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.

Daily Struggles

I am going to try and write each day this summer, even if they are short posts. But I want to try and remember all that I've done and accomplished, even the little things. I guess this will perhaps become a gratitude journal??? I have trouble seeing the forest through the trees at times, so perhaps writing each day might help me "celebrate" each day we get through.
But I am not going to sugar coat anything, because sometime what happens in the coarse of the day isn't always worth celebrating, but maybe if I write about it I can perhaps work through it better.

So yesterday was July 10, and my baby of the family Isaac was 6 years old! I can't believe it! He is getting so big, even if he still sucks his thumb! I really would like to see him stop this habit, but at the same time, as he is my baby I find myself reluctant to begin weaning him off. This is the last thing that still makes him not just my youngest but my "baby'! Selfish? maybe...but just a little bit longer won't hurt? He is such a sweet boy too, a beautiful caring personality. He is a refreshing change, as I don't find him at all needy or high maintenance. He is perfectly happy just playing by himself with his cars, and rarely complains unless his siblings are bothering him.
I love this little boy, and can't wait to see the man that he grows to be!

I of coarse can't get through a day without incident. I really don't know what was the cause of this outburst, but often that's the case. When it comes to Benjamin, it's often unknown what the cause of his anxiety is, but when it's sensory based that is often the way it is.
So here it goes...
The kids are starting to settle into summer holidays, and are starting to get on each others nerves. Fighting is a daily staple here. I often try and stay out of it, as I believe kids need to learn to work things out themselves. But often it escalates to "hands on" behavior, and that's when I need to step in.

Ben started hitting Olivia in the head with Pillows from the sofa, possibly to fulfill a sensory need, but also possible just to annoy his sister. She asked him several times to stop and he wasn't hearing her or reading her behavior to understand to stop. She started to cry and came and got me.  When I talked to him about it, I approached him calmly...I asked him why he didn't stop, and he said he didn't know it was bothering her.  I tried to tell him that when someone starts crying and tells him to stop he must respect that.  He suddenly became very angry and kicked my cupboard with enough force I am surprised he didn't break it. I raised my voice, and told him that he can't be kicking my cupboards, then he crumbled his snack he was holding all over the floor, while staring at me with a taunting glare.  It's so hard to keep composed and not over react, harder then anything....so with this in mind I told him to go to his room to take some time to calm down.   He refused....I asked again...he refused....I told him to go to his room, or he would have his iPod taken away.  That sent him screaming up the stairs, then he fell to the floor in dramatic fashion in the bathroom. He screamed hurtful obscenities at me more horrible then ever before.......this really is the point of no return, I am cooked no matter what I do....I wish a therapist could live with me to see this unfold, tell me the best thing to do....this behavior is not ok....I grabbed him by the arm and ended up physically dragging him to his room...which is not easy as the kid is 90 pounds of dead weight....I told him to take some time to think about what he just said, I wanted him to pray about it and when he was ready to calmly talk to me and apologize to each member of his family he could come out.....He screamed and broke a toy of his brothers over a period of about 20 minutes.
Then he came out, completely calm and reasonable.....like it was nothing. He listened to me explain to him that it's not ok to use bad language, and we really need to work on that problem together. I explained to him that he would have to clean up the mess he made in the kitchen and would be apologizing to his sister and brother and most of all me.  He complied.

Silver lining? I gained a small victory in that he was able to calm himself down. He did what was asked of him, even though it took some time to get there, he did it.

After this we went to Woodstock to see a movie with my sister Trisha and her kids. This really lifted everyone's mood, and gave us a bit of a relief.

I did notice though that overall Ben was just not having a very good day, struggled a lot controlling his emotions and understanding social queues. He had other incidents throughout the day that included not knowing that he needs to stop and ensure someone is ok after hurting them, and also having another melt down when he felt he was being accused of something he thought he didn't do.

These are areas regarding social behavior that we need to work on with his Occupational Therapist that has been assigned to him through the school, once September comes.

