The Ups & Downs of Progress

Let me start by saying that I am honestly thrilled for every step forward my son takes.  Truly thrilled!  However, there are some of his not so “normal” traits that I never want him to lose.

This realization hit me a short while back when yet one more playschool mom informed me that her daughter planned on marrying my son.  I laughed and said that she’d have to get in line as he seems to be amassing quite a group of girlfriends.

I shared this cute little anecdote with my husband that night who commented, “That’s sweet.  I wonder why all these girls are in love with him.”

Aside from the fact that he is the best looking little boy ever, in my humble opinion, “It’s probably because he doesn’t pull hair and tell them they have cooties like the other boys.”, was my response.

It was a simple comment that really got me thinking about what other “normal” little boy things he doesn’t do; and that I don’t want him to do.

He doesn’t reject affection from me

As he nears six years old, my boy still climbs up on my lap to snuggle.  He still asks to be picked up and held.  He still loves lots of kisses and tight hugs.  I realize that this alone doesn’t make him unique from most others his age, but he even allows and welcomes this in public.  There’s no, “MooOOOoomm, my friends are watching!”

He doesn’t tease or bully

He loves to play with other kids and we are working hard at learning how to ask kids to play with him.  He doesn’t discriminate as to who he does and doesn’t want to play with.  He may not pursue a relationship with someone who’s been mean to him in the past, but aren’t we all like that?

This does not mean that he is a perfect boy, he still fights with his sisters over who’s turn it is or who gets that toy, etc., but I’ve never seen or heard him call anyone a bad name or refuse their friendship because they don’t measure up to his standards.  He won’t always accept the invitation from other kids, but he’s not mean about it.

He is genuine

My son will not craft a fake persona to take advantage of a situation.  He won’t act nice to you then badmouth you behind your back.  He is who he is and he likes what he likes.  Perhaps he could be a little more subtle in his declarations of what he doesn’t like, but that is another area that we are working on.

 

As parents of young ones, we long for our children to grow up and get to the next stage (potty training, school, not needing a babysitter, and so on) all the while lamenting the loss of innocence and hard life-lessons which they endure along the way.  I remember my mother telling me a few years ago that the hardest part of having grown children is that you can no longer fix their hurts with a simple kiss and hug.  Those are days that I do not look forward to.

I’ve always said that my biggest problem with autism is that I don’t want my son’s life to be any harder than it needs to be, but somedays I wonder if maybe there aren’t harder times he may be able to avoid?  I realize that the last statement is simply a mother’s hope and not a fact.  He’ll still endure hurt and pain, regardless of autism.  But don’t we all wish we could just keep them in the bubble just a little longer?

 

Wendy

 

No Sibling Left Behind

Raising a special needs child is difficult.  Raising more than one is difficult.  Raising a special needs child while trying to stay “fair” to his neurotypical siblings…almost impossible.

That’s right, we have a slightly more sensitive word to describe the siblings of children on the spectrum.  Neurotypical is preferential to calling them our normal kids.  Naturally, that implies that our ASD child is abnormal and that’s not a path we want to venture down.  So we say neurotypical with a slight awkwardness, but it’s the best phrasing that we have right now.

Whatever special need your child may have consumes significantly more time, financial and emotional commitment than their siblings require.  For those of us with children on the spectrum, it’s often an invisible cost as you don’t see the appointments the same way you would see a wheelchair or other equipment.  Knowing the financial toll this takes on us gives me an extra-large dose of sympathy for the parents that also have to invest in equipment and/or medication for their children.

So what is the cost?

Appointments.  Getting there (especially if you are not right in the city) demands fuel and wear and tear on your vehicle.  It costs us time away from work and/or childcare costs for siblings.  We have been fortunate enough to have friends step in to help us with the childcare, which we are so very thankful for.  Depending on your other children, you may or may not be able to bring them along as all your attention needs to be on the appointment itself.

Therapy.  So far we have been blessed enough to have not had to pay for our son’s therapy.  However, he is quickly aging out of the free stuff and any further therapy will be out of pocket.  It’s expensive and waitlisted, but we will do what we have to do to keep him moving forward.  So the renovations take a back seat.  The old vehicle gets limped along rather than replaced.  When your child is Autistic, his progress is more important than the other stuff.

Home therapy.  We homeschool, so we spend time teaching all of our children, but our son gets extra time because he needs extra time.  We include his sisters when we can.  Especially when it comes to social and life skills.  Some of it, though, just has to be one on one.

Emotional investment.  Naturally, we are emotionally invested in all our children.  But our son needs more.  If we are out and about we have to plan around him (we can’t go anywhere overstimulating or with people in costumes, etc.) and that’s not always fair to the girls.

We’ve talked a lot about how great it would be to take our kids to DisneyWorld; but for the foreseeable future it is not an option.  Our son is TERRIFIED of mascots/people in big costumes.  Spending time with friends on farms or acreages requires a tight leash on the kids because of his propensity to wander.

Then there is the exhaustion that comes with sleepless nights, emotional days, and the overall alertness that we must have to all of his surroundings.  So who gets the short end of the parental stick?

His siblings.

We do our best to balance everyone, but many days our best feels lacking.

Our oldest has many responsibilities that most 7 year olds don’t.  If we’re at the park, she has to help keep an eye out for him.  If she gets a talking toy as a birthday gift, she can generally only play with it when he’s not around (sensory issues).  Lately, he even wants her to fall asleep with him most nights – although that one is her choice.

So, how’s a mom to balance it all?  An awful lot of prayer, for starters.  For God to help the girls to understand their brother’s needs and be sensitive to them.  To not feel jealous or resentful.  And for wisdom for us as parents.

From time to time, I have special trips with our oldest.  We’ve done girls weekends away with family.  We’ve done spa days (haircuts) or lunch dates.  Last year we even saved up to fly to my hometown to attend a friend’s wedding.

