“The trouble is, you think you have time.”

We have all heard the old saying about how time flies and before you know it your kids will be all grown up.  For those of us who have special needs kiddos, we are way too aware of how that time flies.

Don’t get me wrong, I can remember a time when I felt time was dragging, that nothing was being accomplished (toilet training would be a good example).  And at that time I sometimes wanted to pull my hair out, because the process of teaching and reinforcing the behaviors that I wanted Colby to learn could be frustrating and emotionally draining.

But now, looking back, I am grateful that I received good advice when Colby was a toddler.  That advice was, that he would certainly grow, and change and learn with intensive intervention.

As a practitioner I now am advising families who are many times in a similar situation to the one I was in when Colby was small, but often I’m not seeing these children until they are 4 or 5 years old, not 2 or 3 as Colby was when we began working with him.

For families who have children who struggle with communication, or unusual behaviors, it is often difficult to come to the realization that your child isn’t  performing at the level of their same age peers especially if this is your first child, or only child.   There’s always the story about the uncle who didn’t talk until he was 4 or the cousin who didn’t listen, or Grandma comes along and declares that there is “nothing wrong” with (Billy, Suzy) they just don’t want to do what the other kids do.

Unfortunately, more often than not, there is something that is holding the child back from being able to learn things in a typically developing way, and delay of intervention can result in less than desirable outcomes when families do access service.  The earlier a child can access services that bring him/her closer to the developmental level of their peers, the better they will do in school, the community and home settings.

Intervening early helps the child to learn without having a long learning history of  behaviors that are not going to serve them well in the long run.  For example, a child who points to things and grunts, or drags their caregiver to the pantry pointing and screaming while the caregiver picks up one item after another to determine what the child wants, is not communicating in a way that is going to serve them for very long.

Parents often say “Well, I know what he wants” – my response is “So what if you get hit by a bus? Who will know what he wants then?”  Seems pretty harsh, but it is true, the very best we can do for our children is to teach them how to be independent – as independent as they can be.  This is a tough one to learn as a parent, we are so used to anticipating our child’s needs, answering for them, that we forget that they have their own voice, and we become slaves to rituals and rigidity that we would never tolerate in any other child.

We have pretty much 18 years to get it right, maybe 20, maybe more in some cases – but just like the child we prepare to go to university or out in the world on their first job assignment – we need to prepare our special needs child for that same eventuality – that we won’t always be there.

18 years seems like a lifetime when your child is 3, but before you know it, it’s gone – take it from someone who knows how quickly it passes – don’t waste a moment.

 

Sorry, we are all out

The current state of Autism treatment in Saskatchewan reminds one of the Monty Python Cheese shop skit.  Whatever you ask for – they are either out, you don’t qualify, or you are forced to jump through hoops to receive it.

Parents in the province can pay for private services (if they can afford it), can access Health Region services, (if they don’t mind waiting for service that is inadequate and requires them to take a parent training course offered in the middle of the day by “lightly” trained staff.) Or if by some chance the family qualifies for CDS funding, SURPRISE! They can’t get that either because the parents are charged with proving an “unmet need”.  Which you would think would be simple considering the options available, but in truth is nearly impossible! (more to follow on that subject!)

If only parents would get as angry as John Cleese does in the Cheese Shop skit when they realize that a handful of preschoolers in the Saskatoon Health Region are getting 25 hours a week of evidence based treatment (ABA) PAID FOR BY THE GOVERNMENT!

Sure, your child (under 6) will begin to recieve $4000 per year toward programming that you can privately access starting in April.  But if I were the parent of a preschooler – I would say this stinks like Limberger….

The time for change is now.

I recently had the opportunity to attend a National Autism Leadership Summit in Ottawa hosted by CASDA (Canadian Autism Spectrum Disorders Alliance).  There I met with individuals from across Canada who are working to improve services and treatments in their own provinces.  A more excited, passionate group of people would be hard to imagine. A good number of these people were parents who, frustrated by the services available for their kids, took the initiative to do something to make things better.