So another day passes, I will put this one to bed...learn from today's failures and rejoice in the small victories.

Puzzled?

Wow, I can't believe it's been over a year since I posted anything on my blog. My intentions have been to keep this blog up to date so that I can look back over time and see how my family and I have changed and grown and developed together.  Unfortunately that hasn't been the case this last year.. Not to say I haven't had lots to write about, with amusing stories that will make you laugh out loud till your side hurts, to stories that would make your heart break. Raising a young family has it's moments, but especially when you have a disabled child. He adds a dynamic to this family that compares to none!

Last I wrote Benjamin had been receiving treatment for ADHD, ODD and OCD. With such came medication, but little overall improvement to many other behaviors that just didn't fit with what the pediatrician was telling me was happening with our child.  It was like there was a missing puzzle piece that didn't quite fit.  This led to much frustration here at home and at school.

So after finding a new pediatrician, who sent us to a physiatrist, we received an official diagnosis of Asperger's Syndrome, this is on the spectrum of Autism. This was September of 2012! I am so relieved to finally have a accurate diagnosis. It has led to Ben being understood in a whole new light. Now when he acts out, or doesn't react the way that you would expect, or simply says something that seems unacceptable to others sense of social behavior....rather then being judged as a bad child there is patience and understanding and more acceptance.

That's not to say that we don't still have our challenges, and days that I cry myself through it, because I do. I have them a lot. I feel guilt still, and feel like I am not doing enough.  But at the end of the day I do feel a bit more hopeful, a bit more settled knowing that we have finally found that puzzle piece and we are seeing a better picture of what our family looks like with Autism.

Teacher's Letter to Doctor

I am Ben's Classroom Teacher, and I am writing this letter to you at the request of Ben's mother, Janine. Ben is a grade three student at "...." School. There are 19 students in his class.

At the beginning of the school year, Ben experienced a great deal of difficulty transitioning into grade three. He exhibited oppositional behaviors quite early in September. Ben required cues and redirection for tone of voice, refusal to work, talking back, and put downs to others. He connected with another student, and both were extremely disruptive to the learning environment of the other students.

Ben often blurts out silly, rude, and inappropriate comments intended to make the students laugh or make someone feel badly or uncomfortable. Cues, redirection and discussions about his behaviors, shows little to no emotion during these times, and does not accept responsibility for his actions.

Ben's interaction with teachers outside of the classroom has been quite challenging. Ben doesn't always respond to adults when they are speaking with him. Many times he refuses to answer them and avoids eye contact (ignores them). Quite often, Ben does not follow the rules of the classroom. He is quiet and sneaky about his defiance. Instead of asking for permission, Ben usually does what he wants to do when he thinks you're not watching him. Other times, he outwardly defies adults, choosing to ignore them when his behavior is addressed. Many times, Ben repeats the same inappropriate behavior over and over.

Ben experiences a great deal of difficulty when working with other students (partners, or groups). At times, he is silly, off task and disruptive. Ben also wants to have things done his way. If this doesn't happen, he usually leaves and sits at his desk, or asks to work by himself. Ben is quite rigid in his thinking, and unresponsive to problem-solving strategies which are modelled and suggested to him.

During recess, he was observed to walk around, not playing with the other students. Ben didn't like going outside during the winter months, and often stayed in to play with a few other classmates. He has been going outside with the other students since the nicer weather.

When playing with toys during Indoor Recess, Activity Time, or Free Time, Ben leaves if the students won't play his way, or if he can't "control" the situation. He often plays the same activity each recess (sets up 200 domino's in a snake pattern and tips them over to watch them fall). Ben shows interest in limited topics and really focuses on those specific areas. (tunnel vision).

Ben's behavior fluctuates, and sometimes depends upon the tone of the classroom. Please let me know if there is anything that I can do to help.

