Asperger's Syndrome

Anyone who knows our family knows about our journey with our son Benjamin.  If you read some of my past blog entries you can get a feel for the journey we have taken over the past 10 years in getting him properly diagnosed.

To those that have a child with Asperger's Syndrome, they know that it's on the Autism Spectrum. It a high functioning disorder that effects a child's social behavior the most. But in it's early stages it presents itself as behavioral and leaves even the professionals not knowing what could possibly be wrong with your child. There are no medical tests that can be performed, just questionnaire's, social and academic testing and observances that is used to determine if a child is on the spectrum. So when a child is very young these test cannot be preformed, and so you will likely be told a variety of different things to explain your child's behavior.  At first your doctor will just brush it off as the terrible twos, perhaps blaming teething or other environmental reason for your child's unsettled behavior, he is healthy and making all the milestones a child needs to make, so there is no need to worry, just a phase they will out grow.

 Once your child starts school and they do not want to participate in group discussions or activities, or cannot seem to pay attention to subjects that do not interest them. They will be called lazy, or even disruptive, doesn't take direction well. They will get in trouble for refusing to stay in line, or wait their turn. Cannot play well with others, prefers to be alone, over reacts when doesn't get his way.
This begins the phase when your child is called ADD or ADHD or ODD.  With this period there are decisions to be made that very hard. You will be strongly encouraged to seek medical help, and also referred to services in the area that can help you cope with the stress of raising a child with high needs. We were strongly encouraged to medicate our child by the school system. At this point we were in grade 1, and Ben was causing such disruption in class that I was being called on a weekly sometime daily basis, to come to the school to help calm him down or to just bring him home.  He was enrolled in all school programs to help children with high needs. STEPS was one that teaches children to make well thought out decisions when dealing with conflict among peers, and how to play with others and how to use your words not hands.  He was also included in a morning group the school called the SUPER HEROS group, where the children where given a chance to calm down in a quiet setting with other students by talking about how they were feeling or the goings on of the morning. This was done before students continued on with the day in their regular classrooms with hopes of giving the children time and space to calm. All these efforts proved to help little in his behavior. 
During this stage we also saw him dwelling on topics of interests for an extended period of time, and asking lots of questions about that topic.  We had the school physiologist visit Ben weekly because there were concerns of his obsessions regarding death, as his grandmother had passed away and as this was a new experience for him, he thought about it a lot.

We also had the local child services group involved, we had a weekly visit by a case worker that would come into our home to provide support to Ben and myself. Giving me tips on how to deal with his outburst of frustration and anger. The psychologist from this facility also interviewed Ben, and determined in her opinion that he was dealing with  Depression. She felt that he struggled with low self esteem but that this would likely pass as he grew up.

We felt our life was spinning out of control. Not knowing what to do next, and having exhausted all avenues of help and support. We decided to try medication, hoping for some relief from his outbursts and unreasonable behavior.  The school also said that they would not be responsible for the quality of his education should we choose not to medicate, as we were not bringing our child to school in a state that was open to learning. I felt that was a unfair statement to make, however I thought long and hard and understood the root of that  statement, I knew that it was true.  So this began our long and continuing medication trial and error process. And to be honest of all the medications he has tried and we have had to stop because of side effects, the only one he has been on that has helped with little side effects is STRATTERA. It has provided the relief we needed from the outrageous behaviors that would cause such stress on the family. It calmed him, and he became more manageable. And allowed him to be able to function at school with fewer disruptions. However, that being said, we still saw other behaviors now surface that we could not see before because of the behavioral problems.

As a mother you know your child, and I knew that there was always a missing piece to the puzzle when it came to Ben.  He exhibited behaviors that could not be explained by the ADHD diagnoses. He was obsessive, explosive, avoided groups, had sensitivities to specific clothing items, food items and how they were cooked, and excelled in technology.

Examples of these behaviors starting from 10 months...He would cry explosively as a baby for no reason and nothing would sooth him, he would throw his body into furniture or the wall, he was obsessed with his ties and rubber balls and had to wear and hold them at all times.  He excelled at video games and always has.  He avoids groups and always was reported to be playing alone at school, and if he did play with others there were always problems.  There has always been a concern in how he speaks to adults, he doesn't look at adults in the eye. He takes all that is said very literal, and rarely laughs at jokes. He controls all situations to the way he feels comfortable or he will not participate. He shows sensory sensitivities with socks...if they don't "feel" right he will not wear them. If his mattress isn't "feeling right" he will change beds or even sleep on the floor if that is what feels right to him.  He avoids situations when there is a boy that he isn't familiar with.  He also has no fear or thought out plans when he plays, he often does things that are dangerous and impulsive, all because he feels like it, so he does it. He also shows a lot of anxiety that comes out in the form of ticks. The source of this is unknown.

