Tag Archives: autism

In the Nick of Time…

Time is of the essence....

Time is of the essence….

So – where are we at with Henry and could our luck be turning? It depends on how you look at it – and I’m looking at it with a “glass half full”.

A week ago Wednesday, we were still debating options for Henry. It had pretty much been decided that he would drop out of his university courses… His confidence had been so shaken – he kept saying that he wasn’t sure he was cut out for it – that he didn’t know if he could do it – what happens if??? So, I began to make phone calls. First – to the residence people. If he dropped out of classes, but was returning in January, could he stay in residence in the meantime? Left Brain and I agreed that he was better off at school with friends, and in the environment of the intelligentsia (!!!), than upstairs in his room by himself for 2 months. And Henry wanted to stay at school – he loves his independence – and as he pointed out to me… “You know, I do have friends here and stuff to do…” Okay – great.

So – they said yes. As long as he didn’t party too much and disturb the other kids. I almost snorted into the phone. I told her, that although she might want to take it with a grain of salt, as it was coming from his mother and all…. Henry is not a party-er – and he definitely would not disturb anyone. One thing down….

Next up – talk to the Admissions people at the college to find out what his options were for January. So keep in mind… this was Wednesday that I made phone calls, and/or sent emails. Late Friday afternoon, I heard from the Admissions people that indeed, he could start some programs in January (I had asked specifically about 4 or 5 programs); but the deadline for applying for said programs was THE NEXT DAY!!! Cripes! Okay…

Thank goodness that everything these days is done online. And since he had been a student of the college last year, they already had high school transcripts and his marks from the first year. So he made his applications – although he was beyond stressed that he had to do it at 7:00 p.m. on a Friday night. So to simplify things, I picked two programs for him that I thought were up his alley, and he picked a third (horticultural practises or something – where’s the job in that if you’re not a farmer??!! Perhaps I’m being shortsighted, but I think he was grasping at straws… And I wasn’t prepared for a debate on his long-term goals at that point!)

Then on Monday, I called the Admissions people (again…) to make sure that there wasn’t anything that they needed for these applications to be considered. Everything was fine. And so we waited.

Thanksgiving has come and gone, and I am happy to report that he has been accepted into every program for January. And we start all over again. That glass is definitely half full!

Happy Thanksgiving

Happy Thanksgiving Canada!!

Happy Thanksgiving Canada!!

It’s Thanksgiving in Canada – today is turkey day for our family. It is a time of giving thanks for the harvest traditionally. For me, it is a time to give thanks for all that I have. And it is my favourite time of year, bar none. I love the colours, the temperature, the food, the feeling of new beginnings that it engenders with the beginning of another school year.

What am I most thankful for today? Of course, my 3 boys (that includes the big one too, of course!) And with Henry’s recent struggles, I am thankful that what Left Brain and I have been telling our boys forever actually sunk in. No problem is too big that we can’t solve together. There is nothing that they cannot come to us with. Together, we are a team and we will help them, no matter what.

When Henry was in trouble, he came to us. Instead of muddling through on his own for whatever reason, he came to us. So today – that’s what I will be giving thanks for.

An Unscheduled Visit…

“Mom?” His voice is shaking – I know he’s crying – or trying really hard not to. “What’s up bud?”

It’s 6 a.m. – I’ve been up for an hour and a half. It’s too early to put out the garbage – I’ll wake up the neighbours with the rumble of the bins. I’m trying not to touch the side of my mouth or the inside of my nose – I have cold sores brewing. How am I doing otherwise? Just peachy…

We’ve gone from a nervous start (at university), to dropping a few courses to lighten the load, to considering dropping out for the semester. Left Brain and I have had several visits for discussions with Henry about his options. I’ve had many more visits with advisors and counsellors to look at alternatives.

Henry was so proud and excited when he started school (was it really just 3 weeks ago?) Then he started doubting himself… Could he do it? Did he make a mistake? Could he handle the load?

Then a Chemistry Lab with an impatient Teaching Assistant, who got mad at him for asking questions (!!!) How does a teacher get mad at a student for asking questions???!!! Isn’t that what we tell our kids to do when they don’t understand something? Isn’t that what teachers are there to do? Teach?!

