You want to put Mason in a Psychiatric unit??

So I got a call from a certain Doctor today, he began by telling me that almost all of Mason’s Drs. had a “Complex Team meeting”. I was thinking OK, now what. I can tell you I was not even kind of ready for what he said.

“As a team we cannot agree on Mason’s diagnosis or on “who” Mason is. We all see him differently we do know that there are issues and that he is suffering. We do know that something has to be done and we feel that the best way to do so is to admit Mason to Child and Youth Mental Health Psychiatric Unit.”

::HEAD EXPLOSION::

::BOOOM::

“You want to what?”

“Well we need to figure out Mason and who he is, what is causing his behaviours and what to do about them. Mason doesn’t sleep and we need to figure out a way for him to sleep, that needs to be done in a controlled enviroment. We need to talk about what meds he is on and what he needs and doesn’t need. Mason will have assessments to figure out what is wrong with him. And this is the only option to stop him from suffering.”

Now here is the History of Mason.

Mason is g-tube fed and has lots of issues with swallowing and digestion.

Mason was diagnosed with PDD-NOS a form of Autism in November 2010. This particular Dr. who called me on behalf of all the other Drs. thinks that Mason doesn’t have Autism because the assessment was done privately and we got a “pity” diagnosis. What is stupid is the assessments were done privately, but two of the three Drs. are on the team at Sunny Hill. Sunny Hill is the team he wants him to be looked at by.

The same Dr. doesn’t believe that Mason has Smith Magenis Syndrome, because we don’t have the blood tests results that back up the clinical diagnosis. Except the Genesist is certain Mason has it, do to him checking of every box. Thats why its called a “Clinical Diagnosis”. In truth Mason may not have SMS, but if you look at the characteristics of SMS, you see Mason. So thats why they gave him the diagnosis. Everything matches up.

This Dr. believes that if we could get Mason to sleep properly than Mason would do a complete 360 turn and have no behaviours. I get that behaviours can be made worse by loss of sleep, but that is not the case with Mason.

I was at the OT just after I got the call from “this” Dr. and I asked the OT his thoughts on the behaviour vs sleep issue. His answer was of course it can help, but with Mason sleep would never be enough. “There is more going on than sleep”.

Of course there are way more issues that were not addressed in this post, but I don’t care.

They feel that Mason should be admitted but wouldn’t give me any answers to all the many questions we have.

So there you have it.

My three year old Son’s Drs. believe he should be admitted to the Psychiatric ward.

Talked to someone who worked there… they don’t get three year olds.

Now what?

Well now I have a headache.

When Reality slaps you in face once more.

There are times, only when I am alone which isn’t very often that I daydream.
I think to myself maybe he isn’t that different.
Maybe we are making a Mountain out of a molehill.
Maybe one day we will look back, b/c they were all wrong.
Maybe he will be just fine, and life will be “normal”.

And then you wake up and read that your life really is different, and not normal.
It maybe our normal, but it’s really not going to “just be ok“.
Shocking that I was part of this report, the words came out of my mouth. 
But living in it I get lost.

Anyways, this is where I have been. Dealing with it all.
A letter to the government on our behalf, asking for respite.

Mason Sears, a two year old boy, was seen for a speech/language assessment by this speech/language pathologist in Fall 2010 as part of a multi-disciplinary assessment to rule out Autism Spectrum Disorder (ASD).
I had the opportunity to assess Mason in his home and observed his interactions with his parents and siblings as well as with myself.

Mr. and Mrs. Sears reported that Mason’s physical, developmental, and social skills varied from day to day and within a day. This was observed during the assessment sessions. At times, Mason was happy and well-regulated, particularly when engaged in preferred and / or repetitive activities and behaviours, such as watching a favourite movie that involved Harry Potter or Peter Pan. However, within moments, Mason was observed to become aggressive towards others in his environment, whether that was his parent or another adult. Mason was also observed to rapidly shift to become aggressive with his siblings. Even as a professional who is trained to work with children with significantly challenging behaviour, I was on guard for my own personal safety while working with Mason. For example, on one occasion, I was interacting with Mason as I administered an item on the language test. Mason was smiling and talking with me; however, in an instant, Mason suddenly hit out at me with a toy, hitting me in the face. This was despite having been in a guarded state when working with Mason as other acts of aggression had already been observed towards me and others. Mason did not respond with any empathy when an over-exaggerated emotional response was given in response to the injury. Mason was observed to hit his mother and father as well as his brothers, again without emotional response or checking in to see if the targeted person was hurt. It was obvious to this speech/language pathologist (SLP) that Mr. and Mrs. Sears feared for the safety of Mason’s brothers. There is significant risk for physical injury to family members and to others who interact with Mason in his home or in the community due to Mason’s tendency to suddenly become aggressive towards others.