So with all this evidence and more, I sought out a new pediatrician, was then referred to another psychologist  and finally I received the diagnoses we had been needing. It explains so much about Ben. It will never change who he is, nor is there a cure for it. But it has led to better understanding, and has opened up a whole new avenue of help from the school and social system. We receive funding from the government under a disability tax credit and monthly allowance, and we also have a new Occupational Therapist that will be working with Ben for up to a year through the school!.

So in writing this long post I hope that it might help someone out there that is starting out this same journey. Knowing that you are not alone in this, somehow helps. Above all I encourage all parents that have a high needs child, to advocate for your child because they cannot for themselves. If you do not they will never get the help they need.  Above all recognize that your child has a disability, its hard to do, but once you accept this the sooner they can get the needed help. Telling yourself that he or she is just a little bit eccentric or making excuses for their odd behavior isn't helping your child.  I found this the hardest thing to do. But once you do, it really makes such a difference in how you feel about yourself, and your child.

Secret Indulgences

Shocking isn't it?  I know, I know....but I do have a few.  I do love my Bachelor/Bachelorette! I look forward to each season, seeing all the contestants coming on this show to find love. What I love more then anything is laughing and giggling with the group of girls that meet each week to enjoy it as well!  When I watch it alone, its not quit the same. To some it may seem like a flakey show, with no substance....and I guess that's what I like about it. Its really a fun show,  that shows the way people interact in absurd  circumstances. I have to admit as well that part of the fun is making fun of some of the characters that attempt this show, but also connecting with the ones that truly fall in love on the show and get their heart broken. I've teared up more then once, and find myself getting extremely excited for the proposal.  It's so silly isn't it? But that's ok.   
My next secret indulgence is a Soap I've watched for years, General Hospital.  It too is a show that is ridiculous. The story lines are so funny, just repeating them sometimes makes me laugh so hard. Day after day I watch to see what trouble Carly has gotten into, or what mob war is being fought by Sonny. In recent months it has been a little hard to follow as there are a few new characters being introduced, and old characters leaving, story lines seem to be spinning out of control, regardless I am a fan of the show and will hang in there!  I've heard rumours of it ending, I truly hope it's not true. I look forward to the brainless downtime each night as I tune my PVR to my recording. I'm not sure what I would do...LOL...just joking...hahahaha as much of a fan I am of the show I am not obsessed to the point that my life would be over. I would just feel a little hole until some other mindless show came along.
Let's see is there any other indulges I can write about that make me happy....I really do love watching all kinds of reality TV...Survivor, Big Brother, American Idol, Amazing Race, So You Think you Can Dance, Dancing with the Stars......oh the list goes on...
I guess in reflection TV in general really is my Vice. I watch a lot of it, especially in the evening hours. It's quiet and I get to relax. During the day I am constantly running around taking care of everyone else's needs, once they are all in bed it's me time.

So tonight, I wanted to show my gratitude for my secret indulgences.

Super Moon

It's glaring down on me right now through my front window as I write, the Super Moon. It's so beautiful in the dark black sky. Tonight there isn't even a cloud, just the brightness of the moon lighting up the night. The beauty of creation, there are no words to describe the awe and reverence you feel when you look at the glory of it.

It really makes you think about life, when you see the stillness of the night sky, the beauty of creation. It puts things into perspective almost as much as a slap in the face.  We are cared for so much by our heavenly Father. Though we struggle to get through each day, he sustains us. He gives us exactly what we need when we need it.

I look back over the past few days, and I feel so blessed to have had some time to breath. I feel like I can start again, just like the fullness of the moon.

However I know, as sure as the moon begins another cycle, I will have days ahead that feel just like the moon in its different stages, from full, to half and even down to a sliver barely holding it's place in the sky, and me to sanity. This is something I have come to expect, the different phases of raising a young family.  The hard part is remembering that when things are at their worst, and I am feeling like I am holding on by a sliver, that there is relief around the corner. It may not be as glorious as the Super Moon in the sky tonight. But it will surely come, in some way. Tonight it comes in this moment of reflection, preparing myself for the next few days, maybe weeks ahead.

I will continue to follow this cycle until I am standing,  looking up at the nights sky with my children feeling as glorious as this Super Moon in the fullness of perfection, that will never come to an end!