These gestures certainly help, but are also easily forgotten when she’s feeling neglected.  She sometimes needs to be reminded of the freedoms that she gets and her brother doesn’t.  I’d love to sit here and tell you that we have it all figured out and are doing a great job of balancing all 3 children, but that’s simply not the case.

As any parent, special needs or not, we are doing the best we know how to at any given moment.  That’s about all that we can do.

So It Begins…

My mother told me once that you never stop being “mom”, it’s just that when the kids get bigger you can’t fix their problems with a hug and a kiss anymore.

 

As a parent of young children, I love that for the most part I can still kiss away most of their biggest life problems.  Some days, I AM my oldest daughters’ biggest life problem!  Don’t call the authorities on me, but she has to pick up after herself – and she’s the only kid in the whole wide world with such a burden to bear.  Her brother and sister NEVER have to pick up their toys; she has to do ev-er-ee-thing!

Mom – stop laughing!  I was never THAT dramatic…was I?

My magical, healing kiss still cures the worst of the booboos.  A hug can generally stop the tears.  And on the odd occasion when the hurt is more than mom can handle, we call in the specialist.  Dad.  No surgeon matches his skill level when it comes to removing splinters and the like.

I know that these days are fleeting and therefore I cherish them.

My mother told me once that you never stop being “mom”, it’s just that when the kids get bigger you can’t fix their problems with a hug and a kiss anymore.

I pray against the days when my kids suffer their first broken hearts, betrayal by a friend, not getting the award they worked so hard for, etc.  I also pray that they are not the heartbreakers or betrayers.

As the mother of a special needs child, there is another day coming that I dread.

I so clearly remember the day I stood in my front yard with my cousin as he threw rocks at the girl across the road and called her a retard.  I also remember telling him to stop.  She and I were in the same grade throughout school and became friends after that.

It’s not that I’m ashamed of myself for that time because I didn’t participate in his awful behaviour.  The problem is that now I am so afraid of my son being the lone kid across the street having rocks and ugly words hurled at him.

Times have changed, you say.  We’re more educated and less judgemental about special needs now, you think.

Are we?

People blame vaccines, environment, and just about everything else they can for why these babies are the way they are as if they are some kind of punishment or error.  We want a reason for whatever is “wrong” with these people!  It may not be a literal rock, but our words can cause damage that six weeks in a cast just can’t heal.

This summer, I had the privilege of helping out with a fun children’s event as a group leader.  There was quite a bit of activity and excitement and my son got a little overwhelmed.  That’s when the moment I’ve been dreading for 5 years happened.

This boy, a few years older than mine, grimaced and said, in that snooty little voice, “What’s WRONG with him?!”

After taking a second to retract my mama bear claws, I was thankful that another child needed me and I didn’t have to answer that question.  The remainder of the event was tainted with the same attitude.  “Why can’t he talk?”, “What’s his problem?” and so on.  To be clear, these were not the poorly worded inquiries of a genuinely curious little scamp.  These were the snotty, judgemental slurs of a little boy who thought the world revolved around him (as evidenced in his comments to and about everyone else, and his behaviour whenever he didn’t win a game).

So, what’s a mom to do?  I didn’t sit him down and explain that my son’s brain just works differently than his own.  I didn’t have time.  There were 6 other children needing my help at the same time.  None of these other 6 children had a problem with my son’s behaviour.

So we got through that day, but what about the days to come?  I can’t keep my boy in a bubble.  Our goal as parents for him is to do whatever we can to make him as self-sufficient as possible.  To enable him to be an active and contributing member of society.  As much as I detest the thought of it, that also means teaching him to deal with the verbal slings and arrows.  To see himself as a child of God, and not as a diagnosis or blight on society.

From my perspective, I’d rather you ask us the genuine questions than make assumptions.  Don’t walk on eggshells in fear of causing a meltdown.  Not every meltdown is sensory related; sometimes he’s just a brat like any other kid.  And quite frankly, each kid on the spectrum has a different set of triggers which may change day to day.

Use a little common sense, of course.  Don’t blow a whistle as loud as you can right by their ears – but don’t do that to anyone!

Personally, when I take my son for therapy, I am sure not to wear perfume or scented products; but that’s when I know that I’ll be in a building full of people with sensory issues.

And if you’re not comfortable enough to not ask me about my son, then just don’t.  Treat him like a kid and we’ll all get along just fine.

And can you do me one more favour?  Teach your kids that whatever the other kids’ differences are, they’re all still people who just want to be loved.

Wendy

How Did I Get Here???

There were so many days that I was tempted to quit. The only reason I hung in there was because I knew that giving up now only meant that I had to start starting over again.

Hello again – it’s been awhile.

Several of you have been asking where I’ve been these last two months and the short answer to that question is; on another adventure.

Generally, a response like this would conjure up images of travel, education, or some epic and emotional learning curve.  Perhaps building a new house or travelling the lecture circuit or rising to some level of fame.  Discovering some long-lost relative who admires my pluck and has decided to leave us a vast fortune.

Those are all lovely thoughts which, for me, would have to begin with “Once upon a time…”.  The truth behind my absence is this:

Potty Training

Rather anti-climactic, isn’t it?

My son turned 5 in May and previous attempts (and there have been many) to train have led to nothing but frustration and tears.  All mine.  He couldn’t have cared less about it, hence the frustration.

I’ve talked to his therapists, I’ve read every blog and case study I could get my hands on.  I bribed him with everything I could think of and nothing worked.  I put the potty in front of the TV and played an endless loop of YouTube potty training videos.  It never worked.  He just didn’t care.

If one more person told me that “No one ever graduated high school in diapers!” I was going to snap.  The truth was that I didn’t believe that this statement would necessarily hold true for him.