Mr. and Mrs. Sears reported that they no longer can have friends over to visit, especially if those friends have children, as there is a history of Mason hurting the other children. This is emotionally and socially devastating to Mr. and Mrs. Sears. Mason cannot be left in the nursery or Sunday School classroom at church, cannot attend community and therapeutic playgroups, or engage in play on playgrounds in the community due to concern for the safety of other children. This risk for sudden and extreme aggression is impacting the social interactions of Mason and his family members.
During the assessment sessions, Mason was also observed to engage in self- injurious and potentially physically harmful behaviour. Mason was observed to hurt himself when frustrated and aggressive. He had no awareness of safety within his home environment. He readily scaled to heights or onto surfaces that were unstable or unsafe. His parents were continually on guard to ensure that they could remove Mason from such situations as they spontaneously and suddenly arose. Mason was observed to scale the stove, to find a pair of scissors that had been hidden, and to reach into a kitchen drawer that contained knives or other pieces of silverware. In each instance, Mr. or Mrs. Sears quickly intervened to remove Mason from the risk situation. I was cautioned as I entered the home to make sure that my keys were tucked away out of reach as Mason had previously been electrically shocked when placing keys in electrical outlets. During the initial session, Mason was quick to notice the location of my keys and sought them out. They were removed from his possession and stored in an even more hidden location from that point on.
Mason was observed to eat and drink food that was unsafe for him, as determined by feeding team recommendations. He would seek out his brother’s bottle as well as any food or inedible item that he could find as he sought to put them in his mouth. Again, Mason’s parents were quick to intervene and remove the item from Mason’s possession. Mason’s swallowing issues put him at significant risk beyond that of other typical preschoolers due to risk of aspiration. Mrs. Sears reported that they must continuously watch Mason around any source of water, including water in the bathtub and the toilet, as Mason will attempt to drink the water if not under very close continuous supervision. This seeking out of water or thin liquids tends to become an obsessive behaviour. Due to his feeding issues, drinking such water or thin liquids could potentially cause aspiration pneumonia.

Mason was reported to be a safety risk when traveling in the car as well as when around vehicles in general. He does not keep his seatbelt on while riding in his car seat in the car, despite ongoing verbal prompts to do  so. 
Mason’s fascination with keys puts him at risk when around cars. He was reported by his parents to have put the keys in the ignition of his father’s car on one occasion.

Mason was destructive when it came to his own possessions and the possessions of others. This examiner had to closely monitor test materials as Mason was quick to reach out, attempting to tear pages and break test props. Mason was observed to walk right over toys on the floor with no regard to what he was doing. He dumped out bins of toys and threw them, rather than playing appropriately with them. Mrs. Sears reported that these were not uncommon behaviours for Mason. Mason readily threw toys and other objects around the home, with no concern for the toy itself or what object it might hit and break or person that it might injure. Mrs. Sears reported that Mason has damaged the walls in their rental home. She was concerned about the cost of repairing the damage when the potential time comes for them to move from this home.

Mr. and Mrs. Sears both looked exhausted and worn from caring for Mason both during the day and during the night. Mason was reported to not sleep well and his parents had to ensure that he remained safe during the night, especially with respect to his G-tube and feeding equipment that he wears during the day and at night, resulting in minimal sleep for them. Mrs. Sears reported that she very rarely cooks meals for the family on the stove or in the oven any longer due to safety risks with Mason. Microwaving is primarily the only means of cooking food in a safe way in the home at this time, due to the need to continuously supervise Mason. Mrs. Sears reported that it was difficult to make sure that she ate adequately or had time for personal care due to the time demands of caring for Mason.

