The New on Mason…

The good news you ask??

We are on the up and up, Mason is feeling pretty stinkin good most days! Why??

After the whole “Dr” mess of wanting to put Mason in BC Children’s Youth and Child Pysch Ward at 3.5 years old, we decided we needed some new Drs. that where wiling to try new things not just hide him away.

We had already talked to a new Private Pediatrician about taking on Mason’s care and she had wanted to take some time to read over Mason’s extremely large file and research his Rare Genetic Syndrome. So when we received the call from her office saying she wanted to take him on while we just in the mess of the “Pysch Ward Incident”, we were really looking foward to meeting her and getting help to work with these other Drs.

When we met her she was kind, open, straight forward and had a number of tests and Drs. she felt Mason needed to have and see. We were instantly impressed that she had gone into such detail with Mason’s file and was already wanting to fill in the gaps. Since we first saw her in Mid October she has set up more appts with Specialists and changed and gone over medications. We are waiting for some tests to help us understand Mason and his issues with sleep.

After our first two visits with the Dr. she brought up the fact she believed Mason had severe ADHD, and she thought there was enough severe symptoms to be a full diagnosis of ADHD, not just parts of his Autism. She wanted to do an asessement, talk to and have his teachers and all his workers fill out questionaires. So everyone took part and Mason at 3.5 received a diagnosis of ADHD and we were warned that it was pretty severe do to the sheer amount of symptoms at his age.

Then the talk about Medication finally happened. We had been asking his other Dr. about ANY kind of medication to help him calm down, the violence that he caused himself and distruction of the house and others was just so much for a three year old. The fact that Mason was completely unable to play with anything on his own even for a minute or two was another issue. Developmentally he could do alot, but functionally in everyday life just getting his own pants on was a HUGE struggle for him. Preschool was both fun and very hard for him, his full time worker at school’s main goal was to get him to sit at one activity for 2 mins. That is NOT a long time people. Mason at the start of January new three colors, and a few numbers. That was it! Our old Dr. just wanted him to go to the Psych Ward then… He now knows all his colors and alot of his numbers! We are working on the Alphabet :)

Our new Dr. saw the need and had Mason checked out by Cardiology, because yes no one had ever checked out his heart even with all his different health issues! Cardiology gave a clean bill of health, PRAISE JESUS! So after some discussion we decided as a group to put Mason on a Drug similar to Ritaline, but called Biphentin. It has far less side effects and is drug that can be released all day long so there are no “high and lows”, no over drugging at one point of the day and not enough later.

The changes were immediate and they shocked all our pants off! Mason is generally alot happier during the day and his violent tempter tantrums are much less than they used to be. Mason is able to to play for much longer periods of time, and when I say play I do mean “Mason play”. Which is way better than it used to be.

Mason has changed in the following ways:

- Mason is able to sleep through the night, most nights!

- Mason is playing by himself, he plays with toys very different than most but I am NOT complaining.

- Mason is nicer to his workers, there is not so much screaming, hitting and scratching. His workers are actually enjoying him.

There has been one shocking thing through Mason being medicated, he is far more Autisic than we though. It turns out Mason’s AHDH was so severe that he couldn’t even see everything or much going on around him. It’s likely that he was so unregulated all the time b/c he couldn’t focus for any length of time to see what was there right in front of him. This is makes me so sad, and so happy he is medicated. I know having ADHD myself and being not medicated at the moment while carrying our fourth little man, just how hard and frustrating it can be to not be able to function very well. And Mason is far worse than me.

So Mason is showing so many more typical signs of Autism than we all previously thought, but this okay. We know have a Child that people can actually work with, we can work with the typical Autism features now. Everyone on a whole is happier including Mason.

My little boy is the happiest little boy he has ever been!

Does this make Mason easy to do deal with? No, but easier and we can see a light that is shining down on him now.

Mason loves to line and catagorize EVERYTHING in our house. I though I would show you some of the things he has actually been able to do now!

This was the first thing Mason did when he got his meds, he was sitting in his room and saw these out of order in his closet. What you can’t see is that Mason also opened every last one of these bottles, getting through three child protections. That takes FOCUS!! LOL He only ruined $100 of Pedialite.

