend to bounce back and forth between relief of knowing why certain behaviors are happening with my child, and frustration at not being able to handle everything better.  Nevertheless, here we all are in this club.  Now, when you find yourself here, its really a sink or swim situation.  Most people become reluctant experts on their child’s particular type of disorder if they want to function.  Its almost impossible not to be.  A few years ago I just knew that something was wrong with my son.  I knew it.  I would ask family, friends, doctors and everyone said, “he’s fine, really, all kids do that”.  Yeah… I was still skeptical.  I didn’t believe it.  You know how it all those parenting books for new babies where they tell you to trust your parental instincts, well, I could just see the alarm bells going off in my mind.  There was something wrong, I didn’t care what anyone said.  I was determined to figure out what it was.  I scoured the internet for similar behaviors and asked all children’s experts that I came in contact with.  I finally got someone to take me seriously.  It was M’s first preschool teacher.  I asked her if he was doing ok in school one day before picking him up and she said “yes, he’s doing fine”.  I then saw M (through a glass window) begin squealing and running around as the children changed stations in the classroom.  (Transitions.  M still has trouble with transitions to this day.)  I pointed out that I didn’t think that behavior was normal and  without missing a beat, she offered to have him evaluated.  DH and I thought this would take a couple of days, or maybe it would happen the next week.  The very next day he was evaluated and we had a conference with the on-site social worker.  She shared her thoughts about his behavioral issues and gave us pamphlets on various occupational therapies and social therapies in our area.  Hooray!  We had a piece of information!  It wasn’t a diagnosis, but it was a place to start.  We received information about a special needs pre-kindergarten and M tested into the program.  Finally, we were going to get some help!  The program was amazing.  M was doing things that I didn’t think we were ever going to get him to do.  (Like sitting in a chair for circle time in class and learning to hold a pencil correctly.)  Towards the end of the year I asked the social worker there if she thought maybe he had ADHD or something similar.  That afternoon M came home with a stack of papers on Aspberger’s Syndrome.  (The school is not allowed to give a diagnosis of course, but this was her way of pointing us in the right direction.)  M had everything on the list.  Every single symptom.  Things began moving more rapidly after this and I found a great autism support group for parents and play group for children.  I found a behavioral pediatrician to receive a medical diagnosis.  We began private therapies and M received an IEP for kindergarten the next year.  Whew.  It was a lot – a long road and it had just begun.  I mention all this because even though I “know” so much about what is going on with him, it doesn’t always click with me right away.  For instance…. impulse control.

M has always had difficulty with self-restraint if its something he really wants.  When he was 3 it was strawberry syrup so we had to stop buying it because he would sneak into the fridge to get it.  When he was 4 it was wandering off – extremely dangerous, so we installed an alarm system and put locked gates around our house.  Now, its video games and granola bars.  While not as dangerous, its still frustrating.  The games I am working on – we have our schedule sheets that the children follow and it helps.  The granola bars…I dunno.  I may have to lock them up.  I’m not sure.  I just find it fascinating that often I can’t spot an impulse problem with M.  How can I not see it??  Is it because he is older and its just not the first thing I expect him to do?  So, my first impulse is to yell.  Its as effective as talking to brick.  I don’t recommend it.  My next step is going to be putting a meal plan on the fridge so that M knows when meals/snacks are going to happen.  I hate to feel like I’m structuring all the children’s lives around M’s issues, but it helps him, which keeps things calmer for everyone else and maybe it will help them as well.  Schedules, lists and calendars have always helped M to feel more grounded.  He can see what is coming next and its not a surprise.  This may work or it may not.  My particular brand of parenting seems to be a lot like running with your shoelaces untied.  I get a few good running strides in until I  trip and fall on my face and and then I get up and do it all over again.  Its a good thing I’m naturally tenacious.  Its a good thing M is so naturally forgiving.  Its worth repeating…impulse control is hard.   Transitions are hard.  Both may always be a problem.  Hang in there folks.

Be Fierce.  #MakeASchedule

#IamAFierceMom

Kelly

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Are YOU on the spectrum??