When people found out I was from Saskatchewan, the first thing they asked me was, “So what are services like in Saskatchewan?” Me:  “Ummm.. our government spends 7.5 million a year on treatment and services…”  (Insert stunned silence) Them: “Oh my god, that is brutal!” Me: “Yep”

The fact that we are so far behind in treatment and services because of lack of funding is not news to me – I have been researching this for a number of years – but  most people in this province don’t realize how insignificant the funding is let alone folks from outside the province.

It is time people.  It is time to spread the word that we are not going to take only what the government is currently willing to give.  It is time for parents – yes, parents to group together in one strong voice to make the government understand that we are not going away.

Parent Advocates for Autism Treatment in Saskatchewan is a group dedicated to making real and lasting change in this province for individuals with ASD.  You can find us on Facebook at PAATS or on the web: http://www.parentadvocatesforautismtreatment.com

PAATS

Love is in the air….

Colby has a crush on a girl in his class.  I couldn’t be happier.  He is 13 and at this point is so innocent about liking a girl.  He tells me he loves her (Miss B we will call her for privacy sake) .  “I love Miss B, Mom”.

I’m not sure exactly how Miss B feels – though it does seem that she likes him too – evidenced by the way she smiles when she sees him.  Miss B is non-verbal, but has her ways of showing her likes and dislikes.

I am especially happy that Colby has chosen one of his classroom peers to favour – not some typical peer who might feel “weird” by having the attention of my interesting and unsual son.

I have in the past, thought fleetingly about what love might look like for Colby in the future – but I wasn’t sure I wanted to go there.  I was worried that he wouldn’t find it, and that if he did, it might disappoint.

But isn’t that what we think about all of our kids?  Typical or not, we don’t ever want their hearts to break, or to be disappointed.   But that is life.

All we can do is support and love and guide.  Gulp! here we go…..

My Kid Is Not Autism

The debate about whether Autism should be “cured” or not is one that runs rampant on social media.  One camp made up of parents, caregivers and families usually, who try everything to help their children with Autism lead a “normal” life.  Then there is another camp, made up of parents, caregivers, and most often high functioning Autistics who are appalled at the idea that they, or their children need to be “cured” of Autism.

I am in the camp of “cure” (not that I think that it can be “cured” but I do believe that life can be improved with proper and intense intervention).  My own son is who he is I believe, not because of his Autism, but in spite of his Autism.  His sweet and loving nature has always been there, his curiosity, his love of music and dancing.  What continues to trip him up is the other side of the coin, repetitive speech, restricted interests, inappropriate social behaviour.

Everyone who knows my son knows this about him.  He is not Colby the kid with Autism, he is just Colby.  But that doesn’t mean the Autism isn’t there.

If I could wave a magic wand and eliminate the behaviours that hold him back, that limit his ability to be as independent and socially concious as he could be – I would do it in a heart beat.  That in no way means that I would want to be rid of Colby, I know who he is, but it is those symptoms that take over and have often gain him negative attention, stares and avoidance of other kids that I wish with all my heart he didn’t have.

Colby loves his clothes!

Is this the right room for an arguement?

As a Behaviour Analyst and the parent of a child with Autism, I often find myself on two sides of the fence.  The side that is giving advice about treatment, and the side that is receiving advice about treatment.

I would like to think that I can be sympathetic to both sides, but sometimes I run into a situation where my sympathy wears a little thin.

Take a phone call that I received the other day.  A man called to say that his son had just been diagnosed with Autism  (boy is a teenager) and that he didn’t know what to with him.  “Ok”, I said – “what is going on?”  Him – “Well, it is his attitude!”    “Ok”, I said, “Specifically what is going on?”  “Give me an example.”  Him- “Well he just won’t listen!”  “Ok”, I said, “What motivates your child?” Him- “Nothing, nothing motivates him-all he wants to do is play video games!”  “Ok”, I said, (maybe a little less sympathetically) “So your son is motivated by playing video games.” Him – “Ya, but what good is that?  What damn good is playing video games?” Me – “Well, I am suggesting that maybe you could restrict his access to video games until he does what you ask him to do – then when he does what he is asked – he is rewarded by access to his video games.” Him – “Ha! that isn’t going to work, he won’t listen to me!”