Livin on a Prayer!

This is just a quick note tonight as I am just heading to bed at 1:33 am, and realized that I hadn't written today. 
I wanted to say how nice it is when our neighbours take turns with me entertaining the children in the area! 
Olivia spent the afternoon across the street with a girl and some other friends around their backyard pool! She had a great time, and it game me a break!

Ben and Isaac spent some time with Trisha for a few hours so I could get a bit of shopping done. It was so nice not to have any children with me for a few hours! I was able to find a few nice things for myself.

Once I got home from shopping Ben went with our neighbour swimming in Dorchester at the public outdoor pool.

As I have written lately, our relationship with our neighbors isn't always that great, so when things are going well it's a relief! It's so nice to get a break for even just a short time, it makes a big difference in the day!

So tonight I celebrate me time! I don't get it often but this week seems to be offering me a chance to take it, so I will!

Tomorrow I will be heading to Detroit with Jeremy to see Bon Jovi! I am very excited as I have been a fan for a long time! Especially in the 80's. I hope he plays a few of his classics, but either way, it should be a great time!  We are even staying overnight and getting in some shopping the next day as well, before we head back home. 
So I may not have a chance to write a blog tomorrow night, but will certainly have lots to say Friday night when we get back!

Sunny Days

I haven't written then past few days, I've been to exhausted mentally to write a post....but here I am back to have a moment of gratitude for the blessings in  my life. I have to admit, tonight I'm not in the greatest of moods to have this moment, as it's been a bad evening. My moods been much like a roller coaster this week, and with that comes a low tolerance for the annoyances that come with raising "active" children.
But really when I put things into perspective I realize that we have had a busy few days together. I really think its just exhaustion that is creeping its way into the atmosphere of the "evening hour," that glorious hour when the kids seem to come alive and become extremely hard to manage.

Our past few days have been action packed, with temperatures reaching a blistering 30 degrees Celsius with a humidex reading of nearly 40, we found our way to a public swimming pool in Tillsonburg, called Lake Lisgar Water Park. It has a big water slide, wading pool area with splash pad features, and large blow up equipment for the children to climb on. With lots of sunscreen on we splashed away the afternoon!

 
After this we had some free movie passes, so we headed over to Woodstock theatres to see Monsters University!  The kids loved it and I actually did to!

The following day we made our way up to our favorite beach, Port Burwell! My Mom and Dad and sister Trisha are camping there at the provincial park. It's so beautiful there...I can't wait until I can enjoy spending more time there camping as a family...for now I am just able to handle day trips.
We had some great fun in sun down on the beach and came home with to much sun on our cheeks and shoulders. But it was worth every second. The kids love the water, and playing in the sand.

Today we stayed at home, I stayed in bed as long as humanly possible with 3 kids running around the house, I was so exhausted. I had cleaned the night before for my parents. They take care of the floors at the local grocers. So after a long day at the beach, I swung a mop for a few hours. Didn't get home to put my feet up till after midnight. I am happy to help though so they can have a few days of rest and relaxation!
After I got up and fed everyone a late breakfast/early lunch I brought the kids to the community swim here in town. It was lovely. Wasn't to many kids there, and because it was indoors I didn't have to lather them in sunscreen. Perfect! A major inconvenience of summer if you ask me...

So I guess we have had some pretty fun days together, with only a few months of Summer we need to take in as much as we can!  The children however do suffer from a lack of sleep, staying up past their bedtime of 8:00 really takes a toll on them, as a result children were very unsettled tonight. This is why I started this post negatively, being  physically tired, and then mentally and emotionally exhausted, this can be to much for me to handle. This leads me to feeling negatively and thus makes seeing the silver lining hard to see, but looking over the past few days I have a lot to be thankful for. Writing it down reminds me that this moment of feeling like the world is crashing in on me is just a moment, and that the bigger picture is bright and beautiful!

Put a Sock in it!