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If you’re a teen, young adult or parent of a child on the spectrum and you’re reading this, could you give me some advice?  M is in 3rd grade and so far… we’ve pushed.  We’ve pushed through projects and homework and presentations and school events (as he was able).  Now we’re really really having to push.  Homework is much harder, therapy takes more work, everything is so much more effort.  I don’t mind it, it seems to (slowly) be taking hold and he is indeed getting the work done, but it is truly a monumental effort on his part.  So my question is this.  Did your parents/caregivers push you “through” your school work and through your therapies?  Did it work?  Was it worth it?  Are you thankful or did you notice?

We recently had his homework load reduced to an “as he is able” basis.  Sometimes he can do more, sometimes he can’t.  It was like walking through molasses.  We received permission to use dictation software to help him with tests where writing was involved so that he could meet time requirements without worrying about his motor skill abilities.  He uses headphones to handle noise when he needs to.  He uses lists in his folders to remember what he is supposed to be doing without having to ask repeatedly.  The supports are helping.  I just want him to do the very best he can, but I don’t want to push him beyond his capabilities if that makes sense.  Any thoughts anyone?

I haven’t posted lately because ever since M had that verbal assault on the playground from a parent, mentioned in my last post, I have been rather shook up.  I am trying to come out of it.  There are other things to do – too many balls in the air to fixate on just one.  In any case, I may be a bit all over the place here.  Just hang on.  That’s what I do!

I would like Miss S to join Daisy Scouts next year, but there isn’t a younger scout troop at the school, so I am volunteering to be a Daisy Scout leader since I will no longer have any littles with me during the day.  I’m actually really looking forward to it!  I loved scouting when I was a little girl.

#BeFierce  #HangOn

#IamAFierceMom

Kelly

If you’re not mad as hell, you’re just not paying attention.

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This week has been very busy and rather anxiety ridden for me.  You see the thing about having a special needs child is that you really need an amazing support system.  The other thing about having a special needs child is that you don’t always have the time to engage that support system.  So, I am the special needs co-chair on the elementary school’s PTA.  There were only 2 other special needs parents who attended the first PTA meeting of the year, and one of those was the other special needs co-chair!  The thing is that its often much, much more difficult to leave a SN child with a sitter if they have to be somewhat trained, experienced, etc.  Even if you have a sitter that can handle them, it can often be a challenge to leave for a variety of other obstacles.  For example, M wanted the sitter to help him with his homework, not me.  My answer, “No”.  M, “But whyyyyy?”.  “Because she won’t know which parts of your homework to push you to do and which parts you need some guidance with.”  It can be so challenging to figure out when they are being stubborn with a self-care (hair washing) or homework job (reading directions) and  when they simply can’t do it, re:  tying shoes, drawing detailed pictures for math).  I digress.  So, at the first meeting of the week I spoke up to get other SN parents involved in our newly formed parent support group for the school.  The second meeting, regarding the curriculum for the year, was done by grade level and because M has an IEP (individualized education plan), some parts of the curriculum are a little different for him, but still.  I was the only parent who spoke up concerned about the math portion.  There are entire Facebook groups dedicated to how awful our math curriculum is here.  Its time consuming, strays off topic and is harshly skewed toward children with certain motor skill and reading abilities.  In addition to the old school word problems, which while not my forte’ are certainly relevant for applying what you know, the children are expected to write descriptions related to most math problems and draw what I consider to be large, detailed pictures to go along with it.  M is really good at math and up until this point he has done amazingly well with his “drill” sheets of addition, subtraction and multiplication.  His teachers even started using it as a confidence builder for his reading, which due to his ASD is not at grade level.  He does math first, to build his confidence, works on his reading, and as a reward, gets to to some more math.  Now it seems they are taking that away?  I am SO angry.  Spitting fire angry.  I feel like the curriculum is taking away the one subject that M can relax with and enjoy and stretch his mind instead of struggle, and they’re making it another obstacle for him to tackle.  Because he doesn’t have enough of those with pretty much the rest of his life.  /sarcasm.  So I brought this up at the school meeting and the other parents looked at me like I had grown a second head.  Really??  You’re ok with this??  Have you seen the homework they’re sending home??  Its ridiculous.  G says that most likely those parents had no idea what I was talking about because…. they just weren’t paying attention.  They may not have needed to.  If you have a neurotypical child who can handle multiple skills at once and integrated learning in that manner then it may have just been one of those moments where you thought, “Oh, wow, they sure taught that differently in MY day”.  When you have a ASD child who has difficulty accessing the education due to a skill imbalance, its a whole new ballgame.  I understand the school only has 1 curriculum, but how is M  supposed to learn like that.  If he is unable to use his math skills because the math is being  integrated with reading comprehension and oddly, fine motor skills with the drawing, and it is combined with a subject where he is performing at a grade level or two below the math, what comes out in the mix?  Has he then lost all quantifiable skill?  How is it possible to accurately assess that?  So I’m mad.  And I’m not sure what to do.  I did have some good conversations with the SpEd teachers (2 of them anyway) about why this is happening, but its not making me feel any better about it.  I’m looking at alternatives.  I’m not just letting this go.

