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

 

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

 

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

Closing one door, opening another…

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We have dealt with all manner of surprising situations since being blessed with our special needs child. Regularly and often we get to see just how strong and or talented or smart we actually are.  Our convictions and morals are put to the test on such a regular basis that we really don’t have the time to be “wishy-washy” on many issues.  We have to pick a side and just stick to it!  Sometimes of course, we make a bad decision or one that just wasn’t too smart.  We learn fast, pick up and keep going.  We are in the process of making the difficult decision of whether to stay with our current church or pull our family out due to lack of support for Mr. M in Sunday school classes.  We have not had good “long term” church-going experiences.  When we lived “in the city” we found a church close to our home that we loved and could walk to.  We loved the pastor, we loved the people, the location.  It was amazing!  Then we had a baby.  (dun dun dunnn)  Then the pastor left.  Then the personality of the church began to shift and many of our friends left.  Then we had a second baby.  (dun dun dunnn) The baptism of our second child there was so bad we still issue heartfelt apologies for it whenever it is brought up within our family.  He’s 7.  (wah wahh)  Then we moved.  We “church shopped” and found a church in our town that seemed to fit well with our values and our family needs.  We love the pastor and his family, the church is adorable and their children’s programming for little ones is lovely!  The problem is that for older children, the religious education is much more… fluid.  It isn’t a big program because the church doesn’t have a lot of families.  It is a very lean program and while they are willing to support Mr. M to some extent in his class, the special needs families are expected to do much of the heavy lifting with respect to teaching, classroom support and communication within the children’s program.  I hate to be the person that’s all, “this is too hard, I can’t do it”.  But… this really is too hard, and I can’t do it.  I understand that many people do not see all that I do within a school year or even over the summer, but I do a lot and I cannot take on any more responsibilities.  I just can’t.  So.  It is looking like we are going to be changing churches again.  I am upset.  I am upset for the children.  I am upset for me.  I am upset for DH because he finally found a church where he felt at “home”.  For the next 14 years however, its not just about DH and I, its about the 5 of us and what works for the 5 of us as a group.  I am constantly reminding my family (my own family mind you) of this when we come to visit for an extended stay in the summers.  My warnings go like this:  “Don’t forget that Mr. M can wander and he is sometimes difficult in large groups because of the sound.  You may have to repeat instructions to him umpteen times and still, we may not be able to do all the activities that your group does.  Miss. S is still a toddler and pretty much talks continuously unless she is asleep.  Mr. A can be very loud and hyper-active.  There are 5 of us!  That’s a lot of people in your house!”  This is my life.  This is my group.  We go as a package or we don’t go at all.  So… we’re looking at possibilities for our family to join a new church.  There is a church we have been “supplementing” our children’s RE programming with because they are a large church and have a much larger children’s program, so we will most likely end up there. They have more staff, more support and many many families.  They are used to children and they welcome them.  They have a school-age  mid-week “club” for kids and one for younger toddlers too.  They even offer a couple of camps per year.  The downside is that I don’t know that DH and I will fit in there as well as we do at our current church.  Oh well.  See?  This is where I get to test my convictions.  Do I really act as I say I do?  Well, yes, I do.  Or at least I try to.  I know in my heart this is the right decision for our family and well, at least we’ll have a common thread at the new church.  Its a start.  A new start.

Be Fierce.  #OpenANewDoor

#IamAFierceMom

Kelly

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