So… now we’re trying to figure out how Henry can stay at school – because he loves being independent… But he’d have to stay in class – and as he said the other day… “How long are you going to make me suffer through this?” We know we can switch to something else for January – but what do we do in the meantime?

So… we are trying to avert a nervous breakdown in our son. And give him options to make him feel confident and excited again.

And who’s preventing my breakdown, you might ask? Thank God for Left Brain….

Dance Like No One’s Watching!!!

Dance with abandon – with joy – with a carefree spirit! Dance like no one’s watching. Because you can – and you should when there is something worth celebrating. And this is how I feel.

I'm a dancing fool!

I’m a dancing fool!

Now – just on the dance… I did try to upload the Elaine dance from Seinfeld, but I couldn’t find a clip that didn’t come with ads. And I must say – I do a mean rendition of the Elaine dance – but I’ve had to pull back on some of the moves, because I don’t want to put out my back!!!

So – why am I so happy?! Is there a calorie-free chocolate fudge sundae out there? Have I discovered that I actually can eat Blizzards whenever I want without retribution on the scale? Did I shoot 72? Uh – no…. This is even better. We made it!!! Henry and I – that is.

First – Henry. He made it through his debut year of college. He passed everything and gained entry into his program of choice at university. And what is the program? Biological Science… Holy Cow!!! He had to maintain a combined average of over 70% in the math and sciences to get into this program. And this is the kid that I wasn’t sure was ever going to “get” math. When I think of the hours we spent trying to figure out how to explain math word problems. Talk about a double whammy!!!

And he managed residence and living on his own. Was this without some anxiety spells and many calls home? No – but who cares? He stuck with it, put his nose to the grind and got it done.

Secondly – me. My first year with an empty nest. Did I shrivel up and die? Did I drown myself in a mountain of Oreo’s? Although I wanted to at times, instead, I embarked on the “I’m Worth It” project (see https://mypuzzledlife.com/2014/11/). I’m down 30 lbs. and feel fantastic. I feel like me again – when there was just a me. Now I have Super-Duper Me, plus my wonderful boys (FYI – that’s the kids and Left Brain).

So – hooray for Henry! I’m so proud of this kid. So I’m dancing like no one’s watching!!!

The R Word

images

“Are you retarded?” Or how about the ever popular, “You’re such a ‘Tard….” (Had to capitalize that – my computer kept correcting it to yard…) We’ve all heard these before – perhaps these days in the schoolyard, or searching back, in our childhoods.

So – when is it okay to call somebody retarded?

Recently, a FB friend posted a video by Elizabeth Plank, who asked this very question. She is a Senior Editor at Mic, a leading news and media company for young people. I’ve included the video – it’s a short watch. She interviews a young man who has Down’s Syndrome, and who also happens to be gay. She also interviews his Mom. He is a delightful, joyful, artistic, enthusiastic young man and I can’t imagine that he hasn’t brought anything but a great deal of joy and happiness to his family.

Out of curiosity, I googled “mental retardation.” The Wikipedia definition is as follows: “Mental Retardation, also known as intellectual disability, a disorder characterized by significantly impaired cognitive functioning and deficits in adaptive behaviours.” Okay – so that’s the technical definition. Down’s Syndrome is “typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.”

If you have a child with special needs, and particularly, a child with developmental delays, you are definitely familiar with the DSM-5. This stands for the Diagnostic & Statistical Manual of Mental Disorders, 5th Edition. This is the go to manual for figuring out what your kid’s deal is; the Bible as it were (if you’re into that). Interestingly, there is no definition in this manual for mental retardation. First of all, to characterize someone as “retarded” is too non-specific (in a clinical sense). But I did look up Autistic. The definition is; “These disorders are characterized by social deficits (check) and communication difficulties (check), stereotyped or repetitive behaviours (check) and interests, sensory issues (double check!!), and in some cases, cognitive delays.” So – this last part is very important. If your child is autistic, there may or may not be cognitive delays. Hence – my concern regarding the whole “retarded” moniker. There are many ugly words out there – they can hurt so much more effectively than a quick jab to the chin.