Then, approximately 6 weeks ago, I woke up one morning with the realization that we were out of Pull-Ups and the determination to NOT BUY MORE!

His currency is the iPad, so that’s what I used.  You want the iPad?  You sit on the toilet.  The first couple of weeks we got some incidental successes, but still plenty of accidents.  At this point, my 2-year-old decided that she wanted to play the iPad too so she also wanted to sit on the potty.  I didn’t expect much from her, but hey – who am I to argue???

It was around this 2 week mark that I had my first major breakdown…at church.  Yes, it was embarrassing, but I was just so exhausted by this whole process with seemingly no light at the end of the tunnel.  I believe that my exact words were, “Potty training is kicking my butt!”.  Not my highest point.  However, it was a turning point!

I know that those who witnessed my tantrum prayed for us.  I know my Mom was praying too.  She was my cheerleader through this all.  If you’re reading this, mom, you already trained 3 daughters, and now you had to train one of them to train – thanks for sticking it out with me!

It was around then that the successes became more intentional and frequent.  My son now just goes to the bathroom himself when he needs to and my daughter is able to come tell us when she needs to go!  Two weeks ago, tomorrow, I brought the last diapers from my house to our church nursery.  I may or may not have done a happy dance the whole way!

So what has this whole process taught me?  Besides the fact that I loathe potty training – wait, I already knew that from my first child – that some of the best things in life are hard-fought for.  There were so many days that I was tempted to quit.  The only reason I hung in there was because I knew that giving up now only meant that I had to start starting over again.

I have other mountains in my life to climb; many of them I have started and stopped before.  Some of them more than once.  That second (and subsequent) start is always more difficult and the defeat seems to come faster and more easily each time.

I determine to persevere.  I determine to let God have control over each circumstance.  Yes, God cares about potty training too!  There were times when I felt disrespectful talking to Him about something so, so, uncivilized…but He cares about EVERY detail of our lives.

I will enlist more cheerleaders and I will be a cheerleader to those who need one.

What mountain are you facing?  Have you faced it before?  Don’t be afraid to tell people what you need from them as you climb.

“Honey, I know you love chips but while I’m trying to get healthier, I need you to not bring them into the house for a while.”

“I need you to remind my why I started.”

“I need a hug.”

“I need you to just be positive.”

You’ll be surprised how appreciative people will be of your honesty.  We all want to help each other, but we don’t all know how.  I’d be devastated if my well-intentioned but counter-productive words tripped up someones progress.

Face that mountain and take the first step.  Just one. Don’t worry about the next step until you’re upon it.  You’ve got this!

 

Wendy

The Beauty of Belonging

Have you ever been in a room with total strangers and still felt more relaxed and comfortable than with people you know?

It happened to me on Thursday.  I took my son to his therapy session at the center and as soon as we pulled into the parking lot there was just a peace that came over both of us.

As we entered the building I didn’t have to hastily grab his hand so he couldn’t run back out the door.  He talked to and counted the fishies in the tank as I checked in at reception.  The nice lady told us to follow the green feet to our waiting area and my son took her at her word.  His head was down as he bounced from footprint to footprint, almost crashing into people a few times…but here’s where a good morning turned great.

Those people he almost crashed into?  They smiled at him…and me!

They didn’t frown at him with a “careful there, kid” actually aimed at me.  They didn’t cast judgmental glances at either of us.  They didn’t offer me advice on how to discipline my son.  They just smiled and said, “Good morning.”

In the waiting area were two other mothers with their sons.  We exchanged greetings and smiles and turned our attention back to our boys. It seems pretty normal, maybe even a bit rude to not engage in a bit of small talk; but it was wonderfully freeing.

My son loves to bolt away on me and those who know me well know that if we’re out and about I will maintain a conversation with them to the best of my ability, but I will constantly be scanning to make sure he is still nearby and safe.

The situation was the same on Thursday, but I didn’t have to explain myself.  One of the other moms was sticking very close to her boy to make sure he didn’t end up on top of a toy about to jump off.  Mom number 3 was watching her much younger son pull himself up on the furniture and take a few steps.  Her hands were constantly ready to shield his head from bumps with his very frequent falls.

None of us demanded explanations.  None of us shot the glance that told each other to lighten up.  None of us asked, “So what’s wrong with your kid?” (yes, people do that).

As the littlest boy hung on to the big round coffee table for dear life, my boy walked around it tracing the edge with his finger.  As he got close to the little one his mom looked at me before I could even tell my boy to be careful or go the other way and said, “It’s okay, they can just work around each other.”

And they did.

It was that exact moment that my heart soared as I realized that this is our tribe.  These people with similar circumstances asked nothing of us by way of explanation.  We all just got each other.

If you have a child with special needs, you know how beautiful these moments are.  Moments where they can be themselves and not a label or diagnosis.

I had coffee with a friend this morning.  This particular friend has been one of my son’s favourite people since day one and continues to be so.

She is another one who just allows him to be who he is and she embraces his uniqueness without trying to “fix” him.  She also doesn’t let him get away with bad behaviour on her watch because she knows that he knows better (just like every other kid out there who tests boundaries).

These beautiful moments pop up from time to time and I thank God for each and every one of them!

On Valentine’s Day I dropped all 3 kids off at the free babysitting night that a church in town put on as a gift to parents.  When I went to pick up the kids, I had a brief conversation with one of the supervisors who also knows my kids from daycare.  She mentioned that during the movie my son was walking back and forth under the screen but she made sure that none of the other supervisors tried to pull him down as that was just his way.  He wasn’t being loud or disruptive, he was just doing his own thing.

In our church, basically every Sunday, most of the people will keep a subconscious eye out for my son.  They do this because they know that he is a runner and chances are that at any given moment me or my husband will come looking for him.  Without us saying a word, we often get a, “He went that way.”.

