Cuckoo

Lately we have been struggling with Jacques answering back, and general quickness to anxiety and frustration.

One of my pet peeves (besides being told by someone without a clue : “You shouldn’t let him talk to you that way”) is that when Jacques looses it, he says “What are you? Cuckoo?”  Its horribly annoying, but what freaks me out is that there are other adults in Jacques life who are likely to blow their stack if they ever hear him say this. Not that I really care.  However, since they think I “let” Jacques talk to me in a certain way, I’m pretty sure I won’t be able to diffuse the situation, because I will, of course, takes Jacques side.  And that’s a whole big headache I’d rather not have.

So I have been talking to Jacques about the use of this word.  I talked, and talked, and talked.  And it had no effect for a very long time.

Its just so very hard to make Jacques understand these things.  He just doesn’t seem to ever have any empathy for other people.  He never holds the door open for the next person, and even if you let a door slam in his face to prove your point, he still doesn’t get it.  But sometimes there is a glimmer.  A couple of weeks ago, he got frustrated with me at speech therapy, started his yelling and said “What are you? Cccccc” and stopped dead.  He didn’t apologize, but he went silent and looked at me.  I told him I knew what he did, and I was very proud of him.  The therapist looked a little confused.  I think she thought I was praising Jacques for yelling at me.

It didn’t last long though, 10 minutes later he got upset again, and called me cuckoo.  Over the last couple of weeks, Jacques has used the word less and less.  In fact I don’t even remember him using it in over a week.

I hope we’ve made it through this one…..fingers crossed I am not cuckoo…..

10 on 11-12-11

Jacques turned 10 last weekend.

His birthday was not so great.

He had a lot of anxiety about being the centre of attention.  And because he likes everything all planned out, and that just didn’t happen, that stressed him out even more.  By the time the day was over, he had fallen asleep extra-early at 7pm.

But there was still magic.  Earlier, I had asked Jacques if there was anything specific he’d like for his birthday. He looked at me straight in the eye, which doesn’t happen very often, and said, “No mommy, I like surprises.”  I was speechless, which also doesn’t happen very often.  I realised in that moment, that I actually learned something about Jacques that was much more meaningful than what his toy interests were.  And it was something I would never have expected due to his autism induced rigidity to liking predictability.  I felt that I had been let in a a special little secret, something even though I had known Jacques for 10 years, I had never suspected.

The smile on his face when his brother sang him happy birthday at breakfast, his excitement to open his surprise gifts, and my luck at learning something new about Jacques was priceless.

It was a great birthday.

Walk a Mile in My Shoes – 2011

This is my son Jacques.

Life is not easy for Jacques, he has 48 XXYY Syndrome.

Academically, school is a struggle because of his attention deficit disorder, multiple learning disabilities and fine motor skill issues.  An making friends is not so simple when your speech is not clear and you have trouble making complete sentences.  Jacques also has PDD-NOS (an autism spectrum disorder) which makes it difficult for him to understand facial expressions, social cues and nuances.

This year our family will be walking the Walk a Mile in My Shoes in Chinguacousy Park, Brampton, benefiting the XXYY Project.
Often, walks will be for much longer distances, 5k, 10k sometimes even 20k, but for Jacques, walking one mile is an arduous task since he’s had surgery on both feet, suffers from low muscle tone, poor balance and overall coordination.
For guys with XXYY Syndrome, one mile is a very long walk indeed.

Jacques diagnosis at age three brought us much despair and sadness, but thanks to the XXYY Project, we now have hope and direction.  On November 26th, 2011, we will be walking with four other families to raise awareness for the rare genetic disorder XXYY Syndrome, and raising funds for the XXYY Project to continue doing their great work of connecting families with each other and information which will help their sons reach their full potential.

Please sponsor Team Brampton here:
http://xxyysyndrome.org/walk.html
Its important that you note that donations made here are in US dollars, as the XXYY Project is a US based charity which serves families affected by XXYY Syndrome worldwide.  You will only be allowed to declare any donations if you have US income declared on you Canadian income tax return.
If you’d prefer to sponsor us  in person, rather than on the internet, just let me know: I am always carrying my pledge sheet so its no problem.

