Dear Lady at the Mall

You probably know who I am.  Bright pink coat... walking ahead of her two screaming young children on the escalator in Sears.  I, on the other hand, can't actually recall a single detail of what you looked like.  I was so shocked by what came out of your mouth that the rest of the details are a bit of a blur.  But I'm pretty sure that you will remember me.

You see... there are all sorts of things about my life that you don't know.  And yet, tonight, you nevertheless chose to tear a strip off of me in front of everyone... including my own children.

You started in at me while I was walking in front of my children, ignoring their misbehaviour.  Perhaps you thought they were misbehaving because I was ignoring them?  You don't know that I was ignoring them intentionally.  Because giving attention to these kinds of behaviours will actually teach my children to use them more often.  You don't know that the reason my children were crying in the first place was because they hadn't been behaving.  So after a few warnings, I applied a consequence.  We were leaving the mall, as I had told them we could no longer eat at their favourite noodle restaurant. 

You don't know that my kids were crying because they were trying to get me to change my mind.  You don't know that I didn't really want to leave.  That I had a couple more errands to run and was also really hungry.  You don't know that, regardless, I was holding firm, and we were leaving the mall.  So yes, they were crying.  But I know that staying to stop them from crying won't ever help improve their behaviour.  It will make things worse. 

You don't know that tonight, I was doing it all right.  My kids' therapists would be proud.  I am proud. 

I tried to explain this to you, but you didn't want to hear anything I had to offer.  I couldn't get two words in.  You just kept yelling at me about how I needed to learn to "control my kids" and how you had your own two children, so you knew what you were talking about.

You don't know that both of my children have multiple diagnoses, and that their behavioural challenges are part of these diagnoses.  Now, this doesn't mean that I think they can behave however they please.  But it certainly makes it likely that you would struggle with them just as much as we do.  You don't know that both of my kids have been in regular therapy since they were 2 years, and 6 months of age, respectively.  You don't know that we have consulted Occupational therapists, Physical Therapists, Speech-Language Pathologists, Psychologists, Behavioural Consultants, ABA therapists, Psychoeducators and a whole other host of medical professionals in the 4 short years since we became aware of their challenges.  You don't know that we are not just letting our children do whatever they please.  You don't know that we continue to pay professionals, out of pocket, to help guide us. You don't know that we are doing everything in our power to help our kids learn to manage their emotions in a more socially acceptable manner.   But yes, there are still challenges.

I thought of trying to explain this to you, but realized that you weren't there to listen or try to understand anyhow. 
 
You don't know that my mom and uncle were killed in a car accident a year and a half ago.  You don't know that the last year and a half has been the hardest period of my life.  Harder than I could have ever imagined.  You don't know how challenging and exhausting it has been to raise two children with emotional regulation and behaviour problems when you are entirely drained and depleted yourself.  You don't know that I got up each and every day and did it anyhow.  You don't know that even on the darkest of days, I have continued taking the kids to therapy, and that we have continued to do our best to provide them with a positive, supportive home environment, where they are loved and appreciated for both their skills and their weaknesses. You don't know that even on days when we feel depleted from the demands of life, we always do the best we can to parent our children.

You don't know that just before my kids' meltdown began, an elderly man passed out on the escalator behind me.  You don't know that my kids waited patiently for maybe 10 minutes while I helped carry the man to the top of the escalator, with a few other people. You don't know that, in that time, my children learned how to put the needs of a complete stranger before their own.  You don't know that they were learning some great life lessons about how to be compassionate and caring, even if it is towards someone you have never met before.  You didn't see the looks of concern for this man, etched on my children's faces, as they watched this scene unfold.  

You don't know that seeing a 2 minute slice of my life is in no way a reflection of who I am as a mother.  Tonight I was doing it right.  But even if you had seen me while I was doing it all wrong (and yes, we all have these moments), you still do not know, at all, what I am like as a parent.

You don't know that my 4 and 6 year old heard and understood everything you said to me tonight.  You don't know that they both started crying tonight while eating dinner, asking "mommy, why did that lady say you are a bad mommy when you are a nice mommy?".  You don't know that when my son said that you were the bad mommy, I didn't tell him you were, even though I was so tempted.  You don't know that I told him that you're not a bad mommy, but that you were probably just having a bad day.  Because I refuse to spread hatred and intolerance, and to teach my children that it is ok to make unkind and hurtful remarks about others. 

I gave you the benefit of the doubt that you couldn't offer to me.


You don't know that I will not let you shame me into believing that my children crying is a reflection of me being a bad parent.  You donn't know that I will not let you shame my children into believing that they have a bad mother, or that they are bad children because they cannot "learn to stop crying".  We sat around the dinner table, once we got home, and discussed how it is not nice to say things that hurt other people's feelings and how even though someone tells you something about yourself, it doesn't mean that it is true, or that you should believe it.  My hope is that this will be the first step towards my children learning that they cannot let themselves be defined by how others view them. 

You don't know that you cannot shake my confidence that I am exactly what my children need as a mother.

You donn't know any of these things because you didn't stop to ask. 