Recommendations:
Mason’s parents and his brothers are in urgent need of immediate respite care for Mason. Such respite care would allow Mason to be kept safe while the family could have down time from the high levels of vigilance they all personally must engage in.
Mr. and Mrs. Sears need the opportunity to have time to connect as a couple in order to preserve their marriage so that they can continue to provide strong parental support for Mason and his brothers.
Mr. and Mrs. Sears also need individual personal time to rest and distress from the ongoing challenges of monitoring Mason’s safety, medical, and behavioural issues.
It would be of great benefit for Mason’s brothers to participate in a sibling support group. This would ensure that the social and emotional needs of the brothers are met as they face the daily challenges of being a sibling to a highly reactive, aggressive, and unpredictable brother.
Mr. and Mrs. Sears also need the opportunity to spend focused time with their other two children when they are not monitoring Mason’s behaviour in order to ensure that they are meeting the emotional, psychological, and developmental needs of these boys.

Overall, Mason demonstrates ongoing and daily extreme safety and health concerns that are impacting the quality of his life as well as the quality of life of his family members.
If you have questions or require further information, please contact me.

Funny how this testing that this Person did was to rule out, Autism. But in fact got us our diagnosis.

I don’t know where I was or am going with this post. Just thought you should know why and where I have been.


Mason is three.

It has been three years.

Three years since our lives were completely changed forever.
Three years since I thought my son was healthy, 1090 days since I discovered he was not.
It has been three years since I have averaged more than 3-4 hours of sleep a night.
Three years since “normal” existed in our world.
Three Years since Mason was just a teeny baby sitting in my arms, as I dreamed about what his life could become. 
Three years of struggle, hardship and pain.
It has been three years.
Three years since Mason came into our lives and changed who we were and are.
The growth, the bond, the strength we have achieved, all from Mason.
Our marriage and family tested more than most in a life time, has been made stronger with deeper love.
Patience.
Most important Mason has taught us, we are not alone.
God is in control of everything, we just need to trust.
Mason taught us that finances are just that finances.
He is the reason that we learned money will come and go, there is no reason to fight, or worry about it.
God provides.
Mason has taught us that there is light in the dark. It may be hard to see at times, but its there.
Mason has made us grow, and there is so much more growth left.
Mason’s “terrible two’s” has been the hardest year so far.
Moving yet again.
Financial burdens
The following are the Diagnosis we received in the order we received them in the past year:
Oromotor Dyspraxia
Sensory Processing Disorder.
Anxiety Disorder ( Mason and myself)
Pnuemonias
Non Restorative Sleep Syndrome
Chronic Lung Disease
Development delays become more severe.
Mason stopped eating orally.
Expressive Language Disorder
Impulsive and harmful behaviours.
Restless Leg Syndrome
Smith-Magenis Syndrome
PDD-NOS (Autism)
Possible Sleep Apnea and seizures.
Motility (dumping issues)
Possible transition from G-tube to GJ-tube is being talked about. 
Getting asked to move again due to Mason’s noise and behaviour.

This has been the hardest year of my life, depression creeped in.
The amount of information that our family was faced with this year was “out of body”.
I personally have felt lost in the craziness of our life.
This has also been the biggest year of growth and support in my life.
My motto is no longer,
“It is what it is”.
I now rock out : “In him I trust”. 
This has been the biggest change for me in the past year.
I am ready for Mason’s third year of life. 
We are ready to take these “diagnosis” and show them who is boss.
There are many changes to come this next year, and I am finding myself very ready for them.
But most of all I am ready to try to learn how to help Mason.
And Josh and Carter.
We all are going to need to learn how to deal with it.

To Mason,
I love you more than words or actions can or have said.
I wish I could take all the pain and suffering away.
I am happy that you are three, it has all gone so fast.
Happy Birthday Spiderman.

Love your Mama.

The Best Christmas Present we could ever get.

