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

 

Autism, Bullying, fine motor skills, homework, Special Education

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

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

Autism, church, SAHM, Special Education, Special Needs

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

Anxiety, Children's Schedule, SAHM, Special Education

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