Perhaps, next time, before you denigrate a total stranger, you might want to offer the person a few kind words, ask if they are having a bad day, or if he/she needs any help.  Or you could maybe just remind yourself that there might be one or two things about that person's life that you don't know, and choose the route of compassion and caring instead.

Daycare Update

I wanted to share a quick update on the kids and the transition to their new daycare while I had a few minutes.

Overall, things have been going really, really well.  You can check out some photos of their first two weeks at daycare here.

I have to admit that I was nervous about this transition.  My kids just don't do well with transitions.  Period.  I mean, even transitions from the park to home.  So this big of a transition left me a little bit anxious.  

The kids went from a small family daycare to a large, bright, noisy daycare centre with 2-3 times more kids per class than where they were previously.  Not terribly SPD friendly.  I feared that Logan would become super aggressive and that Chloé would want to be held all day long.

But my little guys showed me that I should have given them a bit more credit. 

Overall, the feedback from daycare so far has been that they can't even tell they are not just "normal" kids.  Chloé is apparently the first one asleep a room full of crying babies and is typically the last to wake up (who is this kid???).  Logan joined into the daily routines seamlessly.  Every time I go to pick him up, he's somehow quietly sitting at a table, doing whatever activity they are in the midst of.  Though he didn't nap his first day, he laid on his mattress for 2 hours WITHOUT MOVING!! (and who is this kid???).

I had spoken to the kids' OTs prior to us choosing the larger centre.  They acknowledged that there would be more sensory stimuli to deal with in a centre.  But they said that the extremely consistent routines and constant structured activities of a centre would help the kids manage better.  They also added that, regardless, they will need to learn to function in this type of an environment for when they start school.  That was all that it took to convince me that this was the right setting for them. 

We couldn't have lucked out more.  All of the educators are absolutely fantastic.  One of Logan's educators used to be a resource teacher and was the person who was called to pull kids out of the regular classroom and into the sensory room, to calm them down when things were getting challenging.  She can read the signs that Logan's engine is starting to get a bit fast better than anyone other than his own parents.  She uses his weighted vest, his earphones, gives him squishes on his body and his feet and encourages him to take a break alone as needed. 

His other educator doesn't have any particular knowledge about SPD, but is super interested in learning.  She also feels very comfortable approaching me with any concerns they have about him.  I feel confident that issues will be addressed as they come up, rather than ignored until they are too big to manage.

Chloé's educators are also all very willing to learn and do whatever they can to help.  I met with all three of them on Friday and not a single one of them made me feel that the discrepancy in her behaviour at daycare versus at home was because we weren't handling things properly (sadly, this is often the reaction we get).  One of them even asked if she could come to our house after daycare one evening to see how difficult it is for Chloé to manage by the end of the day, saying she wanted to understand the impact of the sensory input on Chloé. 

I feel that we couldn't be in better hands.  Logan talks about his "new friends" all of the time.  And although I know that he liked his old daycare, he has only once brought up the names of anyone from there since he left.  He seems fully adjusted.

Stress Squared

This past week has been the week to end all weeks.

It all started off when my kids got kicked out of daycare on Monday.  No warning that they were too difficult to manage.  Just a note left in Logan's bag that we were to find daycare within two weeks.  REALLY???? 

Let the panic begin.

A few phone calls later and I started to realize that this was a bigger problem than I had initially realized.  Firstly, the minute I uttered the word "special needs" on the phone, people scrambled to hang up as quickly as they could, muttering whatever excuse they could think of.

I eventually got directed to the daycares who typically accept the kids with special needs.  I was told that they only have a permit for a certain number of kids with special needs at one time.  For instance, one daycare I called that has over 100 children only has a permit for 10 kids with special needs.  And there were no spaces for any additional special needs children.

And suddenly, I began to understand that our challenge finding daycare was going to be much greater than I had initially anticipated.  Not only did I need to find a daycare that was willing to take my challenging children... I also needed to find one that had two spots available for children with special needs. 

Uh... yeah.

Thankfully, after mountains and mountains of disappointment and stress, we managed to find a daycare that I am hoping will be a perfect fit for my little guys.  And it seems that it might well be.  So far, they are super interested in hearing what they can do to meet my kids' needs.  They are willing to let therapists come into the daycare to do therapy and give suggestions.  They're even willing to make my kids' specialized meals (I surely didn't ask for that one, but we'll take it!).  

The whole experience of having Logan kicked out of daycare was a very big wake-up call for us.  Until this time, we had been informed a little bit of his challenges in daycare, but we had basically been told that he was doing ok.  However, him being kicked out made us realize that things were much more difficult than we had been told.

This, coupled with the significant challenges we've been having at home lately made both my husband and I independently conclude that we are pretty convinced that there is something else going on with our little Logan that has yet to be diagnosed.  I've always sort of suspected that he may be diagnosed with ADHD one day down the line.  But this past week has made us both start wondering about other possible diagnoses.
 

Being an S-LP, I know full well than many diagnoses aren't given until the child is 6 or 7 years old.  Which is mostly why we haven't yet investigated anything further.  However, given these recent events, I spoke with a psychologist this week just to question whether or not there was anything further we could do with him.  We're desperate for help.

