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?