These moments make my heart smile.  These moments sustain me through the more difficult moments.  These moments remind me that God is good and that He cares about us and that my son will be okay.

These moments are a gift and I cherish each and every one.

 

Wendy

When Help isn’t Helpful

Remember when you were in grade 12 and everyone was giving you advice on what to do with the rest of your life?  What school to go to, what career to pursue and so on?

Or when you were dating and people who cared about you tried to advise you on who to go out with and who not to?  How to behave on your first date or when you meet his or her parents?

Then you eventually settled down, got engaged and started planning the wedding.  “Oh, not those flowers!  Great Aunt Ida is allergic and even though she probably won’t attend she might and we’d hate to give her an attack!”

“In my day, we didn’t register for such extravagant gifts.”marriage meme

“You’re choosing that song to walk down the aisle to?  Are you too good
for The Wedding March?”

Then you weren’t even out of the reception before everyone starting telling you how to be successful in marriage and when babies should come.

And then the babies start coming…and the advice flows freely once again.

“Don’t eat that when you’re pregnant.”

“Just rub a little whiskey on baby’s gums to soothe the teething pain.  Helps baby sleep too”

 

I’ve heard it all, and so have you.  If I’m honest with myself, I’ve probably even dished out some of this one of a kind, well-meaning advice.  If I’ve ever been this “generous” with you, I’m sorry!  To my nephew who graduates this year, I’m extra sorry because I know that while telling him to ignore everyone and figure out what he wants for himself, I’m pretty sure I’ve thrown some of my own wisdom (and I use the term loosely) into our conversations.

Most of the time, these “pearls” are annoying.  In certain moments they can be downright maddening.  However, I truly believe that in most instances, they are given with the very best of intentions.

My first baby was a petite little thing.  After 5 days of struggling, both she and I got the whole nursing thing figured out.  She continued to grow and develop, but not fast enough for some people’s liking.  I was told often to put her on formula because she was starving to death.  She had regular checkups with the Doctor and Public Health Nurse, both of whom assured me that she was right on track.  I continued with what I thought was best and she is a thriving 6 year old.

My second baby took to nursing immediately, but wasn’t gaining weight.  At 6 weeks he was below birthweight so the Doctor and I both thought it best to put him on formula.  He began to grow and thrive and I felt confident with my decision.baby meme

Would you believe that the very same people who told me that my daughter was starving and should be on the bottle told me that my son was being cheated out of the benefits of breastmilk and if I was any kind of mother I would be nursing him?!

I’ve always been a heavy girl.  I’ve had more “helpful” advice on that subject alone than one blog can handle!  “Do you really need that?” can be one of the most destructive phrases to utter to someone who already struggles in this.  You want to know how I feel when someone says that to me?  It does NOT make me want to put down the piece of cake and hop on the treadmill; it makes me want to eat all the remaining pieces of cake…with ice cream.

When people first heard that I had met this guy online, I was cautioned continuously that he was probably a serial killer.  I assured everyone that I was being smart about it and wasn’t meeting him in the middle of the night at an abandoned warehouse.

Not everybody agrees with the way my husband and I live our life.  Certain people have made that very clear!

One family member has suggested more than once that my husband work up north for weeks at a time to make more money.  We have discussed this and decided that our time together as a family is more valuable to us than a bigger paycheque.  I have friends whose husbands work away for stretches and that works for them.  They have made the best choice for their family.

Then we told a few people that we were trying for baby #3.  “You’re crazy!  Three is the hardest number of kids to handle.”

“You already have a boy and a girl, why mess with the perfect family?”

“You’re going to homeschool???? Aren’t you worried about socialization?”homeschool meme

“Homeschooling will make your kids resent you! I could never do it.”

“Maybe if you were a little harder on your kids….”

“Maybe if you weren’t so hard on your kids…”

You’ve heard all the lines, you’ve probably even uttered one of two of them.  You’re just trying to help.  I know that and that’s why I can usually just force a smile, say thank you, and pay my kids to cry make an excuse to leave quickly.

I mentioned in a previous post, that we started seeing the signs of Autism in our son from the beginning.  Others saw it too and tried to point them out to us.  This is where the “help” can be especially hurtful.

Coming to terms with the fact that your child may not be “typical” is one of the hardest things a parent can do.  It has nothing to do with loving your child less, or being ashamed of them.  It has everything to do with knowing how difficult life will be for someone so innocent and fragile.  It has everything to do with your fear that you are not going to be enough as a parent to give this child everything he or she needs to have the best life possible.

Can I offer some well-meaning advice to you (the irony is delicious)?

If you know someone in this situation, please don’t point out the “obvious signs”.  We see them, we know.  We are kept awake at night worrying about our child’s future.  What we need to hear is that our child is cute, and perfect (because every person is a miracle!) and that you love them.

When that diagnosis comes, an “I told you so” or “I always wondered” can be downright harmful.

“Okay.  He’s so lucky to have you guys as parents.”

“How is everybody doing with this information?”

“I love you all.”

Those are the things we need to hear.

We’ve already read every study.  We’ve already looked into the latest miracle treatment.  Yes, we’d love for you to babysit once in a while so we can get a break.  No, you don’t need to try to “fix” him while you babysit.

I know you mean well.  I know that you have never intended for your words to wound.  I know that I would be heartbroken to find out that my “help” was hurtful to someone I care about.  So, I resolve to watch my words.   Better yet, to have significantly less words in most circumstances.  I promise to do my best to ask you what you need instead of telling you.

I’m not going to be perfect at this, but please forgive me.  You know that I mean well!

 

Wendy

 

I’d love to hear some of your favourite pieces of advice; either given or received!  Please leave a comment, and remember to keep it respectful.

 

 

Navigating the Spectrum

It will be six months tomorrow.

For half of a year, my son has officially been autistic. So much and so little has changed in six months.