Good tears are a flowing people…
they are flowing and it feels so good.
This morning we were told that Mason was found to be eligible for the At-home program.
Not only was he found to be eligible for Medical benefits but also Respite.
Just pure shock and excitement at getting anything…
but getting both Medical and Respite. 
Wow. Just. Wow.
This means that most of what Mason needs is going to be covered. 
I cant even tell you what this means to us.
AHHHHH!!!!
::tears and snot everywhere::
We have been fighting for so long…
We know that the fight is not even kind of over, but at least people are now joining our team.
A strong team wins the game right!
The past five weeks have been an absolute whirlwind for us.
First we get two diagnosis in one week.
For those who do not know yet Mason was diagnosed with Smith-Magenis Syndrome and Autism.
In the past five weeks we have gone to having very little funding…
whatever we could get from Charities.
To know being approved for Autism therapy, Medical benefits, and Respite.
Talk about a complete three sixty to last year.
Not even going to think back to where we were last year. 
In the past couple months we have had several donations, some big & some small.
It has all helped.
We have presents that are coming for our boys for under the tree & a food hamper coming from the church.
It may seem silly because my Mom is making Turkey dinner on Christmas day, but I really would love to make my children their own turkey Dinner here at our house on Christmas Eve. 
It just wasn’t in the budget with everything else this month. 
I can’t even wait.
Maybe Mason will even enjoy a few bites of what he’s allowed.
We want to make it clear that my Nick does work, in fact he has one day off this week.
 Nick works so hard for us. 
We sit in lower middle class income, and we would have been alright even if I didn’t go back to work ever. 
But the costs of Mason have cost us more…
Like so many people we had to sell our home, use our saving and then go so far into debt.
It will take a miracle or very rich person to help us, to ever get out of the pit of darkness that is our finances.
It’s a good darn thing we believe in Miracles.
::laughing:: Cause one can dream right!
We know that God has had us in his hands guiding us through this.
We have felt his hand alot lately.
The people that walked away from us have been replaced by a couple hundred more and those that have replaced them mean so much more than we could ever tell you.
We have truly felt alone for so long and the past several months we have felt so loved, prayed for and supported.
I am sure that some people find it funny that I say I am loved and love complete strangers.
Even Nick thinks its a bit nuts how much I care about “complete strangers” but I do.
You all have lifted our spirits.
We can’t even begin to thank all of you who have reached out when we have been in the worst places.
Josh is and has been having a lot of trouble handling everything that has been going on.
I am praying that with someone to help with Mason now, Josh and Carter will receive the attention they need. 
This has been extremely heart breaking as a Mother. 
I just don’t know where to begin to help heal Josh’s heart.
It is hard living with Mason right now.
It must be especially hard on Josh.
This funding is going to do more than just pay for Mason’s extraordinary needs, it’s going to bring our family back to a place where we can focus on being a family.
Where I can focus on being a better Mother.
Where maybe we can see more of Nick.
What a Christmas miracle.
The tears won’t stop flowing.
But they are some of the best tears I have ever had.
I just need to Scream.
And as soon as the babies wake up I just might!
As for us we will be decorating our Christmas tree tonight as long as Nick is home.
It’ll probably happen tomrw since I have a feeling he is going to get called in.

Celebrations are in order, whos coming?
God is just SO good.
“And my God will meet all your needs according to his glorious riches in Christ Jesus.” – Phil 4:19

The Sears Fam

I cried today.