You get the idea.  This conversation (and I use that term loosely) went on for another five minutes where I learned that the child has been to a psychiatrist, pyschologist, and doctor – who according to the parent told him that “there was nothing he (the doctor) could do with him” (the boy).

Since I was in a conversation that was going completely nowhere, I had to admit to the parent that it was unlikely that I would be able to help.  The parent heartily agreed, and we hung up.

I felt really bad. (For the kid). And frankly for the parent too, as he had given up on his child.

Don’t get me wrong, I have been the parent who rolls their eyes at the suggestion of some treatments for my child (sorry brushing therapy and weighted vests sigh!).  But have at least offered to let them try if they are willing to take data and do a reversal design to confirm that the treatment is working. Is science too much to ask? 🙂

But in all seriousness, without trying interventions that my help our kids, we are denying them the opportunity to make changes that could really improve their quality of life.  Sometimes these interventions seem daunting, an incredible amount of work for parents and caregivers who are already over- tired, over -stressed, and over – done.

All I can say, is experience has taught me that doing nothing will acheive exactly that effect – nothing will change.  Our kid’s behaviour won’t improve, their communication and self help skills won’t improve, and things might degenerate and get a whole lot worse as the child grows.

Sometimes, we as parents have to be more optimistic about what our kids can acheive.

There is a good book on this by V. Marc Durand PhD. (Available on Amazon)

School Daze

Colby Loves School!!           

Ahhhh two weeks until school starts, the time of year that strikes dread into the hearts of children and teachers is also the time of year when parents breathe a sigh of relief and fist pump down the aisle of Staples and Walmart gathering an enormously complicated list of school supplies.

For those of us who have special needs kids – or work with special needs kids – we need to prepare for the IEP meeting, that hopefully will happen in September, but sometime doesn’t happen until November….. don’t get me started. (My son’s teacher takes care of it first week of school – so I am judging my an excellent standard).

I have been thinking about this a lot – especially with regard to some of the children I work with in at home programs.  Often, what we are seeing at home, is not what the school is seeing with regard to the child’s performance.

At home, we tend to focus on the child’s needs from the perspective of what is practical and useful for the child on a day to day basis.  Communication skills, self help skills, socialization are some of the big ones.  Unfortunately, these aren’t always the same kinds of goals that the education system deems to be appropriate.  

For example, why is it important for my child to recite numbers from 1 to 100?  Unless you are counting something – what would be the use of that skill going forward?

What about writing?  Kids now have access to technology that allows them to type even if they don’t have the manual dexterity to use a pencil – is keeping them from using this technology holding them back academically – in some cases – yes.

Then there is the sensory minefield.  (insert eye roll here)  I am completely sick of having some expert hired by the school division inform everyone at the table that the child is “unregulated” (regulation apparently has nothing to do with bowel movements – I think it was an honest mistake!) Anyway, I have no doubt that children have sensory issues, but why are that child’s sensory issues only evident at school?  Why don’t we have to swing Johnny for 20 minutes before each session that we work with him at home?  Why is his weighted vest used only at school?

 Each time that someone has suggested a sensory intervention with my son, I have told them that if they can collect some base line data, use the intervention and collect that data, then do a reversal that proved the intervention works I will happily approve the intervention.  So far, no takers. (For more information on sensory processing disorder check out http://www.asatonline.org)

I’m not trying to dump on other professionals – but as parents of kids with disabilities – we need to take an active role in what is being done with our kids, day after day at school.  If we don’t, we can’t help educators to help our kids.  We need to be realistic – but optimistic, and know that all kids have the capacity to learn at whatever level they are at.  Also  to make sure that our kid’s days are not spent in a “sensory room” or shredding paper or whatever it takes to get our kids out of the hair of the classroom teacher.

So get out there!  Take control of your IEP or PPP or whatever the heck they are calling it this year, and keep requesting those goals that will help your child grow – whatever their needs>

A Tale of Two Cities (kiddies)

I belonged to a Mom’s group when my first son was born – we met through the Health region every week for a couple of months, and after the program was over, we decided to stick together because we enjoyed each others company so much.