I can still so clearly remember the day of the diagnosis. I remember getting back into the van and going out for lunch before heading home. I remember how hard I had to work to hold it together and how shocked I was about how shocked I was.

We picked up a few groceries since we were in the city and I wanted to buy my son a toy, a treat, something. I don’t know why I needed to do this so badly, it wouldn’t change anything. Maybe it was because I felt so helpless as a mother right then and that was all I felt like I could do.

The ride home was quiet. I was so ashamed of myself for having to struggle not to cry. What kind of terrible mother gets so upset about something like this?!?!

He didn’t have a terminal disease. He didn’t have a degenerative condition. It was just autism and it could be so much worse. And wasn’t I expecting this? I knew this diagnosis was coming.

I pulled the papers out of my purse and read them again just to be sure that I heard her correctly.

“….a diagnosis of Autism Spectrum Disorder is appropriate…”

I just couldn’t figure out why I was so upset; all that I knew was that I was.

We pulled into our yard and walked into the house. My dear friend who was watching the girls was kind and sensitive enough not to ask anything. I’m pretty sure that she could read it all over my face anyway. She knew my son better than most people. From day one, she has been his favourite “church aunty”. I asked how the girls behaved and she told me some of the silly things they had done. I thanked her again for her help. She hugged me and left.

The rest of the day went just like any other. I put away the groceries, made supper, the kids had baths and went to bed.

The next day came and we knew it was time to start moving ahead with things. I called Autism Services and set up a home visit. I started looking into some of the equipment that I thought may be helpful for him. Weighted blankets and toys. A pea pod. Maybe even a service dog. My boy is a runner. A highly non-verbal wanderer. He has gotten away on us twice and those have been the most terrifying moments of my life. There are dogs trained to help kids like that.

My husband came home after work, and again the evening went like any other. Supper, play, bedtime.

Now I was finally ready to talk about things. I confessed to him how surprised I was at how hard I was taking this and how guilty that made me feel. We talked about how to go about telling people. Should we tell people? This isn’t the kind of thing you announce on facebook. I had already told my mom the previous day and my friend who had been watching the girls called earlier and we talked about it then.

When I say we didn’t know whether or not we should tell people, it had nothing to do with keeping things secret. We were more concerned with him being seen by others as just a label instead of himself. We decided that as people asked (some of our closer friends knew that we were going through this process) we would tell them and just let the word get around as needed. No sweeping declaration, no vow of silence.

The next few weeks came and went. During this whole time, my son and I had been making weekly trips to the center for his group therapy sessions. I found my greatest comfort in these times. There were two other kids in the session with him; a little boy accompanied by his mother and a little girl accompanied by her grandmother. The other boy had been diagnosed months earlier and the little girl was still waiting for her assessment.

During these session, we caregivers sat in an observation room and were able to visit. I told the ladies that he had been diagnosed and there was just an understanding. No pitying looks or insensitive questions. I admitted to them how I had been feeling and that I was going through a period of mourning.

The grandmother seemed a little taken back by that, but the mother understood. Not mourning that my son had some terrible disease or anything, but mourning for the future that he very likely will never have. When our children are born we have certain expectations (whether we realize it or not). They will graduate high school, be successful in their career, fall in love, marry, have a family of their own, etc.

These are things that my son may never experience. His education I’m less uncertain about. I know that he’s smart. I also know that his educational process will look different that most kids’.

The other mother talked about her own mourning process and how just when she thinks that she’s through it, another wave of sadness often sweeps over her. Strangely, I found comfort in that. In knowing that I’m not just some crazy and selfish mom, and that someone else understood. She provided me with helpful information about who to connect with, funding available, what else to expect as a mom. I’ll always be grateful for her help that day.

I have since come to realize that a large part of my difficulty with getting the diagnosis is that even though we were expecting it, there was always this glimmer that maybe it was something else. Something easily changed so that my boy wouldn’t have a lifetime of struggles. That glimmer is gone now. autism definition

Throughout the past six months, my son has made some great strides. He is more able to ask for things that he wants, or be able to say “no thank you” to things he doesn’t want instead of just reacting with fear or anger.

A month ago I took him to the doctor to be checked. The standard procedure with him has been that I sit him on my lap, hold his forehead with one hand, his chin with the other while the doctor gags him with the tongue depressor to get him to open his mouth so he can check his throat. This time, my boy willingly opened wide and said “aaaaahhhh”. He also happily let the doc check his glands and lungs.

WOW!

I don’t know who was more amazed, the doctor or me. Okay, I thought, if he’s this good with the doctor then maybe he’s ready for the dentist.

Last week I took him in for his first dentist appointment. I explained to the hygienist beforehand that he is autistic and I didn’t know how he would react. We agreed that we’d be more concerned with checking for cavities and if he allowed her to do a cleaning, great. If not we’d try again another time.

I brought him in and he sat happily in the waiting area with no fear or anxiety. Our hygienist approached him and introduced herself. My son looked at her and introduced himself! Then motioned to me and said, “And this is mom.”

What. Just. Happened???

He has NEVER done that before! Every female within earshot “awwwww-ed” and I grinned from ear to ear.

He does that. He has those days when he just amazes me with his progress. He also has days when it feels like we’re going backwards. Those days come less often, but they are hard. Remember when I said I had taken him into the doctor? One of the hardest things about the communication issues that he has is that when he is sick, he can’t tell me. I can see signs like a runny nose, fever, etc.  What I can’t see is an owie tummy, a sore throat or a headache. Those moments shatter my heart!

A few nights ago he woke around midnight, highly agitated. I gave him a hug, but it didn’t help. I tried to sing his favourite song and read a story. Nothing but more agitation. I asked him if he was feeling sick but his response was, “feeling sick”. I asked him if he’d had a bad dream to which he replied, “bad dream”.