Be Fierce.  #GetMad

Kelly

#IamAFierceMom

Please Cancel My Subscription, I don’t Need Your Issues

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Hello all.

Oh the playground drama.  ::::deep breath:::: Heavens.  Just gives new meaning to the phrase “Bless Your Heart”. I have this fear that someone else’s playground drama is going to leech out and attach itself to me or my children and then I will be involved in the drama and it will follow me around and cause me nervousness and make me an anxiety-ridden deer-in-headlights.  Did I start in the middle again?  Do you know what “playground drama”is?  Playground drama:  When the values of 100+ families who pick their children up from school (on the playground) clash, causing adults to argue with other adults or children alike, eventually resulting in angry Facebook posts, calls to the school and telephone-like rumors involving wildly outrageous tales and fire-breathing dragons.  I avoid it when at all possible.

I am overly sensitive about getting into rows with other parents because of my special needs child.  Its so difficult to find out anything that actually happened when an incident occurs.  In my experience, most parents of typically developed children begin on the defensive unless they know me personally, instead of relaying facts.  This makes it incredibly difficult when you have a child who can’t actually tell you what happened to them from their point of view.   You can see why I would be a bit jumpy around the drama.

I recently saw someone else having drama which was in our friend-group and I have since started taking my children to the other playground just to avoid the possibility of drama-contagion.  It wasn’t even happening to me, but it was close by.  Too close!  Also, it must be said, I believe that some of this may have to do with stress levels being unusually high with the end of the school-year approaching.  I seem to remember this happening the last couple of years as the end of school year got closer.  You’d think everyone would be too tired to argue, wouldn’t you?  I know I certainly am.  Soccer games, birthday parties, travel plans, extra-curricular classes, school projects and clubs.  I’m DONE.  Bring on the beach!!  Maybe my approach is too extreme.  I dunno, I generally do what I have to do to get through my day with the least amount of stress possible. If that involves switching playground sides, so be it.

*Oh no!  Is this in contrast to being fierce??  Oh, I dunno.  This marathon I run, its really about stamina.  That’s pretty fierce.

