Things not to say to a Mom of children with Autism. Part 1.

If you are reading this, PLEASE read it with an open heart, so that you can understand why it hurts.

There are actually quite a few lists out there about this topic.  I actually wish there weren’t.  I wish that empathy wasn’t just a word.  I wish empathy would take over some people before they spoke.  Unfortunately, it doesn’t.  And we live with this almost every day.  I say we, but no one ever seems to say these things to my husband, so I will write this post solely from my perspective and my experiences.

I don’t believe these people intentionally want to be mean or cruel.  But it hurts, none the less.

So here is my list of things that I have been told.  In no particular order.

“We talked with someone who works with those kids.  They will snap out of it.”

Unfortunately, the individual you spoke with isn’t very informed about autism.  Which is sad and terrifying to me as a mother because they are currently trying to help these children based on little or incorrect knowledge, methods and practices. 

Autism is a life long disability.  Yes, they will improve, but every person affected with autism does not improve at the same rate, or to the same extent.  Currently there is no way of telling what the future holds.  To support me accept my boys where they are, and for who they are, today.  By showing them love and acceptance, it strengthens me to give them what they need.

“Oh, I worked with a boy who had autism so I know exactly what you are going through.”

Now that time has passed, I am able to respond to this.  At the time I was stunned and horrified.  Most mothers have an emotional attachment with their children.  When the child is in pain, the mother can almost feel that pair herself.  Working with someone else’s child who has a disability gives you the gift (yes, the gift) of being unattached.  You do not feel the same pain, anguish or despair because your child cannot express what they want and need.  And therefore you are able to honestly do a better job than I could at that time. 

To moms who are doing this yourself, because you have to, because there is no one there, my prayer of strength is yours. And I do not mean that lightly or flippantly.  

“I thought you were more of a go-getter.  I’m surprised your aren’t more involved!”

This was especially difficult as I had not seen this person since the boys had been diagnosed and this was the first thing he said to me when meeting.  No, hello.  No, hi.  No greeting hug. Just bam!

I look back to the first probably three months of intervention and marvel at how much progress the boys have made. And how proud I am of them.

Writing this is also difficult for me because I do not trust you enough to reveal either the extent of the boys’ struggles or the depths of my pain and fears.  This is still too raw, and too intimate.  And we have been doing this for four years.  I don’t trust you that you won’t share these things as gossip as opposed to compassion.  Essentially, I still don’t trust you.  Until you respond to my boys with any amount of effort, I do not trust you.  Until you respond to my boys with something more than, “Hi boys”, I do not trust you.  Until you respond with something other than an awkward stare, I do not trust you.  I will not let that wall down.  I will not let you in.  And by “I”, I mean I will protect my boys from you at all costs.  Your words and actions hurt me, but I will NOT let them hurt by boys.   And you will not be welcome in my home.  In their home.

That last paragraph drained me.  All I can give for now.

Thankful

Life is full of ups and downs but right now I need to be thankful for the women in my life who are my supports.  Had my yearly phone call from a friend of the past.  Perhaps she is more than a friend.  She calls me, I don’t call her.  She doesn’t hold that against me.  Our lives are vastly different, yet she is there, and I love her dearly.  She encouraged me to write more.  Not for others necessarily, but for me.  To get it out.  To have a record to look back upon and remember.  To have an account of how far we have come.  I hope this is the start of that.

My BFF Heather hears all about my aches, pains and successes in life.  She is my rock.  Appreciate her more than words.

I have other women in my life that I love dearly also.  Both have children with ‘needs’ or varying levels.  One I’ve known for a few years and though we are at different schools now, we have made a date to meet for lunch as much as possible. 

Another is at our current school and I admire her strength in God.  She is a wonderful sounding board and I can only hope that I am able to give her even a fraction of all she has given me so far.

Time Flies …

Wow.  A year and a half.  Where did it go?  Man!  Lots has changed and little has changed.  In two weeks we start Grade 2 at another school.  I decided to move the boys after our current school became less and less able to even maintain some reasonable sense of order or consistency in the classroom.  Looking back I KNOW God has a sense of humour because there is no way some of this crap happens to other people.  So on with a new school!!

Academically they are doing fantastic (this means at or above grade level).  The both still have a full-time aid due to their lack of adequate language and this is fine. Their language is expanding, but they do have a ways to go.  This is the ‘little change’ part.  And this is fine.  We are still making progress forward and this is all that matters.

I am aiming to blog more.  So we will see…

Girls??? Did you adopt???

While at the grocery store last week I ran into a friend I hadn’t seen in probably a year.  While I was blabbering on, she stopped me and asked, “Girls?  Did you adopt?”.  It was then that I realized that I constantly talk about our BI’s as ‘our girls’. 

