Autism, Special Education, Special Needs, technology

Back to the Drawing Board

 

When my son, M, was born it changed my world.   Everything was brighter.  I loved all the little nuances of having a baby.  (ok, maybe not being up for 36+ hours during a colicky spell – but other than that.)  There was a new meaning for me.  So cheesy, yes, but true.  As he got older I of course thought that I had the most genius baby of all time.  I had all of the parent dreams of my child being a celebrated brain surgeon and a part-time actor on Broadway. (Not your dreams?  Hmmm…)  And then eventually we noticed so many differences between our child and others of his age.  I go into our diagnosis post here.  For example, my son couldn’t sit in a chair for nearly more than a slight moment when he was in pre-K.  I couldn’t even imagine him in a regular school setting.  I peered through the little window of his pre-K classroom thinking, “He’s not going to make it.  The world is SO hard, what are we going to do??”.

***And here is where I would love to interject with how therapies worked and we pulled together and found strength and alternative options for him and now he’s overcoming everything against all odds etc, etc.  But that isn’t really what happened and in a lot of ways, our situation has gotten more complicated.

We did find ourselves in a satisfactory public school with reasonable resource (re: Special Education) teachers.  We enrolled M in private pediatric OT (occupational therapy), found appropriate special needs play groups for him, worked with our pediatricians to find helpful medications to slow his impulse control down so he could  think more clearly.  Did it fix the autism?  Absolutely not.  Did it help the “sitting in the chair” efforts.  Absolutely.  Several of the teachers throughout elementary school were competent, a couple were good, and 1 was outstanding.  At least there was 1.  We had a few battles, most parents do, and most special needs parents certainly do.  There was one entire year where my son’s goals consisted of 1) not crying during the day and 2) having snack.  I’m not sure he really met either of those goals that year.  By the end of elementary school, he was doing ok, but had stopped progressing with any meaningful speed.  Now that he is in middle school, well, it hasn’t gotten any better really.  We’re hiring a team now to manage his IEP to ensure that he has actionable goals in school and an advocate to represent our family to the school and district.  Hopefully this will allow him to access more of his educational potential.  I was disappointed, frustrated and after all of the shock of the teacher conferences wore off, I felt like we were going to need a new path.  M was not going to be able to follow traditional academic to career paths like my other children might choose.  Not even if they were modified for him.  We were going to have to think outside the box.  For me this was so foreign.  I was pushed right up the academic ladder with no other alternatives given to me.  The thought of my child veering from the tried and true career path that I was so familiar with was daunting and scary. I was pretty sure I had failed my child at age 10.

My husband works in technology, and he came home in the midst of my “sky falling” episodes of  teacher conferences and started asking me some questions.  “Can he do simple math?” he asked.  “Of course”, I said.  “Can he fill out a form and write a simple paper?”  I was curious now.  “Yes, I think so”.  “Well, maybe not academics then, but there is a such thing as e-Sports you know, and you can earn an income doing that.  Maybe he could earn a place on a team?  We could look into tournaments”.  This totally blew my mind.  I don’t watch gaming and I thought just “kids” did that on YouTube.  Oh no, my friends, its a thing.  Its real.  Millions of people (80+Million according to ESPN gaming) watch video gaming tournaments around the world and yes, you can be a professional gamer.  Approximately 44% of those watching are parents, 38% are women, and more than half are employed full-time, lest you think that these are kids camped out in the basement of their parents’ homes.  The gaming industry is a multi-billion dollar industry and console and MMO (mass multi-player online gaming accounts for about 57% of all gaming (source:  wePC.com, NewZoo).  Twitch.tv and YouTube are apparently the biggest video-streaming sites for eSports.