When Henry was young, people would ask me what was “wrong” with him? Can you imagine doing that to a stranger? Imagine how I felt…. I would mumble something about a speech delay, while inside I was screaming… “I DON’T KNOW WHAT’S “WRONG”!!!! WE ARE HAVING HIM SEEN BY SPECIALISTS AND NOBODY CAN GIVE US A DEFINITIVE ANSWER!!! DON’T YOU THINK I’M TRYING AS HARD AS I CAN?! DON’T YOU THINK HE IS?!” And then I would continue on as quickly as possible – my mind a whirling dervish of thoughts.

When people casually and carelessly throw out words like “retarded”, they have no idea how hurtful they can be. I know how hard Brian and I have worked to try to get Henry to where he is today. And the amount of work that it takes for Henry to navigate his way through a world that is too often judgmental and conformist is staggering. I can only imagine it…

So – when is it okay to use the word “retarded”?

Never…

-PAXP-deijE

Letting Go – Part 1 – The Kids

If you're wondering...  that is NOT me....

If you’re wondering… that is NOT me….

As part of the I’m Worth It Project (see https://mypuzzledlife.com/2014/11/25/im-worth-it/), I assembled a team. Recently, I was in to see my hypnotist, who is also a life coach. (Check her out at http://www.georginacannon.com) As I was speaking about various issues that are troubling me at the moment, she very quietly handed me this poem…

Letting Go

Letting go does not mean to stop caring
it means
I can’t do it for someone else
It is not to cut myself off
it means realizing I can’t control another
it means to admit I am powerless
so the outcome is in God’s hands – not mine.

To let go is not to enable
but to allow the other to learn from natural consequences
To let go is not to blame or change another,
it is to make the most of myself

To let go is not to care for, but care about
It is not to ‘fix’, but be supportive
It’s not to judge to ‘allow’ another human being
It’s not to be in the middle, arranging all the outcomes,
but to allow others to affect their destiny

To let go is not to be protective but to let another face reality
It is not to deny, but to accept
To let go is not to nag, scold or argue
but to search out my own shortcomings and correct them
And it is not to adjust everything to my desires
but to take each day as it comes
and to cherish myself in it.

Author Unknown (with grateful thanks)

The last paragraph of the above is a killer – for any parent. Having children changes your life forever…There’s a great line from the movie, Carnage, uttered by the character played by John C. Reilly (and forgive me if I don’t get this absolutely perfect); “Kids suck the life out of you and leave you with nothing.” Now I don’t share his sense of doom when it comes to having children. I can’t imagine my life without them – they have brought me so much joy. But let’s face it – we’ve parented our children quite differently than our parents did. I don’t think my mother had much trouble Letting Go when it came to me and my siblings. But there’s definitely got to be a middle ground.

Even when your kids are out of the house, you still worry. But you have to let them live their own lives and make their own decisions – good or bad. That’s the only way they’re going to learn. But upon reading this poem for the first time, I thought to myself – how does a parent of a special needs child let go? I don’t think we can ever truly let go – especially when there’s been so much work and advocacy from Day One – that just doesn’t end. But there are degrees to which we can let go. Saying goodbye on the first day of school, walking behind him the first time he walked to school on his own and darting behind street signs (as if those poles hid me!) so he would think that he was, indeed, walking to school “by my own”; letting them go on a sleepover (where you keep your phone handy and don’t go out or drink anything because you might have to pick them up at a moment’s notice); waving to them as the bus for sleep-away camp pulls away (and then sobbing pitiably for 2 hours after – and of course, pre-posting cards and care packages so they’ll be there when they get to camp…); and the big and most recent Letting Go – moving him into residence at college.

And of course, there’s a trust issue when you’re Letting Go. You have to trust that you have laid a foundation that will enable your kids to find the correct, and more importantly, the right path, for them. Who knows how it will turn out? There will be more instances of me having to Let Go – but I will always, always be there in the background for both of them. And hopefully, they will not ask for my help.