Sincerely,
Julie
Grade 3 Teacher

In like a Lion

So this month of March hasn't exactly started out lamb like, but just as the saying goes in like a Lion! I am not referring to the weather...
It all started last month with a decision to take Ben off of Vyvanse, a decision that needed to be made due to side effects that we just couldn't bear to see our 8 year old live through.

I really was hopeful that this was going to be the drug that was going to work for Ben's ADHD, it had great promise being that it was a long lasting stimulant. It seemed to give him the focus he needed to be able to pay attention in class and stay out of trouble. He rarely bothered anyone, and was co operative when asked to perform tasks. We had great conversations, asking deep thoughtful questions about life and why things work the way the do. Our lunch time breaks from school together where very enjoyable as he actually listened and obeyed simple requests to turn off the TV, or computer to eat or leave to go back to school. He gave me few arguments and went to school with no complaints. It seemed to good to be true. Unfortunately it was.
After taking the medication for 2 months the initial concerns seemed to wear off, most of all his insomnia. The lack of appetite although still present, didn't seem to be causing any weight loss and he did eat small portioned meals but along with multi vitamins seemed acceptable by the doctor.
The effects of the medication seemed to be wearing off sooner in the evening as we started into the 3rd month of treatment.  After school became very difficult for Ben to contain his hyperactivity. He was unable or just plain refused to do homework, often claiming not to know how to do the required tasks. He became very angry, picking up on any excuse to start a fight with his younger siblings. Then his anger and adjutaion turned into uncontrolled laughing and giggling, being loud and obnoxious, rude and belligerent.
At this point the school was also starting to see Oppositional behaviors starting to emerge once again. Refusal to complete tasks, unwilling to join in group activities, but still observing improved ability to complete assigned tasks and not getting caught up in the antics of others children.
I met with Ben's teacher around this time, and unfortunately we must have both been at our breaking points that day, because the meeting did not go well. We both lost our "cool" heads and said things that we both regret in the moment. That being said, one thing she did say about Ben will never be forgotten. She said that he was a liar and a manipulator. This is very hard to hear from a person that is with your son on a daily basis, and is suppose to be supporting you in the journey to help him with his disorder.  At the time it hurt me as a mother deeply, as it exposed a problem that really showed how a child with these complex issues can be viewed by others. As liars and manipulators.......the fact is that Ben is a very intelligent child and I can concede to say that he may at times manipulate to get things his way...in fact I think he does that on a daily basis as he rarely doesn't get what he wants....but a liar he is not. He never perceives his actions to be wrong...he always perceives that he is justified and that everyone else is to blame....and if he ever does tell an untruth he will admit to it...but NEVER will he agree to something he feels he has not done or is being accused of...as he rarely feels he is wrong.
After this meeting with the teacher, which led to also meeting with the principle of the school I was able to have a minor adjustment to Ben's educational expectations.  He was no longer expected to complete and/or hand in homework assignments.  We will encourage him to focus on the "important" things at school, and only ask that he continues reading when at home. We also got paper work in line to have the school physiologist and social worker observe and work with Ben to help him with any "issues" they observe.  We then made a date to meet again as a co ordinated group to discuss any further plans for him.  I also let them know that I was meeting with the doctor to discuss adjusting medications due to the behavioral problems we were having.
I met with Ben's Pediatrician and we decided to add Strattera back into his daily dosing, as the Strattera seemed to work best from Ben's ODD, and the Vyvanse on his ADHD. So his dosage would be 20mg Strattera (10mg in morning and after school)  and 20mg Vyvanse in the morning, hoping the Strattera would provide support for after school behavior.
After this addition to his medication I was hoping for some improvements, unfortunately I don't recall there being much change to his agreeableness or co cooperativeness, in fact now that I look back on the past few months it may have been the combination of these two drugs that maybe caused the side effects that brought us to taking him off Vyvanse.....hmmm....it's funny how until you actually reflect and write out your thoughts that connections can be made....