So, most kids these days are good at gaming.  Spectrum kids/adults are often better.  Its the ability to hyper-focus and hone in on a particular detail or subject for a longer period of time than neurotypical counterparts.  They can find the differences in patterns, what doesn’t fit, puzzle solving – that sort of thing.  My son beat Super Mario Galaxy when he was 3.  Without being able to read.  I have no idea what this path might look like for our family, for my son in particular, but the path he is on has ended.  He has to make a turn, try something new.  So we’re going to try this.  We’re looking into teams and tournaments.  We’re beginning to teach him to record and edit video and he’s practicing speaking on camera.  He’s learning to code a little bit.  All of those skills are practical in the “real world”.  Maybe he’ll use them one day.  I figure if all we do here is to give him a hobby where he can be creative and reinforce his self-confidence, then that’s ok too.  My daughter ice skates in competitions, my son does theatre performances, I guess my oldest  will check this out.  Stay tuned!

#IamAFierceMom

Kelly

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Autism, homework, Special Education, Special Needs, Uncategorized

School Bells Ring, Are you Listening..

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Photo by Tsu Nellis

Cause here we go again folks!  The school year is upon us here in the lovely Midwest.  I realize that in a lot of places school has already started… but perhaps you can still use this lovely thought as you’re sending your child back to school this year.

Speaking of THIS year.  Its a big one for us.  My BABY is going into Kindergarten!  And I’m so excited!  And also terrified!  And probably you know, I think there are maybe one or two staff members familiar with our family who are also somewhat terrified that our baby is going into Kindergarten because they have watched her grow up with two older brothers… Each season she would toddle in and out of the school walking a little taller, spouting a few more words, pointing out a few more numbers.  This child is ready.  MORE than ready.  She’s loud and exuberant and wholly unapologetic about her ideas!  I’m half way  expecting a phone call home the first day explaining  why she had to be removed from the principal’s office because she didn’t understand why she could not be the principal that day as she was certain it was her turn.  Some of the prayers I say for these children, I tell you.  They are something.

And my oldest.  My spectrum child, M is heading into fourth grade and I cannot even believe it.  Can not.  He had such a rough year last year that really by February, I had mentally tossed all of his academic goals and just told him to focus on making it though his day every day.  “Get to the end and try not to cry.  Afterwards we’ll have snack.”  Big goals.  Thankfully, as always, M absorbs much more than we think, and he seems to be in an ok spot academically.  He maybe be a little behind, but we have worked hard this summer to catch him up.  He is set up for a great year so far.  I have created a “transition plan” for him and his teacher reached out a couple of weeks ago to set up an appointment with us for an early meeting.  He has seen and spent time in his classroom and time with his teacher.  He is on great medication to help with his ADHD.  I have LOTS of backups at the ready for homeschool co-ops, additional tutoring and learning plans to supplement his school work if necessary and I have to say, having that ready to go, has really made me feel more comfortable with him being in a regular classroom.  Maybe because I’m not afraid to pull him out if needed.  I’m not afraid to try something else if this just isn’t working.  Sometimes you just cannot put a triangle where a circle should go, you just can’t.  If you have a special needs child heading back to school and you are concerned about “where they are” academically or how they are going to do this year, remember this:

The flower that blooms in adversity is the most rare and beautiful of all. ~ Mulan

M’s first grade teacher once made an announcement to the parents of her students at the beginning of the year regarding homework and expectations, “They are young.  They have a LONG road ahead.  Please remember this.  Pick your battles.”  ~ Mrs. P, First grade teacher

And Mr. A, my middle child.  *sigh*  I’m not even sure what to say.  I never worry about him; he doesn’t need it.  He’s responsible, a self-starter, super smart, even gifted possibly.  His biggest problem actually is that he indeed IS the middle child.  He always feels that he doesn’t get enough attention, even when we go out of our way to give him extra attention. Oh, and possibly that he is sleep deprived.  He has always been sleep-deprived.  Like from birth.  M just feels that if he is awake, Mr. A should be awake too.  Its been difficult for Mr. A, although he is learning to fight back.  We’re enrolling him in additional extra-curricular activities this year to try to broaden his world a little bit.