A Bump In The Road

Watch Out!!

Watch Out!!

A couple of weeks ago, Henry was jazzed!  A friend of his from camp had been accepted to his college for next year.  They hatched a plan…  They would be roommates.  Great – I’m thinking – a known quantity….

Then of course, I started asking specific questions.  Has she even asked her parents if this is OK?  Doesn’t she want to live in residence for her first year?  What is her budget per month?  He tells me she’s flush!  She has a job – so no problem!  Of course, Henry’s idea of flush is $100….

We started some research into 2-bedroom apartments in the bustling metropolis of The Shwa.  Surprisingly (but maybe not – this seems to be a trend for college/university towns)…. a 2-bedroom apartment is quite expensive.  Then he said, OK – I’ve talked to my friend and we’ll get a 1-bedroom and take turns sleeping on the sofa!  Uh… no.  That would get old pretty darn fast. Then – the proverbial bump in the road…

Her parents don’t think she’s ready to live on her own (she is also on the spectrum).  And then I find out that she lives in a nearby town, so can bus to school.  Not surprisingly, Mom wants her to live at home in her first year at college.  So – what’s the big deal you say?

Well – kids on the spectrum don’t make friends easily.  In fact, upon gently quizzing Henry, I find out that he has not really made any friends.  Acquaintances and congenial classmates – yes.  But somebody that he would feel comfortable asking to be roommates with him?  No.  So – aren’t there housing campus services that would help him find a roommate?  Yes – there are.  But would you trust an unknown person, arranging for an unknown roommate for your kid with special needs?  No – I didn’t think so.

And this makes me feel very bad for Henry… and sad.  I have lots of friends that I can call on in times of need – but my son does not.  I don’t need things to be easy all the time – but do they always have to be so damn hard?

 

I Can Do It “By My Own”

He is, indeed, doing it "By My Own"...  nothing a hose couldn't take care of after!

He is, indeed, doing it “By My Own”… nothing a hose couldn’t take care of after!

“By My Own…”  This is a phrase that Henry used regularly when he was a little guy.  He couldn’t quite get the phraseology right…  I would patiently remind him that it’s, “I can do it on my own,” or the ever popular, “I can do it by myself.”  But I’ve gotten used to the By My Own phrase – because he still uses it.

Towards the end of his last semester, he was required to pick his courses for semester 2, all while studying for exams for semester 1.  Was he stressed?  Uh – yeah!!  He is registered with the Center for Students with Disabilities and has an advisor.  As well, we connected with his guidance counsellor so that he could discuss his options.  So – courses were picked, he studied and wrote his exams.

Fast forward to his return to school.  His first week back, he attended one of the selected courses, Chemistry, and decided he didn’t like the class (or the prof, or the vibe or whatever…)  So he wanted to drop the course to lighten his load – given that he’s taking two math courses this semester (and math is always a challenge) – this would give him more time to work on math.  Great idea…  But let’s meet with your guidance counsellor or disability advisor first just to make sure we’re making the right move.  He agreed.  And then could not get a meeting fast enough before his next Chemistry class to drop the course.  Anxiety and a sense of urgency (on his part) started to set in.

But here’s the thing…  Certainly, there are many things that we can all do on our own – but we don’t have to.  There’s absolutely nothing wrong with asking for help.

On Wednesday morning, my lower back spasmed while doing a yoga pose.  And you can bet that I didn’t hesitate to ask for help and call in the professionals as soon as I got home!!  But it took me a long time to learn this lesson – it’s NOT a sign of weakness to ask for help!!!  For a 2-3 year period when I was looking for a school for Henry, and then we began the arduous process of trying to get a diagnosis for Henry, I became slowly and more overwhelmed.  After his diagnosis, I had a crisis of sorts.  It all caught up and came crashing down.  It was at this time that I sought help – and realized and learned in the process, that I needed to ask for help.  (This is a long story and worthy of several posts….)

We ALL need help from time to time.  There is absolutely nothing wrong with getting a team together to achieve a desired goal.  How about peace of mind?  So…  Henry; and I; will continue to do it “By My Own”, with help.