Today was another good day! Nothing eventful happened, so I am very grateful for this! I was able to get some overdue painting done, and even got to watch a movie of my choice today on Netfilx! The children played outside most of the day, and everyone got along! Not even one fight! Again I recognize this as something to celebrate!
This evening I got my hair done, and came home and had a Blizzard with Jeremy.  Oh dear....this needs to stop!  Summer is so hard for me to keep weight off!  I tend to eat when I am stressed. Summer is very stressful for me.  I also do not get to go out walking like I do when the kids are in school. This is starting to get to me, as I can feel it starting to creep back up.  Note to self...stop eating.
I did want to share a funny story about Ben that happened earlier in the week. It really demonstrates the way a Sensory Disorder works.
Ben has always been sensitive when it comes to his feet. He is specific when it comes to the kind of socks he wears. If they are too loose or too tight or the cotton isn't soft enough he won't wear them. So we found a brand of socks he likes from Walmart, and he always wears them without problem. I even send him an emergency pair with him to school in the event he has a problem at school and needs to change his socks.
Well the other day we were getting ready to go for a nice walk, and even a visit to the corner store for a treat.  We were all ready to go and I hear Ben crying uncontrollably in his room. I go upstairs to find out what is wrong. He can't find a pair of socks that "feel" right.  He says "my socks are attacking me".  I point out that these are the same socks he wears everyday...he insists that he needs new socks as they are just not right and are to sharp and not soft enough.  I suggest several pair, and none are good enough.  I suggest wearing flip flops, but he refused. 
So we didn't go anywhere that day as a result of this, which didn't go over well with Olivia and Isaac.
Later that evening we had plans to go out, so I gave Ben a heads up that we were going to have to find some socks for him to wear. We started with a pair I had given him earlier that day when he was upset, and told him these were the newest of all his socks.  It was so funny, he took them from me, smelt them, rubbed them on his cheek and then pronounced "Yup, that's good cotton!" and put them on.
I am not sure what made the difference from the morning to the evening. But it shows that if it doesn't feel right to a child with Sensory Issues, believe them. The child is not making it up. Our pediatrician said that for the majority of people it is a minor annoyance when something doesn't fit quite right or a tag is scratching us, but to a person with Sensory Disorder it's like wearing sand paper on your feet and being forced to keep them on all day.  Unimaginably distracting, and annoying, and even painful.
So this is something that I have to remind myself of, every time Ben has a reaction that is hard to explain or doesn't make sense.  He can't help the way he is feeling, nor can explain it...he just knows it's not right. Finding the patience and the flexibility to deal with it, is the hard part.

I am grateful however that we finally know why this happens, and we are learning to cope.

Won't You Be My Neighbour?

Today was a good day! I am taking time to recognize this before I write my post for the day! The weather was good, and the kids got to play outside. It really makes such a difference on all our moods with fresh air coming in the windows, and the summer sun shining down on our faces! Even my cat was running from window to window taking in the breeze and watching all the birds flying by playfully!

With the good weather comes kids playing in the streets and in each others backyards and each others houses. I enjoy listening to them play, hearing their laughter and watching their imaginations bloom!
But with the good does come the bad, and without fail there is going to be tears, as they all need to get used to each other again after the snows melts, and they emerge from the winter months.

Last week we had our first of what I am sure will be many fights with the neighborhood children, that spilled over to the parents. A fun game of tag turned into a dare game... the girls...vs boys, and that the girls would do what the boys said and then in the return. 

Of coarse at the heart of the problem....my Benjamin. The girls were told that they would be kissing the boys if they got tagged....Ben however felt that one of the girls was told  that he was in love with her....he freaked out and told the boy who said it to take it back or he would tell a hurtful secret that he knew about him...the boy refused and ran in the house.

Sure enough as has happened before, I receive a call from the Father's boy, saying the Benjamin threatened with "Blackmail" if his child didn't do what he wanted, and that this kind of "regime" was unacceptable. In shock of what Ben was being accused of, I simply said I would talk to Ben about it and would certainly ensure he new it was not ok to threaten anyone.

After I got off the phone however, I was not a happy Momma Bear!  I tried to control my feeling of outrage and hurt, but I just couldn't and felt that our neighbor had crossed the line.  In fact his son was the one that was in the wrong and that my child with AUTISM was doing the only thing he and ANY child would do after being embarrassed in front of a girl and other peers.  So I marched over to his house...and although I was emotional, I asked to speak with him.
I expressed how I felt, that after 4 years of getting to know our family and our child, I would hope he would know how hurtful calling Ben a blackmailer and a regime ruler would be.  That he being a 10 year old boy with a social disorder, would not have the careful planning ability to blackmail,..nor would he even know what that was...ridiculous. If anything he was reacting to the situation his child created.
We talked things over and agreed that at times we as parents over react, and that we need to ensure we maintain a good relationship with open communication. After all, this isn't the first nor will it be the last time our children will say or do something inappropriate, as they are children.  I am so tired of reminding adults of this.

So Mr. Rogers neighbourhood? Not even close.