This combination therapy began just before Christmas break and over the past 2 months Ben's "normal" handicaps started becoming very debilitating. He has always been a little OCD about certain issues, like what he will eat and how it's to be cooked or prepared. This became very exaggerated to the point that he ate next to nothing because it wasn't prepared to his liking...either it was burnt or undercooked, even though I cooked to exact timing to ensure it was to his "normal" requirements. He would go an entire day on nothing but a Yop and a granola bar. He also became extremely anxious about so many things...lots of big "what if" type questions, he was ultra sensitive to what he thought his classmates or others thought of him to the point that he insisted on wearing deodorant because he thought he was being avoided in class due to being smelly. He also began cracking his knuckles in a uncontrolled manner similar to a tick (again something that comes up in different forms when he is dealing with anxiety). These issues all became almost unmanageable, arguments ensued between us, and all out refusals to go to school, to eat or even get out of bed in the mornings. He also started becoming very paranoid, started hearing things and seeing things in his bedroom at night keeping him awake to all hours with his lights on.
Near the end of February Ben didn't get out of bed on a Saturday morning till about 10:00am, knowing he had a poor sleep the night before I didn't question it. He finally came downstairs and almost immediately started causing problems with his brother and sister. He continued being unmanageable to the point where he needed to be given "time and space" to settle down and was sent to is room to give him this opportunity. Within a few minutes he began screaming at the top of his lungs, I ran to his room meeting him half way in the hallway. He was visibly shaken, white as a sheet and crying uncontrollably....he was unable to tell me what had happened until much later in the day. He began to describe a feeling that something was emerging from beneath the bed and was about to come out from under the blanket with a loud rushing noise, when he screamed he said it stopped and wasn't able to see what it was. He also told me how early that morning he didn't get out of bed because he was being held in bed by a skeleton and he was to scared to scream for help. Not knowing what was happening to him, I assured him that he was just dreaming and imagining things, not to worry. Later that night he was scared to go into his room for bedtime. I brought him into my bed and layed with him.  I could hear his anxiety, his breathing was quick and shallow and his eyes were as big as saucers. I asked him what was wrong, and he said he was seeing a snake with razor sharp teeth coming out of the ceiling at him. I held him in my arms and told him not to worry that Mommy was there and nothing was going to hurt him. I assured him that his mind was just imagining things and that he was going to be ok.  I repeated this several times before he was calmer, and it took hours and a Gravol to get him to close his eyes and fall asleep.
It was decided then that Vyvanse was the cause of these hallucinations, and he would no longer be taking this medication.  I continued the Strattera at same dosage.
I met with the doctor the following Monday, and he supported my decision to stop Vyvanse and would have done the same. We decided that we would monitor Ben's behavior and see if he is managable without trying anything new, but to continue Staterra.

So March has started rough, hoping that is will end more lamb like.

Daddy

I wanted to dedicate this post to my Dad. He is currently in the hospital recovering from Valve Replacement Surgery to his Heart, and is not recovering as quickly as expected. He has been in ICU for nearly a week now, when other patients would be on their way home by this time in their recovery process. Unfortunately Dad has developed several Pulmonary Embili, so has had to be put on blood thinners fearing additional clots traveling that could lodge in his heart. We are also hoping and praying that he doesn't begin to have internal bleeding, as both conditions could be fatal.

It's times like this that has you reflecting on the wonderful man that he is, and how empty our life would be without him.  He truly has been a wonderful Father, that would do anything for his Family.
I would like to jump up in his bed and snuggle down with him like I used to as a child, I remember the sound of his heart beating when I would lay my head on his chest watching tv, with his big arm draped around me. But with so many machines he has hooked up to him, I can barely get near to kiss his forehead and hold his hand.

It seems like yesterday that he was dancing with me at my wedding, holding my hand through the pains of labor, and being one of  the firsts to hold my babies.

I know that Dad will pull through and will be ok, it's just so hard to see him like this.  I love him so much, and I know that he loves us as well. When he was just coming out of anesthetic and barely able to speak, he was able to muster up the ability to tell us all he loved us.

He is one amazing Dad.   Butterfly Kisses