Good luck to everyone!  We’re all in this together.  #BeFierce

#IamAFierceMom

Kelly

 

Autism, Special Education, Special Needs

Don’t Make Me Put My Heels On and Roar…

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How quickly I go into a defensive mode.  Am I jaded?  Do I think everyone’s out to get me?  I have no idea.  We are on vacation right now and a few days ago we took the children to Disney World.  In the past we have always gotten the “special needs” pass for Mr. M.  Sometimes we used it, sometimes we didn’t.  This year, M was having a difficult time transitioning to the crowds and noise and movement all around him, so we went to get the “pass”.  They have a new-ish pass now that is linked to your park tickets or your park magic band and has a photo attached to it, so that it can’t be sold or used by someone not in your party.  The cast member at the counter wanted to know what we needed the pass for, a perfectly reasonable question and why I thought we would need a pass for him throughout the day.  I told her and she accepted my explanation immediately, but for some reason, I felt the need to defend my response.  “Look at him, ” I said, “he can’t even stand here with me right now.  There is no way he is going to make it through a lengthy queue with a crowd of people in the hot sun”. At this point, M was jumping up and down hurling himself towards the service counter trying to pull his body up and then crashing down on the floor where he would lay down and spread out as if he were making snow angels on the linoleum.  He was turning his head from side to side repeating noises, “bleh bleh bleh”, is a favorite phrase at the moment (from Hotel Transylvania 2).  By the time we left, I felt like she didn’t believe me, even with the obvious display of noise sensitivity and over-stimulation.  I would like to point out that now, looking back, I am sure ALL of this was in my head.  She was perfectly polite and helpful.  However, at this point, with a 9-year-old on the spectrum, why in the world would I even care if a cast member at a theme park thought I was trying to “pull one over” on the system?  I have tougher skin than that.  Or at least I think I do.  Maybe I don’t?  Maybe I am tired.  Am I constantly on the defensive so much in educational and extra-curricular settings that its an auto-response to anyone who questions my son’s diagnosis and our family’s hard work to handle the situation?  Two years ago when we took the children to WDW, I actually brought a copy of M’s diagnosis from the doctor so that I wouldn’t even have to go into the details of his neuro-difficulties.  Occasionally we have (a few – definitely not all) school administrators who declare they don’t believe M has a spectrum disorder at all.  That throws me into defense mode awfully fast.  They think he is stubborn or simply not trying with his schoolwork, often failing to keep in mind the amount of energy he has to expend in order to hold himself together to interact with other students and adults in an appropriate manner while managing the amplified sounds of the lights buzzing, and ambient classroom noises and movements.  His day is exhausting.  Every day.  I suppose that I feel a need to protect him from the blindness that some others have when interacting with him.  Eventually, I imagine I will have to let down my guard a little to gradually allow him to learn to handle those situations on his own.  That makes me exhausted just thinking about it!  Alas, that is another problem for another day.

#BeFierce  #Don’tGoDefensive

#IamAFierceMom

 

Kelly

 

Anxiety, Autism, Children's Schedule, Pets, SAHM, Self-Help, Special Needs, Uncategorized

So, I’m talking to my cat…

 

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I worry.

A lot.  I worry about everything.  My kids.  My family.  The new condo building going up down the street from the elementary school.  Politics.  Whether or not my children actually remember their manners when they are away from me.  (!!!)  Bless their hearts we try hard.  And sometimes I worry about myself.

I asked my cat to brush his teeth the other morning and I swear, I thought that was the end.  I was sure my mind was going.  You see, I am always trying new organizational techniques to try to find something that will help us get out the door, teach good habits and keep the children up with their chores, activities and homework.  Plus – we have 1 ASD child and one 5-year-old, just to mix it up good.  We’ve tried charts with stars, time outs (Who does this work for??  My children think its fun!), checklists and good ol’fashioned hollering.  I think I have found something that seems to work for me though (for now)…. I made the children little schedule sheets for morning, afternoon and bedtime.  They are all different according to responsibilities and age.  They change every week, so that the chores change and on days where the children have activities after school the times are more like “guidelines”.