We were all new Moms, ranging from early 20’s to a couple of us oldies who were in our mid 30’s.  Every week we got together to commiserate about our babies, husbands, and life in general.  We were a pretty tight knit group and relied on each other for babysitting, great advice, and a lot of laughs.  We got together at each other’s houses once a week, and once a month went out for an evening together that we called Mom’s night out.

All was well for me in this group until it became clear that my son was not keeping up with the other kids.  There is nothing as humbling and scary as seeing 9 other little ones walking about, beginning to chat and play while my son sat in the middle of the floor.  It was, in fact, painful at times and I began to make excuses now and then about why we couldn’t attend.  I was angry at myself because I felt a little bit ashamed of Colby, and there was no one to talk to who could understand my feelings.

One night, while out with the Moms, the subject of having a second child came up.  One of the girls turned to me and said “Would you have another child if you thought they would turn out like Colby?”  Instinctively I said “No.”  Immediately, I regretted it.

I went home that night feeling very down, and very angry at the person who had been so insensitive, but mostly I felt ashamed of myself, that I had betrayed my beautiful, darling son by as much as admitting that he was somehow less.

Checking in on my sleeping boy that night, I vowed to him that I would never, ever let anyone make me feel like he was less, and that I would never, ever consider him to be less.  I cried by his crib for half an hour, so sick with shame and self loathing for not putting that person in their place.

When I did become pregnant with my second son, it never occurred to me to be fearful that things wouldn’t be perfect.  My husband was upset at first – worried that we could possibly have two children with special needs- but that passed quickly.

Colton was born in November of 2003 – 27 months younger than Colby.  Colby was over the moon in love with his baby brother.  Just barely walking three months before his brother was born – and saying maybe 5 understandable words – I could hear Colby coming down the hospital hallway saying “baby, baby, baby” then plunked himself down in a chair and held out his arms to hold his little brother.

Colton proved to be the most delightful little baby, he just did everything right – he ate lots – (nursed like a champ), slept like a log, and was happy all day long.  I called him “Angel boy”.  And having him added to our family has been the best decision ever.

Colton 6 months

Great Expectations

Sometime in the summer of my 34 th year it hit me like a ton of bricks, I wanted a baby, and I wanted one NOW.

My husband and I had never really discussed having kids,  we were always too busy with travel, adventure, work.  But I think we both knew it was time for a change of lifestyle,  and so we agreed.  I got pregnant immediately, and was thrilled.  We spent the next 9 months anxiously awaiting the birth of our boy who we had already named Colby.  The  birth was not an easy one – Colby was already a week late, but after an emergency C section we were happy to hold our boy.

He was a little yellow (jaundiced) and his feet were really scrunched up, (as if he had been pretty uncomfortable for a while!) but his APGAR  score was good, and we were instantly in love with him.

We talked about how he would become a doctor, or a race car driver (I ordered him a baby sized fire suit from England) and we planned for an amazing, full life for our little boy.

The first few weeks were a blur of sleepless nights and trying to get used to nursing.  As it turned out, Colby was not a breast man, so we went reluctantly to a bottle and he began to grow and thrive.

He was a happy little guy, didn’t sleep very well ( but what baby does right?)  He seemed to have trouble breathing if he was laying flat, so we propped him in his bouncy chair, or held him so he could get some sleep.

It wasn’t until he was about 6 months old that we began to notice that he wasn’t keeping up with his same age peers.  He was the last one to sit up, then he wasn’t standing, walking.  He bum scooted his .way around from 13 month old and on until he was 2 when he began to stand and walk.

He didn’t talk.  Other kids were saying “cracker” and “Dora”.  He didn’t protest when other mobile kids snatched toys from him or pushed him over.   Something was wrong, that much was clear.

The  pride and joy we felt for our son was being eclipsed by a gut wrenching terror.  And thus began the journey that we didn’t expect, that we couldn’t have predicted in a million years,that made our previous physical and mental accomplishments seem like child’s play.  We were the parents of a special needs child.