We were slapped in the face today.
And it hurt.
I guess the “numbness” is finally subsiding & let me tell you it doesn’t feel nice.
The Government got us again.
The Negatives in the last three weeks.
1. Mason was diagnosed with Smith-Magenis Syndrome & Autism.
2. I found out my Identity has been stolen.
Kind of fitting as I felt stuck in someone else’s life.
3. The Government told us today we owe $6000 dollars, they had screwed up last two years & were giving us too much Child tax benefit every month. This is my only income & the only money the government gives Mason. They are garnishing Mason’s Disability Benefit & the Child tax benefit for the next 13 months. I have filled an appeal to not have to pay the money back, but the likely hood of that happening is pretty much nil. 
4. We are now going to have to move to I don’t know where when our Lease is up unless there is some kind of divine intervention.
5. Josh has been to the Principles office & has been punching other children at school.
The Positives in the last three weeks.
1. Mason was diagnosed with Smith-Magenis Syndrome & Autism.
I am just glad to know what we need to do to help Mason.
2. We found out that my Husbands shifts are NOT going to be changing & that means there will still be overtime.
He just worked 12hr shifts 10 out 12 days, poor Man & poor Mama.
3. The Government gave us the Grant to have more extensive Genetic testing to find out what mutations of SMS Mason has. This will help them decide on the best Medical treatments.
This grant is not one that people are usually able to get.
4. After putting my foot down, squeaking some more wheels I got some oil. The At-home Program Nurse was at our home on Monday. In her opinion Mason is dependent in 3.5 out of 4 of the requirements. Now it will be up to the board on Dec 16th to decide if they agree. If they do Mason will get Medical funding. It would be the best Christmas present someone could give us.
5. My Blog Design business is slowly starting to pick up & it couldn’t be at a better time. 
6. Josh is going to be taking the bus as of Monday. This will save 1.5 hrs of driving time, gas & Mine, Mason’s & Carters sanity. And Josh is thrilled to be taking the bus!
7. Josh has started seeing the Councilor at his School.
8. I cried today.
The work to be done: 
1. Get my identity back. Close & open all new bank accounts, call all creditors, get new SIN#, new Drivers, fill out fido paper work, and file a police report.
2. Fill out & get the Drs. to finish filling out paper work for Autism funding & Charity letters.
3. Lots of follow up appointments with several Specialists now that we have a Diagnosis.
4. File the papers for Autism funding & Charity funding.
5….
6……
7……..
8………..
There is so much more to be done, but I am not going to bore you anymore.
Today was a hard day.
I felt like we have taken 3 steps forward to only take 5 steps back.
Tomorrow is a new day & hopefully we can take it on with smiles.
Josh is staying home from school tomorrow so we can go see Santa at a quiet time for Mason. We are then headed to Children’s for Josh’s appointment and Mason’s blood work.
Hoping to post our Santa photos soon! 
Any Millionaires out there that could share some of their wealth with us?
Nope?
Just checking.
Miracles can happen right!
The Sears Fam

This is forever.

So this may not shock you.
We are sad. 
So very sad that this is not going away.
Mason is who Mason was.
Mason is who God intended him to be.
Is this hard for us, for me?
I don’t know when this won’t be hard for me.
But the realization of it all has begun to sink in.
My son has Special needs and they are not going away.
Mason has Smith-Magenis Syndrome and Autism.
There is much to be done.
There are so many decisions to be made.
Are we ready?
Well we have to be.
This week I called our government office…
the office in charge of paying for all medical supplies.
I left several messages that they were to call me by the end of the day.
“Waiting eight weeks just to get an appointment that would be another eight to twelve weeks away, and then a six to eight week waiting period for the decision was unacceptable”.
I received a message at the end of the day from them, they were leaving for the day.
So I left a message stating that if I had to give my son over to social services in the next six months, it would be on her”.
We would sell every last item we had before giving Mason over.
Just so you know.

I received a call the very next morning from the nurse.
Our appointment in on Monday, November 29th, 2010
That’s right this Monday.
Squeaky wheel gets the oil.
And I got the oil.
The nurse will come assess and talk with us.
She said she will have a pretty good idea whether or not he will get on the program.
If she says no…
I have yet to receive all the papers we need to apply for the Autism funding.
I know that the coming weeks are going to be an emotional time for us.
When the pieces of paper that say my son has Smith-Magenis Syndrome and Austism arrive…
it’s starts.
It’s official.
Can I ask for extra prayer this Monday?
This Nurse needs to see that Mason needs to be on this program.
That he has the right to be on the program.
The final decision will be made on December 16, 2010 by a board of government people.
People who have never met my son or my family.
Pray for their hearts to be open.
Pray we get funding.
Funding would change everything.
The past is the past.
The debt is just debt.
But we can’t keep up with the way everything has been going.
There is no more money to be begged, borrowed and never stolen.
Pray.Just.Pray.
I need to thank you, the support has been so needed.
Both Nick & I have felt very alone for a very long time.
You have touched us, your comments & emails have kept us going these past two weeks.
Thank you.

The Sears Fam

Just another Monday, just another diagnosis?

I have been struggling to write this post, how do I say it?
How do I explain how I am feeling.
I can’t, I’m numb.