In fact, I don’t know where we would be without them.  Honestly!  Even the ones that came into our lives and moved on (Gil, Jessica, Aly and Stacey!!!!), were invaluable both to the boys and to us as parents!!!  Then there are the ‘lifers’, Kimmy, Aimee and Angela.  OMG!  I love these girls!!!!  Our precious subs (read life-savers) Chelsey and Carly brought their vast experience and perspective that I greatly value.  And finally the ones that couldn’t get away, Halyna and Sarah, are with us at kindergarten now. 

Each one of them, masterfully guided by My Shauna, have helped mould us into who we are today.  They have taught the boys AND me so much and enriched our lives beyond comprehension.  I know I’m not accurately expressing how truly HONOURED I am to know these women and have them in our lives.

They have been there throughout the highs and the lows.  And they keep coming back!!!  I would adopt any one of them at any time.  I consider them my family.  Family by choice.

Crap.  I’m getting misty.

H

Autism - If I had to do it over again – Part 1

I am becoming more aware of how widely different each child with autism is.  And I’m not just talking between my two boys.  Each child (and family) is faced with their own similar, yet vastly different set of challenges.  I would be arrogant AND blatantly ignorant to say that I understood what another family is going thru.  Not understand completely at least.  Some of it, yes, but definitely not all.

I was thinking about what I would do differently if I had to do it over again and funnily enough, not one of the things included ‘professional’ help.  Other than the great Shauna of course.  The Guru of Autism, I think she is.  I admire her passion and creativity to stomp this thing down.  But for my part, the ‘other’ therapy, other than Shauna’s genius ABA program (with other therapies intermingled), what would I do differently when we began our ‘hurry up and get on the next waiting list’ journey.

When someone was finally able to give us an honest answer about the boys indicating that it probably was autism (thank you Sue), we started the wait list for an Autism Assessment and I put the boys on a GFCF diet.  We are fortunate enough to be financially set so the huge extra cost of the food for them wasn’t an issue.  Cutting them off Goldfish Crackers WAS an issue.

The paediatrician we were referred to seemed like a nice lady but did not instil any confidence whatsoever that she knew much about it.  She didn’t even seem to know what the GFCF diet was.  In my books, being nice isn’t enough.  Seriously!  She ordered up a battery of medical tests but didn’t explain or tell me what any of them were.  In hindsight, I should have had her explain.  In reality, I had one little boy there (Randy had taken the other to the car already), who did not want to be there and was going through her desk, much to her dismay. 

I’d love to say that I was completely on top of this whole process.  I wasn’t.  In the back of my mind I was truly hoping it wasn’t as serious as it was/is.  In a life altering crisis, your mind is never ‘rational’.  When it comes to your children’s health, you are never ‘rational’.  I don’t ever want to be that detached emotionally from them.  More aware, yes, not detached.

What the diet did for us:

Nate – craver of carbs.  Still is, but doesn’t flip out like he used to if I tell him ‘no more’.

Josh – craver of milk.  Still is, rice milk now though.  More alert.  More interactive.

We still haven’t given them nuts.  Randy has some nut allergies where his tongue tingles and his throat closes up.  Not wanting that to happen to the boys when they can’t tell us what the problem is.

The diet sucks.  But I wouldn’t stop it.  We buy most of the food for them because they (especially Nate) is still such a picky eater that new foods won’t even be tried).  I’ve baked stuff before, only to have Randy and I eat it, or it turn out so gross we wouldn’t touch it, and we throw it out.  Seriously, it can’t be impossible to make good GFCF basic food!  It is just so much trial and error.

Next up …. Methyl B12!!!!!

H

Spandex is your friend!

Should the post Christmas wardrobe leave something to be desired, remember this:  2% SPANDEX IS YOUR FRIEND!

This delightful, mere, 2% can make all the difference in fitting around the surprisingly enlarged size of your butt or that ‘muffin top’ which appeared out of no where (yah … right).

Should you be needing more ‘encouragement’ than the 2% spandex rule, also remember that a spray bottle filled with water is an even better friend!  A light spraying around those ‘suddenly snug’ areas, a few deep knee bends, and voila!  You feel almost back to normal.

No need to thank me … unless you really want to.

H

Quilting / Sewing for Christmas

I didn’t do very much this season for quilting.  Life seems to be rushing by at an extremely fast pace and most of the time I am behind.

I did manage to finish my Christmas quilt for my chaise and two improv pillows.  The first pillow took forever.  I am very much a planner and doing improv was difficult to wrap my mind around.

My picture taking ability leaves MUCH to be desired.  I would like to try more improv type quilting in the future.

H