#IamAFierceMom

Kelly

If Nothing Ever Changed, There Would be No Butterflies

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The seasons change.  Politics change.  Caterpillars change.  Its hard, all this change.  You never know what is coming next.  Hmm…. what else changes… oh, that’s right.  Our children change.  By the minute.  They grow and mature and learn and explore and every day they wake up and are new people.   Occasionally I come downstairs in the morning and see these two gangly, long-legged boys in my kitchen and I think, #@&*#$, they have grown up while I have slept!!  Honestly, I was at the playground looking for my daughter the other day, staring almost right at her and didn’t recognize her immediately because I was “looking” for a shorter, rounder, wobblier, toddler with two floppy pigtails.  What I found was a taller, slimmer, adventurous little girl with two pony tails bouncing around as she swung on the monkey bars.  My idea of who my daughter is and the reality of who she is growing into were conflicted for a moment.  Its enough to throw a parental brain for a loop whist trying to manage calendars full of field trips, play dates, sports games, family events and various lessons.  Do you know what else is hard?  Big transitions.  Transitions from pre-Kindergarten to Kindergarten can be hard for any parent.  For a parent of a special needs child it can be especially nerve-racking.  My oldest son went to a special needs pre-Kindergarten where the teachers were all special education qualified educators, there were multiple aides in each classroom.  Every child had various support aids to use in the classroom such as seat cushions to help with sitting still, weighted vests, hug vests, head phones etc.  Children received special services for speech, social skills, and occupational therapy.  It was a cocoon of warmth and gentle learning for these unique children who may require non-traditional support to begin their formal education.  The very idea that I was going to take my 5-year-old autistic child and drop him off at an elementary school where he would walk into the building by himself and somehow find a classroom was just terrifying.  Absurd really.  Firstly, M was, well, still is I guess, a wanderer.  I was horrified that he might get lost at school and end up wandering down the street following a cute dog he saw out the window or something similar.  We’ve lost him before so this was not far fetched in my mind.   We sent him to camp and they lost him on the first day.  And then again on the second day.  We lost him on vacation once within our hotel resort for 3 hours and I have never properly recovered from that.  (I’m not sure that he even noticed.)  We even lost him at home one time in the yard which is why my property is gated like Fort Knox.  Its to keep the children in, not necessarily to keep others out.  In any case, this transition takes preparation on the parents’ part, on the part of the school, and some practice for the child.  Here are some of my top suggestions:

*Make preparations for your child to meet their classroom teacher beforehand, and also the special education teacher if possible.

*If your child is entering with an IEP, they will probably have a plan in place and support notes, but in my experience it is a good idea to bring a (small) note with any special supports your child may need in the classroom such as headphones, vests or toileting instructions/ directions.  For example:  Some ASD children cannot handle the loudness of the flushing toilet in an echoing restroom stall.

*Ask to speak to the school nurse about your child just to get to know them, possibly send an e-mail to be kept on file for any school incidents that may occur.  For example:  My son cannot handle being dirty and it causes him to stem.  If he fell and were covered with dirt and possibly some blood from a  skinned knee outside, this would cause him to stem and it might be unnerving to someone who is not familiar with stemming.  I know what you’re thinking!  They’re a nurse!  Surely they are aware of the special needs students in the school.  In my experience, not necessarily.  There are a lot of students at an elementary school.  Trust me, its worth your five minutes.

*Label everything on the inside and out if possible.  I put luggage tags on my children’s lunch boxes and backpacks.  I also suggest Mabels Labels for coats, gloves and sweaters and shoes.  Glove clips are also a godsend.  I got mine from Classy Paci on Etsy.  (This vendor does pacifier clips and glove clips.)

*Be “Loud and Proud”!  Don’t be nervous about your special needs child playing on the playground with neurotypical or developmentally typical children.  This isn’t the 80’s.  Children are consistently in integrated classrooms as much as possible.  They are used to seeing and being around children who may be physically different or who may have varying behaviors.  Its wonderful social skill practice for everyone.  Adults included.  Don’t be shy about play dates or attending school events.  School and socializing are for everyone.  If your child needs support for a school-sponsored PTA event, be sure to ask for it beforehand.

*As the school year progresses allow your child to show off their talents or special interests to their classmates.  This may include bringing in a book to describe themselves:  All Cats Have Aspberger’s comes to mind, showing off fancy tech skills (autistic techies anyone?) for a class presentation with a self-made video or musical piece.  Is your child a math whiz?  Do they know a LOT about a certain animal?  Have a love for patterns?  Help them find a way to show it off for a Show-And-Tell Day or other special class event.  (Usually there are several of these in Kindergarten.)

Take a deep breath.  You can do this.  Your child can do this.

Be Fierce.

#IamAFierceMom

Kelly

Pow!