Mason’s Riddle is almost solved.
In the past week we have had two very large Diagnosis.
The only thing left is to find the all the pieces to complete the puzzle.
On November 15, 2010 we learned that Mason has a Genetic Syndrome, Smith-Magenis.
We have learned a little about SMS in the last week, but have alot more research to do.
How do we feel about it?
It’s awful.
But we also know he will get the help he needs and so will the rest of my family.
I am still dealing with the shock I think. 
I have had a few moments with a tear or…
I don’t think it’s fully there yet.
Today, November 22, 2010 we learned that my son has been diagnosed with Autism.
Pervasive Developmental Disorder – Not Otherwise Specified, to be exact.
Now we kinda new that eventually we would get this diagnosis.
And we are really happy to get it now, so Mason can get the therapy he needs.
Early intervention is the key we have been told.
I have been thanking our Saviour all day.
This has been the hardest two years of my life & he knew I was really tired.
He knew it was his time to tell us.
He knew that we were mostly emotionally ready to handle it.
Does that mean we are not crushed? No not really.
We are upset for Mason & for our family.
This is not what we dreamed about. 
This is not what we thought our life was going to be.
A good friend sent me this message today:
“God wrote the story of his little life before he was born. Nothing can change who he (M) is, just your job to manage it”.
This could not have come at a better time, thank you.
So Mason has Smith-Magenis Syndrome & Autism.
Yup, still numb & overwhelmed with the sheer amount of things that need to be done in the next fews weeks.
But so grateful to have a starting point.
Thank you for your continued prayers & support.
The Sears Fam

A piece to the puzzle.

“Smith-Magenis Syndrome”
The results from Genetics are in.
Mason has Smith-Magenis Syndrome.
What is it?
I don’t really know.
We have a lot of reading and learning to do.
I do know it’s rare and it has it’s challenges.
Will Mason get funding?
I don’t know that either…LOL

We have to prove that he will be dependent in three out of the four areas at three.
1. Toileting
~Yes he will still be in diapers.
2. Washing
~Yes he will still require someone to bath in the shower.
3. Feeding
~Yes he will still have a G-tube.
4. Dressing
~Yes he doesn’t even put on his pants or shirt yet.

We are believing that God will provide.
That God has set this path and we are following it as closely as we can.

The process of getting funding.
We applied to the government on Oct 5, 2010.
We are to expect a call from a nurse to book an appointment.
There is two-three month waiting list for appointments.
Then a nurse comes and six to eight weeks later we find out whether he is accepted.
We still haven’t heard from the nurse.
I will be calling again tomorrow for the third time.

How do we feel about all of this?
We don’t really know yet.
We knew that there was something wrong with Mason.
It has become even more evident in the past year that this isn’t going away.
If he has to have a Genetic syndrome I am thankful that it is one that can have a great outcome.

Mason will need support for the rest of his life probably.

I am ready to accept this?
No.

Is our fight for Mason over?
No.

Does this change everything?
I sure hope so.

This is a HUGE piece to Mason’s puzzle.

Next week we find out if Autism is another piece.
I honestly think more now than ever it is.

I received an email from a Lady who has become a great friend.
This Lady was praising God, we had some answers.
An answer that isn’t as bad as it could have been.
She reminded me that none of this was/is my fault, there’s proof.
This Lady told me we fought & now we know a piece that we were fighting for.
There is so much more that she said that was right and I needed to here it.
She said she, “hoped I was not mad for her telling me these things…God was typing not her”.
He works in mysterious ways.
I need to thank her.
I really need to hug her, but she is SO far away.

There is one other friend who let me type out my feelings all over them.
And I thank you.

Nick has been at work since before we found out.
I can’t wait until he is home.
I do need a real hug.

Today, is not a sad day.
It is a hard day & tomorrow will be harder I am sure.
But we will get through this.
We will learn & we will help Mason learn.

Please go & buy this CD.
100% of the proceeds from the sale of this album will be used to establish a SMS Research Fellowship that funds a graduate student to study SMS and support the SMS community.


I have been listening to the songs for awhile now.

To learn more about Smith-Magenis Syndrome.

Maybe you can help us help Mason.

Thank you for your thought and prayers.

The Sears Fam