The problem with echolalia is that it’s difficult to decipher if he’s telling me what he needs, or just repeating. I tried everything I could think of and fought the urge to just sit down and cry with him. Forty five minutes later I got him a drink of water which he chugged back like he’d been wandering The Sahara. I refilled the newly emptied cup, he took it and marched happily back to bed.

I was relieved that he was settled, but bewildered that he was unable to tell me that he was thirsty because that’s something he has been able to say or sign for quite some time now.

My choices are to let the frustration get me down, or just keep moving forward. Some days sinking into despair looks appealing, but that doesn’t give my boy what he needs, so forward we go.

We continue using his PECS sheets and some sign language. He’s really focused on simple addition and reading so I am riding that wave for as far as he’ll let me. He loves the Leap Frog cartoons, Super Simple Songs on YouTube and music and learns so much from those things.

We live in a wonderful community that embraces him beautifully. His playschool teachers are amazing people who don’t just ignore him, but don’t try to force him to be someone he is not. His daycare workers are great and just let him be himself but don’t let him use his diagnosis to get away with bad behaviour.

My oldest daughter amazes me constantly in her patience with him and her understanding that sometimes he just needs mommy’s attention and that she’ll have to wait. I know that God has big things in store for this girl that He has just filled to the brim with compassion and love. I try to take her on outings one on one as often as I can because I never want her to feel ignored.

We continue to navigate this new territory unsure of what is ahead, but fully confident of Who is in control. Thank you, Lord, that you go with us every step of the way!

 

Wendy

Stepping Into the Spectrum

It’s the kind of thing you never really stop examining. At least not for me. Not yet.

Should I have eaten more of this food during my pregnancy? Less of that one? Did I forget to take my prenatal vitamin one day? Maybe I was too stressed. Maybe I’m just a bad person and God decided to punish me for it through my child. The questions on this list are endless.

Of course I KNOW that the answer to all of these questions is a resounding “NO”. My head knows that. My heart? Well, that depends on the day.

My son is not a punishment and never has been. He loves to giggle and be tickled and sing and swing in the back yard for hours and hours. Just like most every kid. My son also loves to arrange his vast collection of balls a hundred different ways a hundred times a day. By size, by colour, by softness, by type, in order of importance to him personally. In a straight line, in a circle, in a triangle, in an octagon. Don’t try to take one out or trade two around. He’ll know. Even if he wasn’t in the room, he’ll know instantly.

My son also loves to quote “Max and Ruby”. In fact, he uses it often to communicate with me. He will bring me a blanket and when he’s given up on me trying to figure out what he wants he’ll say “super bunny”. Ooooohhhh, you want a cape! Got it! For those of you who know my little boy personally, if he’s ever asked you to do something like this for him, count yourself special. Not just anybody makes the cut for this kind of intimacy with him. It means he loves you and trusts you to understand him and not get frustrated with him or treat him like he’s stupid. So many do. They don’t mean to (always), but they talk about him like he’s not in the room. He might not join the conversation like you expect him to, but he’s there, and he’s taking it in. He takes in so much more than people give him credit for.

 

 

It’s a warm August day and we are walking to the “check a mail” as my kids call it. We do this most days because it’s close, and sometimes the only excuse we have to leave the house/yard. Flyers, bills, the usual, a letter from the Center. Hmmm. They have been working with my son for almost a year now. They are great! What are they sending me this time. It’s pretty thin so it can’t be a report. I get the kids back into the stroller and tear open the envelop. I don’t have patience to wait until I get home to see what this is.

His assessment has been booked. THE assessment. The one I’ve been waiting for and dreading for the last 4 ½ years. I don’t want him labeled, but the label opens the doors for help, for funding, for equipment. And maybe, just maybe, the label will stop well meaning people from diagnosing him themselves.

I have a month to prepare for this. Not that we have to do anything. There’s no studying or training or practice. But I have to prepare my heart to hear what it’s known all along.

The assessment is broken into 2 appointments. We meet the Pediatrician, the Psychologist and the Psychometric (that was a brand new word for me). The Social Worker, Speech Language Pathologist (SLP) and Occupational Therapist (OT) are already well known to us. They have been working with my boy for a year and he loves them and they love him and for that I love them too!

Today it’s just me and my boy. He’s playing in the corner with some of the toys he’s become familiar with there while I answer questions.

So many questions.

Many of them are the same question just asked in a different way. It’s a little annoying, but I get it. They need to be sure that they’re getting the truth out of me. Not that I would intentionally lie, but I think my mama bear nature is to protect my cub and maybe I have glossed over a few things without even realizing it. I had made up my mind prior to this to be completely honest about everything. I have spent the last month in prayer for God to give me the strength to be honest. It shouldn’t be that hard, but what if they judge me as a mother? What if in my honesty they discover the true cause of his whatever is my faulty parenting? It’s hard to be vulnerable.

For a moment I step outside myself. My mouth is moving. Words are coming out of it. I’m making eye contact and nodding at comments made by our “team”.

I’m not hearing a word.

I’m struck with the fact that my little 4 year old requires a “team” to help him learn how to “do” life. It’s not fair, God. I know we’ve had this discussion a million times, but why does life have to be so hard for someone so small and sweet?

I snap back to reality. We’re moving to the next room. He goes into one room with the Psychometric and I watch through a window. I’m listening and filling out paperwork.

She’s asking him to copy her, but she’s not giving him enough time. No! You have to ask him like this. Just give him one more minute, he’ll get it. I know he will!

This is one of the most agonizing steps in the process! A-ha! That’s why the parent has to stay in another room. I get it now.

This part is done and the Psychometric is now one of my least favourite people. It’s nothing personal, she just made him get frustrated. Put those claws away, mama bear!

More questions, more answers, more structured and observed play.

