Sunday, March 3, 2013

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!  


Laura said...

I can't remember how or when I first stumbled across your blog, but I'm so glad I did. Some of the things you write about with respect to Logan remind me of my younger brother, which has resulted in me retrospectively looking back on our childhood with new eyes and a better understanding of what may have been going on all those years ago, and today.

I don't know if this is the right thing to say or not, and I apologize in advance if it's not...but I wanted to tell you that your children are so lucky to have such wonderful parents. Your love for them and concern for their needs is so readily apparent in everything you write. And while it may not mean much, I wanted you to know that I have learned so much about SPD from your posts, and how to be a real parent from your example. I wish there was something I could do to help ease your struggles...but I guess all I can say is I'm hoping for the best for you, and sending you a virtual hug from one mom to another (as stupid as that sounds).

Food for Thought Linds said...

Hi Laura,

Thanks so much for reading me. I'm so fascinated by how this is having you reflect on your brother. I wonder sometimes how this all affects my daughter - even though she also has SPD. I find that we are so incredibly busy trying to manage Logan's explosions that I am often passing her off to take care of him. And I feel that she is already reacting to this. It's so hard to be able to manage it all though...

Thanks so much for your encouragement. On a day like today, when I feel like I am too exhausted to go on like this much longer, it goes far to remind me that we can and we are. Your comment brought me to tears.

Bev said...

I feel your pain, your frustrations...I hope that this situation is truly a blessing in disguise and that this new program will be better suited for your children. What an experience for you guys, again thank goodness they have you, who has proven over and over your super hero like strength and love. You're so intuitive and efficient-always looking for the solution when faced with a challenge instead of giving up in despair.

Lindsay said...

A NOTE IN HIS LUNCH BOX?!?! That is so terrible I have no words. I hear, sort of, your day care pain. I checked one out a few weeks ago; I talked to them and 'forgot' to mention Jonathan's needs. When I went to go see the place I told them...some of it anyway! They were very good and I was so excited. I wasn't 5 minutes down the road and they were calling suggesting all these specialized programs that would be better for him. Sigh.
I know the stress and frustration, with the day care and exploring other diagnosis, is way beyond what you have even written, but it sounds like you are handling this so well and that you have found a potentially awesome place for your two:) I hope things go well!

Food for Thought Linds said...

Yes... I was told the tax slip was in there. And only 10 mins later was e-mailed that she had "forgotten" to tell me there was another letter in there that I should read ASAP. I knew immediately what it was.

I just see the whole thing as kind of disgusting, to be honest. That people who are in a profession to help children don't want to help those with special needs. I guess I find it particularly tough because I work with all of these kids and know first-hand how rewarding it is. Though I understand too that a lot of it is fear of the unknown. But it's still tough to deal with as a parent...

Good luck to you guys. I hope you will find something suitable for Jonathan as well.

Lee-Ann said...

Just finally getting a chance to come over and read. I'm so sorry to hear this. :( I can't even imagine that they didn't have the decency to speak to you. That makes me so mad! The high functioning autism label covers a lot and can be related to aspbergers (they are thinking of taking that out of the DSM though) and truthfully I had a hard time seeing some of the things until he had the diagnosis and then it all made sense when watching his interactions. Hugs. It is so hard and I can't imagine the stress with 2 little ones.