I am also asking you to help us spread the word on this rare disorder, since many guys go undiagnosed or misdiagnosed.  Early interventions with this diagnosis are crucial, but even when diagnosed in the teen years or adulthood, appropriate medical care and interventions will help improve the quality of life these guys will experience.  XXYY Syndrome occurs between 1 in 18,000 and 1 in 40,000 live male births.  This means that there should be much more boys and men diagnosed with this disorder than the 7 families known in Ontario.

Boys and men with 48 XXYY Syndrome typically have some, but not all of the following symptoms:

•     Developmental delays
•     Speech impairment
•     Tall, considering family history
•     Behavior outbursts & mood swings
•     Learning disabilities
•     Intellectual impairment
•     ADD symptoms
•     Autism, autism spectrum, PDD-NOS
•     Scoleosis and other skeletal anomalies
•     Clinodactyly (Curved-in pinky fingers)
•     Low muscle tone
•     Flat feet
•     Sterility
•     Delayed sexual development
•     Undescended testes
•     Low or no testosterone
•     Dental problems
•     Leg ulcers

Please forward this to folks you know so that we can get the word out on this rare genetic disorder.
If the symptoms above sound like the fit your son or someone you know, see your doctor or pediatrician, and ask for genetic testing.
For more information on XXYY Syndrome, visit the XXYY Project website
http://xxyysyndrome.org/whatisxxyysyndrome.html

Having Jacques in my life has been a blessing.  He has taught me patience, understanding and what true love is all about.
He has made me want to make a difference in other people’s lives, and want to change the world into a better place.
The Walk a Mile in My Shoes event, is one of the ways I can make that happen.

Back to school miracles

Well its another school year, and well into the second week, so far so good. No phone calls – wohoo!

Jacques anxiety has been there – new classroom, new teacher, new grade.  But he seems to have settled in.  It still surprises me how much he needs to know what the plan or routine is and how much he hates when it changes.

This week we started something new.   Jacques and Oscar walked to and from school by themselves.

I had talked about it with them about it all summer, and we went over it every day walking to and from the first week, so it was no surprise.  But still, Jacques was not happy about it.  He kept saying – “But I love my mommy!” (which made me sad, but not the way you think). I think part of him still wanted me to come because then there might be a chance he’d get a ride in the car instead of walking.  I think sometimes at the end of the day Jacques, with his low muscle tone from XXXYY syndrome, is just exhausted.  But its good for him to walk, and its only a 5 minute walk (and it stupid to drive the car less than 2 blocks).

And when the day finally came, he didn’t want to do it.

So I did what any desperate mom would do:  I bribed him.  Jacques could eat leftover birthday cake if he walked with his brother to school. And it worked!  I also told him that if he didn’t think he could do it at the end of the day – he should take Oscar with him to the office and call home and I would come and get them.  He nodded and they were off for the day.  And they got home safely.  He was so proud of himself and that he took care of his little brother (and so was I).

For the past week, I have been reading on facebook how sad some of my friends and family are to see their kids grow up and go to school.  And it makes me sad, because I just don’t understand.  Growing up and doing all those things that other kids do is such a huge deal for Jacques, and it takes us so much longer and with so much effort to get there. I want those things to happen so badly it makes me feel crazy.  I feel such a loss for words to comfort my friends and family, and I suppose they feel the same about my commentaries on life here with Jacques.

I guess it all doesn’t really matter, because for me, the glass will always be half full.

The new normal

I’m not sure who coined the term “new normal”, but yesterday I was either living the new normal, or I was in the Twilight Zone.

Normally I am, what I like to call at least, a planner.  I am admittedly not very good at spontaneity.  You can ask me what I am going to do for the next 5, 10,30 minutes, next 2 hours, next 3 days, next week and I will always have answer.  The plan isn’t carved in stone, its always changing, or more accurately evolving, but I find it annoying to not know what I am going to do and I like to look forward to things, so I have plans, big and small. All the time.

Most people would consider this neurotic.

Except, when you are the parent of a kid with PDD-NOS, its not such a bad thing.  And yesterday I realized how heavily I use this planning to manage Jacques.  Jacques had 2 appointments.  The first one would require driving in rush hour, so I planned to leave at an appropriate time.  My beloved husband who is never late for anything,  questioned my departure time, to which I needed to explain that there is an optimal time to be in the waiting room otherwise Jacques gets too wrapped up in the toys in the waiting room  and can’t shift into the appointment. I can’t believe we argued about it.   Then I needed to warn Jacques about the traffic and that it would probably be stop and go for part of the drive.  He still yelled at me in traffic and worried we would be late (deep breaths for me).  We were 8 minutes early (which according to Matt, is not early, but is perfect waiting room time).  Of course the agency messed up the appointment and told me the wrong location, so I needed to reschedule.  After convincing Jacques to leave the toys in the waiting room (he has been in there for 20 minutes at this point).