Recommended Reading – Part 2

Looks fascinating!!

Looks fascinating!!

So, this is a follow up to my first post on Recommended Reading.  There are sooo many books out there – some are absolute crap – but others really helpful.  In fact, there should probably be another post on what not to read.  I find that the ones that tell us what it’s like to be inside an autistic’s brain to be the most helpful.  Here are my other Top 5 (to finish the Top 10 list – because nobody does a Top 5 list….)

  1. Carly’s Voice – Breaking Through Autism – by Arthur Fleischmann with Carly Fleischmann – This young girl is a twin and is non-verbal.  With help from her therapists and the world which was opened up with a computer, she is able to communicate what it’s like to be her.  She also writes a blog, which you can find at carlysvoice.com.
  2. look me in the eye – my life with asperger’s – by John Elder Robison – This guy did not find out he had Asperger’s until he was 40.  He dropped out of school, and worked with KISS – he developed their fire-breathing guitars.  He has a dark sense of humour, and it is fascinating to read his story.  Mr. Robison also wrote a subsequent book called be different – Adventures of a Free-Range Aspergian.
  3. the curious incident of the dog in the night-time – by Mark Haddon – I’m sure practically everyone has read this book; but if you haven’t, it strives to solve a mystery as told by a young autistic man.  Mr. Haddon worked with autistic people, and he really “gets” it.  The story is also very funny – at least I thought it was – but then, I recognized a lot of the idiosyncrasies.
  4. There are 2 books by Gabor Mate, M.D. that I thought were fascinating.  Although they don’t deal directly with autism, they do capture what it’s like to be on the fringe of society.  They are:  In the Realm of Hungry Ghosts, and Scattered Minds – A New Look at the Origins and Healing of Attention Deficit Disorder.
  5. Being the Other One:  Growing Up with a Brother or Sister Who Has Special Needs by Kate Strohm.  Siblings of the disabled face particular emotional challenges that are often overlooked.  The author conducts extensive interviews with siblings of all ages.  This particular topic is obviously worth a blog post – more to come on that….

So – that’s it – for now…

Happy New Year!!!

Guess who!!

Guess who!!

I cannot believe it’s 2015!!!  But first – a few musings on New Years Eve…

  1. Ryan Seacrest is a poor substitute for Dick Clark.
  2. All of the other hosts on the other programs featured people I’ve never heard of….
  3. I also have never heard of most of the acts that were “performing” (doesn’t anybody just sing anymore?  I’ve never seen so much lip-synching in my life!)
  4. I couldn’t care less whether or not I make it to midnight to see the ball drop!
  5. I’m not much of one for New Year’s resolutions.  I’m more of a beginning of school, September kind of gal.

I did get to thinking about resolutions that we make around this time of year.  Of course, there’s the usual losing weight, quitting smoking, getting healthier kind of fare.  And these are all laudable goals.  But why particularly, on January 1st?  Aren’t these things we should be striving for every single day?  It can also be rather overwhelming if you’re facing a goal of 30+ pounds to lose, or cutting out your regular 10 ciggies a day, or trying to start exercising if you hate it!  But I think that if you break your goals down into small, measurable steps, you’ll be surprised at how far you’ve come when you look back.

And, if you are a parent to a child with special needs, the future can be quite scary.  When we first moved into our present house 13 years ago, Henry was just beginning primary school.  Besides the fact that it felt like we jumped through hoops to get him accepted to this school in the first place, the other things that I worried about every day could be rather overwhelming.  Would he ever learn to read?  Would he ever “get” math?  Would he have friends?  Would he get kicked out of the school for acting out?  Never mind – would he ever graduate from high school, go to college/university, find a girlfriend, get a job, live on his own…. If I thought about these things, I would have driven myself crazy.  So Left Brain and I learned very quickly to only think about the things that were directly in front of our face at that particular moment.

If I could share my New Year’s resolution wish for all of those parents out there who are frightened and worried about the future, it would be:  “Deal with what you can at the moment.  Don’t beat yourself up – and don’t sweat the small stuff.”  As time passes, you might be surprised and amazed at how far you’ve come!