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Oh I am so frustrated!!  SO frustrated!!  I simply cannot get M’s complexities all lined up so that I can effectively communicate with him.  Its like a never-ending rubix cube!  M will not go to swimming class this week!  He just won’t go in the water!  He does what I call the “spider”, re:  stretched out arms and legs attached to anything permanent.  698160_32724648On Wednesday at the mid-week class, I couldn’t even get him out of the car!  I had to give-in to agree to let him sit that class out so that I could get my other two to their swimming class.  He also got in trouble for pulling that power-struggle with me and is now on restriction from video games.  Oy vey!  I’ve tried pleading, begging, reasoning, reassuring him that we will work with his instructor to try to make it as painless and comfortable a transition into the pool as possible.  No dice.  Here is how serious he is… he actually came up to me the other day and said, “Its ok if you want to keep my iPad mommy, you can have it”.  *headdesk*  Just.  Broke.  My.  Heart.  I don’t want your iPad child!  I want you to NOT drown in the water!!  My head could not be hanging any lower right now.  The current bribe I’m offering is return of the iPad and a trip to the bakery (!!)  if M will attend swimming lessons voluntarily.  We have a super-good bakery in our little town folks, Bennison’s, I mean that alone would have me dog paddling away in that pool.  (Not so great for my Paleo ambitions though I suppose, right?)  M has a lot of Aspberger tendencies, but apparently does not actually have Aspberger’s.  (I really could swear he has Aspberger’s though.  He has every single one of the things you look for in an Aspberger’s diagnosis – even though they don’t technically diagnose that anymore.)  Because of this he has a niche interest in high-level video games.  I really really thought that would be enough to persuade him to just try the swimming again.  We talked about the noise level and I have ear plugs to help with that.  He has a very small class so there is a lot of one-on-one attention and his instructors are SO understanding and patient.  At some point though he has to make the choice to try.  He has to be the one to get IN the pool.  Somehow he is just not making the connection between working and a reward.  As in, you have to go to work at a job (hopefully one that you enjoy!), and sometimes have to do parts of the job that aren’t your favorite things, or that may be difficult and where you may have to try and try again, but in the end there are rewards to be had!  Feelings of accomplishment, confidence, growing your skills, monetary rewards in the case of a job, etc.  Is he going to learn this?  Am I expecting too much from him?  I have developed this little habit of trying to keep myself from falling into a depression spiral.  I use various self-talk phrases to remind myself of what is happening in reality (ie.  not in my head) and what is important.  So right now, its:

  • He’s 8.  I’m his cheerleader.  This is just a small bump in his road.
  • He’ll get through this.  I refuse to believe any differently.
  • If he can learn to read, he can learn to swim.  *This one is a big one for me.  Keeps me sane.
  • #prayhard.  I am his mother for a reason.  I won’t give up on him just because its hard.

Stubbornness.  Its hereditary.

So I have so much built-up anger!  I’m not even sure what I’m angry at!  The water?  My inability to persuade M?  I should have gone to kick-boxing class today.  That always kicks my butt and I leave with a clear head.  Maybe I can hit the gym this afternoon.  That would help me to reset.

#IamAFierceMom  *I won’t give up, just because its hard.  (and today, its really hard)

Kelly

The Man Burns in 10 Days

So, I’m sort of counting up and down at the same time?  Days down until the Man burns at Burning Man.  Days up until dear hubby comes home and I can breathe!  (woo!)  Day 3 out of 16 of handling my 3 mons-ners on my own!  It went well folks, we had a good day (or two, what day is it?).  This is the only problem with this being “just me” in this little child-centric world here.  I literally don’t really do anything else.  I don’t watch news, I don’t go out of our township unless I have an appointment somewhere and there is a babysitter, I literally live in a bubble of a 5-mile radius.  Oddly, most of the time I kind of like it.  I guess its not really a problem.  I know  LOTS and I mean LOTS of people in my bubble and I find that really comforting.  Yesterday I did my new-agey athletic NIA class and then hatha yoga later in the day with a play date in the middle of the day.  The kids love the gym – built in play date and I get a break!  Bonus!  Plus, it forces me to exercise.  Once I get going on a regular exercise schedule, I’m good – I’m there and self-motivated.  When I fall off the wagon, such as when I hurt my back this past spring – ugh – not easy to get back on the flipping wagon.  