We’re done. Day one is done.

We load back into the van and head out for lunch. He’s worked hard for that Happy Meal.

 

A week and a half have passed and something springs back to my mind, “if at all possible, we prefer to have both parents present for the final assessment”. It’s an easy text into his boss for my husband to be able to get the day off.

I try to tell my husband what to expect, but I’m not entirely sure myself. I introduce him to the “Team”. The Psychometric isn’t here this time. Good, I haven’t quite forgiven her for doing her job last time. We exchange niceties. Yes, roads were excellent. It is a lovely fall we’re having. Nope, no trouble getting the time off. We’re all friends now – let’s get on with it.

We go to the gym. They let him swing and climb and giggle. When he giggles and looks you straight in the eye he melts your heart! One of the million things I love about this boy is that there is not an insincere bone in his body!

The OT knows his favourite songs and games and he is having a blast. The SLP has this way of getting him excited about language and she pushes him to work hard, but he has so much fun that it doesn’t feel like work.

Now it’s time to go play with the Psychologist again. We try some pretend play but he really doesn’t care that the “baby is sleepy”. Throw a birthday party for the doll? Ok, now she’s speaking his language! After a small snack break he perks back up and now it’s time to see the Pediatrician. He’s being about as cooperative as he ever is with doctors, but she is patient and kind so he cuts her a little slack.

“Ok, all done. Why don’t you take him to whichever waiting room is his favourite to go play in while we all confer.” says our Social Worker. That’s easy – to the slides!

I watch him play while trying to hold my heart together. I know that this is the last time he’ll be playing as just himself. Any minute they’ll come get us and from that moment on he’ll be The Autistic Boy, or whatever diagnosis they give him. I’m trying to pray silently, but the words aren’t coming. Romans 8:26 & 27 comes to mind, In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”. Thank you, God, for knowing what I need even when I don’t!

My husband and I don’t say a whole lot. Not that we’re upset with each other or anything, but there doesn’t seem to be words for this. This is uncharted territory for both of us. What is the waiting room etiquette when waiting for your life to change?

I know that nothing will really change. We’ll still keep doing what we’re doing and our boy will still be who he is; but it still feels like we’re about to walk through a door that we can’t go back through again. I’m not trying to be dismal, just realistic. We’re both quite certain that Autism will be the diagnosis. In fact, we’d be more surprised if they told us that it wasn’t.

“Hi buddy,” the Social Worker says to my son, “having fun?” He turns to us, “Alright, we can head back to my office now.”

Part of me wants to freeze this moment before he becomes a label and just always let him be himself, part of me wants to just get this over and done with and start moving forward. My body is just on autopilot anyway, following along.

My husband and I take our seats on the comfy black leather loveseat and right then it hits me – this is why they want both parents present! Partially to get a fuller picture of our son, but mostly because they know that we need each other for support right now.

There are words coming out of mouths and we nod and “uh-huh” appropriately. The Pediatrician leans forward slightly. “Based on what we’ve observed during this process, what the OT and SLP have observed during their work with your son, and the information you two have provided us with, it is my professional opinion that a diagnoses of Autism Spectrum Disorder is appropriate.”

I think the only words I can mutter are, “oh, okay”. We have an opportunity now to ask questions. We can’t think of any right now. I’m far more surprised than I expected to be.

Everyone files out of the room except the Social Worker. We start talking about where to go from here. We discuss programs available to our son, what specialists are available to him and us. He assures us that we do not have to walk through this alone. He keeps handing us papers and we keep saying “thank you”.

We are silent as we walk out to the van. It’s now time to start our life as an Autism family.

My Unexpected Journey

It was a typical school assignment for a typical class.  It went something like this:

Dear future me,

Hi, how are you?  I know you’re good because you have it all figured out.  You’ll be 26 years old when you get this.  You’ll be married and have 2 or 3 kids by now.  You’ll be a stay-at-home mom, but have your accounting degree.  Your husband will be awesome.  Probably athletic.

It went on like this for probably a good full page or 2.  I don’t remember exactly because the teacher who vowed to send us our letters in 10 years never did.  My 20th high school reunion is coming up this year…I’m not holding my breath.

This was the life I expected.  The life I planned.  I saw absolutely NO reason this wouldn’t come to pass.

Where did all MY plans get me?  Well, for the record, I aced all of my high school accounting courses!  I enrolled in a local-ish college Business Administration program with a major in Accounting.  After year 1, the major switched to Marketing (I loved and excelled in these classes).  I always was a creative type and although the basic bookkeeping end of accounting was fun, I needed to let my creative juices flow freely.

Fast forward through a few years selling insurance, then being an office manager/bookkeeper (see, I did get to use some of my education) for 4 years.  Still no sporty husband, still no 2 or 3 kids.

The year I was 25, I had it all (less the hubby and kids).  I really did enjoy my job, and I was good at it.  I had a great group of friends, owned my own place (roommate free!) and lived in the same town as all my immediate family.  I was happy.

Then, God starting doing something in me.  It was time to move on.  Now I have never been afraid of change – if anything, I crave it – but why would I want to give up a perfectly comfortable life?

Over the next year, the feeling got stronger and stronger but God just kept telling me, “Not yet”.  Then, in September of 2004, within a 2 week span I had a new job, trained my replacement at the old job, sold my home and secured an apartment in a new town.

Three years went by there.  Career wise, things were good.  Promotions, travel for work, a dear friend nearby.  Still no husband or kids.  The memory of that letter haunted me from time to time.  Most of my friends were married, and had or were having kids.  I had nieces and nephews that I loved dearly but I longed for my own family.

Late 2006 I did that thing I was never going to do; I set up an EHarmony profile.  It took some time, but eventually I connected with this farm boy (who would rather play with a tractor than a hockey stick) from a tiny Prairie town.  We talked, we met, we dated and in 2008 we married.  I was 30 years old by now.  Things were a little behind schedule, but coming along nicely.

