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

 

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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

 

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

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

 

 

 

 

 

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

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