Then I had to talk him down from the stress of the missed appointment:

“You should have wrote the location down mommy”, I did, but I was told the wrong location (I have paper evidence).

“You wasted my time mommy”  – yeah me too Jacques.

So back home for a short break and off to the next appointment.  Reminding Jacques that he would only be able to play with the toys in the waiting room for 5 minutes before the appointment….

No time to queez in the Twilight Zon, so planning every last minute,  is definitely the new normal.

Strattera Journal – year 2

Well, Jacques’ been on Strattera for over a year now, and we have learned some things.

Jacques weight and appetite are under control, which is to say I don’t need to scream at him to eat something – ANYTHING – PLEAAAAASE! And he no longer looks like a stick-man (although he is still very very slim).  I think the smartest thing we did was give Jacques meal replacement shakes with his lunch.  It seems to help stimulate his appetite and he eats much better at dinner time.

We’ve also learned the signs of needing to increase the dose.  In the last few months, Jacques had become weepy and annoyingly naughty.  I couldn’t put my finger on what had changed until I realized that he had gained 10 pounds since we had settled on the previous dose of Strattera.  So, off to the pediatrician, and now back to 40mg dosage and Jacques is so much better.

I’ll have to keep a better eye on the scale the next time he starts to go wonky again.

MathPad Plus

Recently we, that is Jacques and myself, have been enjoying an evaluation of the software MathPad Plus.

It only took 5 minutes of demo by the therapist for me to see the value in this software, and when Jacques got a look at it he was very excited to try it out.

It has great features, which help Jacques align all his numbers and therefore reduce errors.  Writing is so difficult for him, I’m not sure why, but numbers are even harder than letters.

So far, Jacques has been eagerly working on the evaluation assignment, and I hope the therapist convinces the school to let Jacques use this there.  I fully plan on purchasing this software, and I might even get a second copy for Oscar (I have recently purchased used laptops from work to help out the boys since they both will be using technology to help with their learning disabilities).

MS Walk 2011

It was a crazy walk today – snow, hail, more snow, wet and COLD!
But Team W braved the elements, and stubbornly they all supported me and walked 11km (apparently my crew did not agree with the last bit of the route and insists that we walked 11 and not 10km).  And we certainly didn’t let the cold stop us from the free ice cream cone that the local Dairy Queen offered any participants doing the full 10 km.  It was great to have my kids, my husband, and my best friends in the world walk with me – even though they heckled me about the weather and my obsessive compulsive desire to walk the full distance.

I knew they were only teasing me – because they understand just how lucky I am to still be walking.  I have relapsing-remitting MS, and with 2 relapses in the last year, I must be very careful with my health.  85% of people with relapse-remitting MS develop secondary progressive MS between 5-20 years after diagnosis (its been 11 for me) and usually after 40, a milestone I am soon approaching. My current relapse seems to be mild, but even then there are consequences: the good news is my feet don’t hurt after the long walk, the bad news is that it isn’t because I don’t have blisters, its just that I don’t feel them.  I have much hope for a cure in my lifetime, many new and exciting things are happening in research for MS.  The first pill will be hitting the market soon (way better than injections!) and even though a recent extensive study disproves CCSVI as being the cause of MS symptoms, it is a great development that doctors are now thinking “out-of-box”.

I want to thank all my sponsors, and all my team’s sponsors.  Thanks to your generosity, Team W raised almost 3500$ and I could not be prouder.

I want to thank my best friends Amanda and Phillip.  They drove all the way from Pickering in dubious weather to walk in the most unforgiving conditions I have seen in the last 10 years.  I love you guys.

And I want to especially thank my husband Matt.  Matt came and walked after doing 4, 12-hour midnight shifts in a row, with his sciata acting up, and knowing he would only get 3-4 hours sleep before going back to work tonight for another 12 hour shift.
I am the luckiest wife.