Two years later we welcomed our first child.  A sweet baby girl who filled me with so much love at times, and so much frustration at others.  She was borderline colicky and my husband worked at a job that only allowed him to be home on weekends.  At this point I was 1500KM away from my family and didn’t really know anyone well enough to reach out to here.

My Princess grew and learned…and talked and talked and talked.  By 11 months she was saying short sentences and being an all around genius (at least in my eyes).

Sixteen months after becoming a mommy for the first time, we did it again.  A boy this time.  Other than some feeding issues early on, he was one of the most laid back little kids I’d ever seen.  The exception was hunger.  I’m good, I’m good, I’m hungry NOW!!!

My little champ couldn’t really care less about playing peek-a-boo, or reading countless stories like his sister.  Just keep him fed and dry, let him watch the front load washer do a load or two and life was good.  He was a much earlier walker than his sister, but not so much with the talking.

We thought we were done.  We sold most of the baby gear and I tried to convince my heart that I was okay with these two dears.  Hubby got a job with a much, MUCH better schedule, benefits and better pay.  No more being sent out.  No more being the married single mom anymore.

Through the early years, we had our issues.  Big issues.  With God’s help and a handful of close, trusted and Godly friends, we overcame these issues and in January of 2013 decided we wanted just one more baby.  This time it didn’t happen as easily as the first two.  While trying no to worry about not concieving, I was also trying to deny the signs I was seeing in my son.  He was two years old and still not overly concerned with talking or interacting.  He’s just a little behind.  He just has his own interests.  Who cares if all he wants to do is recite the alphabet and line up his toys over and over.

Around the same time that we started seeing a local Speech Pathologist, I found out I was finally pregnant!  The emotions that accompanied me during my pregnancy were heightened as I struggled to come to terms with the fact that it was more than a little delay with my son.  We were referred to a center that deals with special needs children in a nearby city and we have put on many miles going back and forth to appointments.  Each and every one worthwhile.

Our third child, another girl, was born a little before our son turned 3.  The “A” word was getting brought up more and more to me.  I pleaded with God on more than one occasion for that not to be his future.  Please don’t punish our sweet, innocent boy for things that aren’t his fault.

The birth of our daughter was a blessing, but for me brought a level of postpartum depression and anxiety I was not prepared for.  I sought professional counselling, I tried every trick in the book.  I called out to God more times than I could count to take this crippling anxiety from me so that I could be the wife and mother my family needed me to be.  I fought and fought and that winter was the hardest of my life.  My kids were constantly sick.  I could barely function and if one more person offered well-meaning but unsolicited advice I was going to snap.  At 10 months old, my daughter was still being nursed.  Then she got sick…again.  I was done.  I weaned her and went on anti-anxiety meds.  I knew I needed medication but was holding off because I hoped to nurse for a full year.  To be clear, this was what I felt was right for me.  Other moms who wean sooner or use nursing friendly meds – I applaud you for doing what was right for you!

I started to feel human again, but depression and anxiety weren’t supposed to be part of my journey.  I did NOT write those things in The Letter!

Our son was getting older and the “delays” were becoming more and more obvious and six months ago it became official.  He is on the Autism Spectrum.  My boy is Autistic.  My boy is going to have to fight for every little victory in his life.  Things that my girls take for granted, having a conversation, telling me that they don’t feel good, or what they want to play (or don’t want to), these are things my little champ is going to have to work at.  And work hard!  And he does!  He’s still my happy little laid back buddy.  He’s a mama’s boy which is fine because my husband has two daddies girls!

More about the diagnoses process another time.

Along with the diagnoses came another BIG decision.  One that I have wrestled with since my first pregnancy – schooling.  I had felt called to home school for a long time, but it’s intimidating, it’s unpopular in most circles.  It’s time-consuming. It’s the right thing to do for my family.  My boy is smart!  Crazy smart.  Like most autistic kids, my son possesses certain skills way beyond his peer group and our local school, I feel, does not have a program that will benefit him.  I refuse to let my boy fall through cracks!  So right around the time Autism became part of our family identity, so did Home schooling.  Another detail that was not in The Letter!

And did I mention that I also work part-time.  At one point this winter it was four simultaneous part-time jobs.  That also wasn’t in The Letter.  There was nothing in there about being a family on a budget.

So Future Me and Real Me don’t quite have our stories straight.  Remember “You’ll be married and have 2 or 3 kids by now.  You’ll be a stay-at-home mom, but have your accounting degree.  Your husband will be awesome.  Probably athletic.”?  Yeah, real life reads more like:

You have 3 kids, one of them is Autistic and will require a level of parenting you never knew you were capable of.  Your husband is great, but he’s an imperfect creation just like you (gasp!).  Your girls are strong-willed and will challenge you in new ways in everyday.  You will not be one of those moms who has coffee with her friends while the kids are in school because you’ll be in school with them.  You’ll be working too.  Even though good moms don’t do that (I was an idiot back then).

But here’s where God’s plans prove SO much better than mine.  His letter to me would read something like this:

You will learn patience because what you want you’ll have to wait for, with no guarantee that you’ll ever get it.  What you think you want won’t take you where I want you to be.  That husband who isn’t quite who you expected him to be, he’s the best match for you because you two will compliment each other.  That son that some people call “disabled”, I gave him abilities that other people could only dream of.  And he’s going to give you the ability to become the mom that I made you to be.  He’s going to make you patient and compassionate and fierce.  Those girls with the determination and stubbornness, those girls who are just. like. you? Teach them to use their determination well.  Teach them to use those traits for My glory and not for their own devices.  So here’s the part of your Unexpected Journey that I have revealed to you this far.  Just wait to see what’s next!

I’m waiting!

Wendy