Example:  

A’s Afternoon Schedule

4:00 PM Snack, Homework, Put away laundry,
Shower

6:00 PM Dinner

6:30 PM chore: Take Recycling Out

7:00 PM Freetime

They have to follow each sheet before any free time of any kind and I only give 1 reminder with a 10-minute time allowance to fix their chore, homework, etc.  If the timer goes off, they then choose one of two possible consequences for their infraction.  Now that I’m writing it out it sounds a  little complicated, but really its very simple and it has cut down on my shouting at the children to do every little thing.  The timer does most of the work.  It either goes off and the work is done.  Or it goes off and the child chooses their consequence.  (I don’t give a consequence if they’re working on it when the timer goes off.)  Anyway.  It was day 2 of our new chore/work system and was going pretty well and I was giving Mr. M a first reminder about brushing his teeth and I just couldn’t find him.  The children run all over the house in the morning like little chickens and I dunno, I looked and the first face that I saw at about the height where Mr. M would be was George, our cat, so I said, “Go brush your teeth!”.  George glared at me in disgust and curled up again on his chair in the kitchen.

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G was there!  It was odd.  He said, “I don’t think that’s something cats do honey”.  I thought well, that was it.  It was a nice run, but the marbles are ready to roll.  I’m a few colors short of a crayon box.  Since then, I’ve made up with George and we’ve discussed how I shouldn’t expect him to brush his teeth and he wanted to know if he could have more canned food.  I said no.  (Ok, maybe he didn’t say that – but he was thinking it.  I could tell.)  I’ve chalked my missing marbles up to a lack of coffee and not getting out of bed earlier.  A constant problem for me.  Oy vey.  I’ve even had my doctor tell me that my “disorganized brain” is due to being with several young children all day, every day and that over time, as they get older, my brain processes should return (hopefully) to normal.  There is actually a medical term for it, I can’t remember it at the moment.  (Ha!)  There really is though.  Its an inability to go completely from one thought to the next because of constant  and repetitive interruption.  I have actually gotten better, but obviously, re: my conversations with George the cat, not back to normal.  In the meantime, it helps to have an understanding pet.

Be Fierce.  Organize those children!  Holler at the babies less!  Talk to your pets!

#IamAFierceMom

Kelly

 

 

 

 

 

Autism, Bullying, Playground, Special Needs

Playground Antics

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I have got to grow thicker skin.  Or home school.  One of the two.

My boy M.  He gets the short end of the stick on the playground so often.  When he was younger, maybe 5 or 6, he would get pushed around at the park sometimes because he didn’t understand how to interact with children as well as others and sometimes they made fun of him.  He didn’t realize they were making fun of him and that made them mad!  So eventually they would resort to physical pushes and punches which he understood hurt, but not why he was being hurt.  Eventually he learned to push back and punch back.  It was a big milestone for him!  And also, the beginning of hard knocks on the playground.  He’s a kid, it’ll happen.  Well, in our “everyone’s a bully society”, the parents jump first and ask questions later.  I admit, I’ve done the same thing – we’re all worried about our own children.  Its a safety issue.  The problem is that many children never learn to fix their own problems.

I am so angry.  A dad on the playground today verbally assaulted M like he was an adult.  He was raving at him and M didn’t know how to respond.  He just started screaming.  He’s 8.  I RAN over to where this was happening and tried to redirect the man’s anger towards me.  The dad kept repeating himself over and over and eventually I said that we needed to either call the paramedics, an attorney or let it go.  After everyone calmed down we eventually had the children talk about how hitting was not appropriate behavior for the playground.  M apologized 3 times, tried to fist-bump and shake hands with the boy and the boy refused to participate.  Those are huge social milestones for M.  He even called the boy a “little dude”.  SO much progress.  In the end, it wasn’t the dad that went to the school to make a report.  It was me.  M is currently so afraid of the dad, he doesn’t want to go to the playground.  I am sure we don’t have all the information.  Still, stress.  Over a playground.  ::headdesk::

Ugh.  Its stuff like this that makes me want to home school.  Stupid politics.