*life moments* that take my breath away:  

So the mons-ners made this really awesome apartment building-type thing for their stuffed animals and they wanted to paint it and I kept telling them to wait for a rainy day and it almost rained today so I said that was close enough.  

Here is how they decorated it:  10572242_10152329082962104_1350850395752721503_o

 

Lovely!  The end product is even more colorful.  Lots of orange and pink.  Very 60’s.  

And I got my awesome Mama Ninja shirt today from Mamapowergear.com and I flipping love it.  I haven’t gotten this much “attention” since I was in college.  LOL!  It’s a “hot mom” shirt.  Put it on, and you’re hot!  

*life moments* where I take a deep breath:

Monday at the afternoon playdate where M saw his 1st grade teacher and ran up to her and obviously wanted to engage her, but couldn’t keep focus long enough to carry on a conversation.  WH-questions are so hard for him.  (WHERE did you go this summer?  WHO did you see? etc.)  He has improved so much and can often answer some of those questions…. but not Monday.  Couldn’t keep eye contact.  Couldn’t focus on the conversation.  Kept interjecting video game knowledge to the conversation about our 7-week trip this summer.  You know, I know he has problems, but sometimes they are neon glowing colors.  This was one of those times.  Luckily, his teacher was well aware of his communication deficeits and bless her she did work well with it while trying to engage him.  

Tonight after my appointment downtown ended early (woo-hoo!  2 hours of me-time!!  Yippee skippee!) I went to Barnes & Noble of course and was perusing the books looking for a page-turner. I picked up a book and preceded to start reading the jacket and I’m skimming the summary…..  “Uh huh, uh huh, uh huh, I wonder what the plot is about?  Oh wait.  Oh, right.  Most people don’t actually have an everyday life like that with their child.  Ok.”.  And My head just drooped and I rolled my eyes and just kept walking towards the cookbooks.  Flipping book I picked up.  It was a FICTIONAL story about a boy with Aspberger’s.   I wasn’t sure whether to be upset or offended.  Really??  That’s entertainment??  I mean, I guess.  I don’t know.  I don’t think its entertaining, trying to get your kids to “jump into the car” only to have your autistic child have to do his little ritual things to get into the car.  Or have an order of who gets in the car first, second, etc or there is an actual tantrum.  Or heaven forbid have to try to get him out of the car when he just refuses to go.  I mean, he’s nearly 8, almost as tall as me, if he doesn’t want to go, I can’t do a whole lot to make him go.  *shrugs*  Whatever floats your boat I guess.  I’d rather read about making cupcakes.  Or you know, steampunk vampires, but whatever.  

back to our regularly scheduled programming:

And I found out today that Miss. S got accepted to preschool and our preferred time and teacher (yay!) so, very excited to hear that!  (I had to actually go to the school and interrupt a meeting to ask because I still hadn’t gotten a phone call or letter, but you know, whatever, its my job, right?  Do it Like a Job and all that? )  And I have e-mailed M’s teacher to set up a meeting so that he can meet her briefly before school starts and so that I can go over some strategies for focus during his school “work time”.  And so it starts.  I need to get organized.  Meeting is Thursday.  I’ve already had e-chats with his special ed teacher from last year to get things ready to get started this year.  Its a group effort!

 

Listening to:  BMIR

Random News:  Our glass doorknob to the bathroom uh, broke I guess?  And the babysitter didn’t really mention it to me.  Hmm.  Not sure what to do there – call her to figure out what the heck happened with my doorknob?  Ppffffttttt.  

What’s NIA?  (from NIAnow.com) Nia focuses on the sensation of being flexible in the body but also incorporates flexibility of mind and spirit.  “Flexibility is sensed as energy moving outward. It is the physical feeling of releasing power. Dynamic flexibility (the perfect action between contraction and release) relaxes your body and is sensed as opening and lengthening.” 

Be fierce out there!  The school year is upon us!

#IamAFierceMom