Please take a look at our pictures of the walk:
http://www.flickr.com/photos/violainebatthish/sets/72157626395082767

Doggie developments

About a year ago, I wrote how we had adopted Dog Cora, and how Jacques was adjusting to this change.

Well, this past week a new development has occurred.  Jacques asked me if Cora could sleep in his bed.  This shocked me.

Jacques doesn’t much play with or pet Cora – and now all of a sudden he wants to sleep with her.  It’s weird.  I asked him why – he told me he wanted to snuggle with her and that she loves him and he loves her.  It broke my heart because I know this means something is going on in Jacques head about feeling lonely, and he is not telling me what it is.

Cora has been crate trained and she sleeps in her crate.  She is not allowed on the furniture anywhere in the house, so letting her sleep in Jacques’ room – never mind bed – is a big change in her routine.  Jacques also goes to bed much earlier than I usually put DogCora in her crate for the night. After thinking about it, Matt and I decided that the dog could sleep in his room on weekends (of course with Oscar taking turns).  The first few attempts resulted in her jumping all over the bed and Jacques getting fed up and kicking her out because he was tired and wanted to sleep.  On Friday night, he managed the whole night with the dog.  On Sunday – he begged for another turn, and I caved in.  DogCora got kicked out after 15 minutes for farting (“Mom – she stinks!”).  And right now – DogCora is sleeping with Jacques (so much for weekends).

I just wish I knew what was really going on – and why the sudden change.

The apex of evil

The grocery store is the apex of evil.

I do not say for shock value, but as an observation after watching Parenthood a couple of weeks ago (when a parent of a kid with Asperger’s Syndrome punched a guy who called his child a retard).  As a parent of a special needs child, it never ceases to amaze me that it is at the grocery store where the worst of humanity seems to come out.  I do not know a single parent of a special needs child who does not have a “grocery store” story.

I take the kids to the store for many reasons:  its good for them to learn about healthy foods, its good for them to think about planning meals and budgeting, helping make food choices increases their willingness to taste new foods and realistically – I just don’t have a baby sitter (and even if I did – I wouldn’t waste it on that).

But the grocery store is a place which easily overwhelms and stimulates Jacques.  All the bright lights and signs are huge visual stimulation.  And for a guy who likes things to be in a certain order – well, thanks to poorly behaved people – a grocery store is an anxiety nightmare.

If Jacques sees something not in the right place – well that must be fixed! (To the lady who was staring at my son re-ordering the cereal boxes: if you’ve never put something back on the wrong shelf just because you didn’t feel like buying it for whatever reason, and were too lazy to put it back where you got it, only then, feel free to comment)

If there is fruit on the floor – well Jacques must pick it up!  (To the lady who almost ran over my son who was on the floor reaching for that apple that rolled under the table: its not my son’s job to apologize to you for almost being run over)

If there is a person blocking the way – well then Jacques will wait for that person to move, because he cannot steer the cart very well around people without hitting them.  (To the lady who was not patient behind us – you could just go around and run people over yourself if that’s a problem)

If there is something that has moved aisles – Jacques must go up and down that aisle again so he can memorize where everything is. (To the man who commented on my son talking to himself – you were talking to YOURSELF!)

If there is something new on the shelf – well Jacques wants to know what it is, where it came from, and what you can cook with it.  (To the person we were blocking – sorry you were in a rush – but it was a learning opportunity for my son)

When the checkout clerk is busy talking to her neighbour clerk (and I’m too busy bagging), well then Jacques will scan the item for you! (Thank-you Jacques for remembering mommy’s time is precious)

When the item Jacques wanted and was promised is unexpectedly out of stock, MELTDOWN! (To the people who think they can parent better than me and like to announce it to the whole world: how lucky for you to have all the answers, it would be so much easier for me if I did)

I’ve had to explain to my kids why grownups are yelling at each other in line, why people bud in front of the line, why some people have more than the maximum of items, and why someone is yelling at the cashier over the price or an item. Why is it that people just cannot behave themselves in the grocery store?

The thing is that these things don’t just happen to me.  I have a friend who says he has a special line for the “grocery store people”: Why don’t you take a picture, it lasts longer!

So next time you are at the store, and you see a parent with a kid doing something weird, irritating, annoying or throwing a fit, a parent who looks like maybe they wish they were anywhere else at that moment, instead of passing judgment, smile and say “I know. Don’t worry it’ll get better.” (even if you don’t believe it)