Anxiety, Autism, fine motor skills, Special Education, Special Needs

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

Children's Schedule, SAHM, Special Needs

What kind of mom are you?

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I’m a worrier.  A worrywart my grandmother called it.  I worry about what others think even though I may claim not to.  Goodness knows I try not to worry about who may be judging me, but sometimes it just sneaks up on me.  A friend of mine posted a link to Facebook the other day from a blog post about different stereotypes of moms at schools.  Firstly I was just a little bit horrified because I am sure that I have been several of the moms in the blog post on at least one occasion.  Was it a joke post?  Maybe it was… I hope so!

There was the “hungry mom, pajamas mom, hippie mom, sports mom, PTO mom, perfect mom, and of course, the mom blogger”.  Did this even leave anyone out?  I mean, we can’t all be June Cleaver and if we were… wouldn’t that fall into PTO mom category?  Is that what other parents are thinking on the playground at morning drop off?  (Are you thinking that at drop off?)  I will admit we all have different styles.  There is one mom, that I see nearly every day and I don’t even know her name, but I call her “jogger mom”, because she does her daily run to the elementary school in the afternoons to pick up her child.  There is “svelte black-suit mom” that I’m guessing works in a corporate setting somewhere downtown because she looks very sleek and urban every day.  There are the SAHMs like me, who while having different styles, definitely dress more casually than the workplace moms at the school.  If we’re going to put labels on everyone, good grief, what about the exceptions!  Yes, I have dropped my children off at school still in my pajama pants.  I was also wearing a full-length heavy parka and snow boots at the time.  Its happened maybe twice in 3 years.  Do I get a pass for that one?  With a special needs child as well, some mornings … are just hard.  Most mornings are just fine and really we have a pretty good little routine down and let me tell you a happy ASD child is one with a good routine.  Sometimes though – sometimes are hard!  I think all special needs families and those with multiple children would agree that you can encounter crazy events trying to get out the door on occasion.  We woke one morning to find that my son had spread a very thin, even layer of sunscreen all over our living room rug.  Another morning he was covered in strawberry syrup (and so was the couch).  If you have one very ill child and two very healthy children and you’re trying to get out the door its a whole new host of problems and then what about the “spider”.  I’ve written about this before – when one of the children just.  Won’t.  Go.  They throw their arms and legs out like a spider so that they can’t get on the bus or in the car.  Its stressful.  I’m just saying that if you’re having one of those mornings, maybe fashion and hair styles aren’t super high on your priority list.  Maybe that pajama mom isn’t a “pajama mom” every day.  I think we ought to be a little more accepting of others’ situations before tearing them down.  Goodness knows the world is hard enough as it is.  Let’s not add to it.  Having an ASD child, I’ve been there when my child was having a very public meltdown.  Staring doesn’t help.  Silently judging doesn’t help.  Offering to hold my bag, water bottle, sippy, other child’s hand, etc, would be helpful.

I will admit that I have often wondered at the decisions of other moms that I see in passing because it doesn’t seem to be a decision that I would make, but that is also coming from my background and point of view and not theirs.  I couldn’t possibly know what its like to be in their shoes.  This is an important thing for me to keep at the front of my mind.

I’m just going to keep doing what I do.  Now what I may do, may not be what you do, or they do or he or she does, but that doesn’t mean that I don’t wholly accept the decisions that others make.  This is a really hard issue for me.  Its my “damage” really, so by me writing about it and putting my vulnerabilities out there – I’m really taking a step, but I have definitely done my share of value-searching today and I wanted to write about it.  So, my point, after all that, was if you see in me in my fleecy frog pajama pants and crocs running full-tilt across the playground with two or three children in tow, please, just pretend I was wearing lovely matching outfit in crisp fall colors.  Cross your fingers for me to not trip over a bump in the sidewalk in those crazy shoes because I was probably having one of those days already.

Be Fierce.  #WearFrogsLikeYouMeanIt.

#IamAFierceMom

Kelly