I'm not so much searching for a label or a specific answer.  I'm searching for help.  Suggestions and guidance on what we can do to make our lives easier.  Because it certainly ain't working the way things are going now.  And sadly, in our society, the label is often what gets you the help.  Right now, we qualify for nothing in the public sector.  No label.  Not severe enough.  Despite the fact that we struggle to make it through almost each and every day.

After 45 minutes of discussion, the psychologist responded that she suspected that Logan might have a non-verbal learning disorder.  She also recommended that we do a screening for Autism spectrum disorder.  My response was that, I couldn't be sure, but I was pretty certain that his social interactions and communication skills were too strong for him to have ASD.  I evaluate these skills in my clients day in and day out.  She suggested that I ask Logan's other therapists their opinion to be safe. 

And boy was I shocked at their answer...

Logan's OT told me that she and Chloé's OT had discussed this possibility several times before.  

And I restrained my jaw from dropping.

Although I briefly entertained the possibility that Logan might have ASD further to this conversation, I was still pretty convinced that this didn't fit his profile.  

Earlier today, I read this blog post here, by a friend of my sister's and realized that I completely identified with her description of her son.  Which is making me re-evaluate whether or not I truly know how high-functioning autism presents these days.

I'm now so utterly confused as to whether or not I even know what high-functioning autism looks like - despite having worked with these kids for 10+ years.  In any case, we have an evaluation booked for the end of the month, which I hope will provide us with answers and guidance.  I don't have high hopes that we will get a specific diagnosis for anything at his age.  However, I do hope that we will learn how to better manage the daily struggles we have.

Then only two short days after I had this conversation with Logan's OT, I had a similar conversation with Chloé's osteopath.  At the end of our session, he let me know that he feels that there is something bigger going on with Chloé than just her sensory processing disorder.  He feels that this doesn't quite explain the extent of difficulties she is experiencing in her gross motor skills.  But he said he can't quite put his finger on what could be going on.  So yet another mystery... God this whole thing is complicated!!  

However, he also said that, regardless, he felt that we are doing all that we can right now, between OT and PT and having her on waiting lists for gastroenterology, neurology and physiatry.  Nonetheless, I am starting to realize that her delays may also be much more longer term that we had initially anticipated.

Trying out a new hair-do for our new daycare.

Thankfully, my sister came down for the weekend and helped purge some of the stress from this past week.  We drank wine, watched tv, went to the pool, and just chilled.  She watched the kids while I bumbled around trying to gather various information that the new daycare had requested - lists of what they can't eat, where to buy what they can, lists of what bothers each of them and what to do to calm them, etc.  It was a blessing not having to do all of this while also looking after the kids, particularly since Jérôme was a bit sick.

Here's hoping that tomorrow we will turn a new page and that the worries of this past, extremely stressful week will be behind us.  Fingers and toes crossed that everything goes relatively well at the new daycare this week.  I can't handle another week like the last!  
 

Shattered Into Pieces

Tonight, my heart feels shattered into pieces for a multitude of reasons.  Some of which I can't get into right now. But let's just say that this week has not been without stress.  And it's only Monday.

The past few weeks have been extremely challenging.  Having missed OT for 3 out of 4 weeks, my kids are having a much harder time functioning in our world, as I mentioned here.  For a few weeks now, it has taken us until 9 or 10pm to finally get Logan down to bed.  He has been waking up in the morning in a massive tantrum, like he used to months ago.  And it can take me up to two hours to be able to get anywhere near him to calm him down, as he is wildly screaming, kicking and throwing things everywhere.  Never mind that both kids are back to waking up multiple times each night.  Last night I slept 3 hours, as if I had a newborn.  I am physically and emotionally exhausted.

As I put Logan to bed tonight, he once again melted down in front f my eyes into the temper tantrum to end all temper tantrums.  I left him in his room on his own for awhile to calm down, telling him to come get mommy when he was ready.  And when I went back in to see him and picked him up in my arms, his big brown eyes looked up at me, tears streaming down his face.  And sobbing, he said to me "Need some medicine, mommy.  Need some medicine".  And when I questioned him, he then added "Need some medicine to stop me crying".

We've recently been using another homeopathic remedy with Logan for when he has these tantrums.  I've never said much to him about it, other than to ask him to crunch his medicine in between sobs.  Yet, apparently, Logan has somehow made the link between this remedy and it making it feel better.

And as I left his room to get his homeopathic remedy, tears streamed down my own face.  Tears of sadness that my 2 1/2 year old already knows that he has something inside of him that is bigger than him.  Something that he has to fight every day to keep down.  And that he was begging me for a way to help him not feel like this.

Baby... if only I could take away whatever it is that makes you feel this way, I would in an instant. It breaks my heart to see you struggle so much.  And to see how you can switch within minutes from an almost animal-like beast, who I cannot help to calm no matter what I try, to my sweet, loving little Logan who gives me tender kisses as I put you to bed.  I hope that as we progress together on this journey, I'll be able to help you unveil more of this side of you.  And in the meantime, please know that I love you with all of my heart.