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

That is not my favorite color!

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Did you know that they don’t make (most) boys’ shoes with velcro after size 3?  Nope.  Welcome to shoelace-land.  So with school around the corner, we were out shoe shopping today.  The real kind of shoe shopping – not the kind where you pop into Target for some flip-flops.  The children were measured for their shoes and are on average about a size larger than last year.  It took about half an hour or so for us to get Mr. A and Miss S all settled with their new kicks.  For M, however, the whole process was more difficult.  We learned that because of his new size, there aren’t anymore light-up sneakers.  *sad face*  It also means that there aren’t too many options with velcro.  (Where we were shopping, there was only one pair of velcro shoes and they were gray.  I think possibly he was personally offended by the color.  “That is not my favorite color!”)  Slip on varieties such as Vans were an option, but there were limited styles.  Anyway, we knew it was coming.  We knew that one day soon we would have to sit down and work with those motor skills on shoe tying.  I may order some of those little squiggly things that go in shoes instead of laces just in case, but we’re really going to work on tying shoes this week.

Initially, M wanted some red and blue Geoux sneakers like his brother Mr. A.  After realizing that they didn’t have them in his size, we checked the men’s department out for alternatives.  M was not thrilled. I was not thrilled.  The men’s department??  Really??  He’s 9!!  Still.  He has big feet.  He’s growing.  I can do this.  Ok, the men’s department it is.  They didn’t have anything that really looked like a boy, so we decided to break for lunch and go to another department store.  After a minor meltdown whereupon we nearly put that, “No Shoes, No Service” rule to the test, we had lunch.  At the second department store we  (again) explained to M that he couldn’t have light-up shoes anymore, they just didn’t make them in his size.  He was saddened, but he was coping.  Then we had to break it that there really was no velcro option available to us on that day except for the slip-ons.  He had a hard time with this one.  Mostly I think he felt like he was losing control of his situation.  He could no longer dictate what kind of shoe he wanted in terms that he understood.  We went through rows and rows of shoes.  This took literally all afternoon.  He was to the point of refusing to wear his own shoes that he had worn into the store, until we found new shoes.  We began to focus on colors and he decided that red would be his color choice because it was similar to the first pair he looked at earlier in the day.  We went through all the red shoes and eventually he reluctantly agreed to a pair of very red sneakers.  Fabulous.  The relief!  G and I felt like we had run a marathon.  We quickly changed gears and headed to a playdate at the park with friends.  The trials and tribulations of shoe shopping were quickly forgotten, but I did have to re-tie M’s shoes several times.  Gotta work on those skills.  One problem at a time!  Third grade here we come!

*side note:  Incidentally – Miss. S’s shoes….um, they’re musical.  I’m going to let that sink in.  ::::MUSICAL:::::  When you walk, the toes light up.  When you put the toes of the shoes together, they play music and the toes and heels light up.  Yeah.  We did not realize that until we got home.  I have to say, it was a little weird discovering that we had bought our daughter musical shoes.  I just don’t even know what to think.  I suppose it will add a new dimension to waiting in lines…

pTSA-20396289p275wMiss S’s musical shoes.

Twinkle Wishes by Skechers.  Photo by Sports Authority.

Be Fierce.  #dropthegrayshoes

#IamAFierceMom

Kelly