Mason and Carter making Snow angels at Church on the main stage!

Mason posing with me to have his picture taken, SO NORMAL!

This picture and the next show all the cars lined up on end, the way Mason believes everything in the house should be!

 

Mason’s out in the Snow, melt down and strip down. And no he didn’t get sick I made him go inside right away! And yes he is walking around in the snow in his socks and doesn’t even notice.

My favorite little Spiderman!

*I understand COMPLETELY that everyone has the right to their own opinion. However, if you feel like you need to leave a negative one, please just write it on a piece of paper and throw it our]t instead. We have had to make some very big decisions and we are happy with the outcome and so is Mason! Medication has been the right decision for our health, Mason’s health both Mentally and Physically. 

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 a child with Autism get his Ipad stolen.

This post has been crossed off click here to see why!

It has happened folks and I am sick to my stomach. Yesterday we took Mason to Children’s Hospital for his GI appointment, which didn’t go great by the way. Mason was given more meds and we have come to a point with his Reflux they can’t do much more without getting really invasive, possibility of a Major surgery or two. So Mason now has to go back to see ENT, to see just how swollen his voice box & throat are. But all of this was made so much worse.

Most of you know or have seen Mason with his ipad, the ipad I worked really hard to pay for and just this past January I finally bought. We bring the ipad everywhere with us, it helps keep Mason calm and busy when we go out. His therapists have been busy building his new Autism program around having the ipad. Children with Autism use ipads to communicate, for social stories to help with the anxiety of going places and they are great when you are out and there is a change of plans. Meltdowns have decreased significantly when out with the ipad. Mason’s therapists were going to being using the ipad for his daily routines and all visuals needed. Mason really likes to watch videos of people doing normal daily things, so we have also been slowly compiling videos so we can teach him with videos. We love Mason’s ipad and so does Mason, and not in a “typical” kid way.

Back to yesterday.

 

We got home from the hospital, the boys were half asleep and we just wanted to get them inside. So we got out of the van and I grabbed Mason’s backpack with his very expensive pump off the top of my bag. We went inside. My purse with my wallet, make up and Mason’s ipad were left in my van in front of our house. Within one and a half hours it was all gone.

Stollen. Some awful person stole from a child with Special Needs and a family, they stole more than just possessions. Right outside of our house, in an area that you think is safe. After talking to a bunch of the neighbours who leave their purses in their vehicles and even their houses unlocked i don’t feel so guilty. Kinda. I just feel sick to my stomach.

I feel like an idiot, how could I leave something of so much worth, just sitting there for the taking. Worst still I have no idea how to tell Mason. Do I wait until he asks for it? I am just so upset. Not only did they get the ipad, they got my wallet with all my ID, bank cards, the kids CareCards and gift cards. I had a $100 Spa Utopia gift card that my mother in law gave me for my birthday. I hadn’t spent it yet, felt guilty spending that kind of money on something like that, something for only me. And now someone who doesn’t deserve it is going spend it. Nick and I also had a date night out gift card in my wallet. Sick to my stomach.

 

I know that you have all helped out our family in anyway you could in the past, including buying all our kids their christmas presents last year. As much as I don’t want to ask I am going to.

 

We are going to be fundraising to be able to purchase Mason’s ipad again. I have not worked out any details of what we are going to be doing yet, but if you are interested in helping out let me know.

 

We are also entering every contest giving away an ipad, so if you know of any could you please let us know!

 

Thank you for all your support in whatever way you can support us.

 

I am just so sick about having to explain to Mason someone stole his ipad. I am not ready for the meltdowns that are about to happen.

 

 

 

Helping Mason
 

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 Kept Secret-An Auction for Mason

Once again my you all have SHOCKED me.
Shocked, shaken, and rocked me to the core.
I have no idea how you all did it?
So to those who don’t know the best kept history…
Crystal from Domestic, But Not Martha has been scheming for a couple weeks.
Along with several amazing people, Crystal has thrown an online Auction for Mason together.
I don’t even know what to say anymore.
Again the support from all of you on-line people along with in real life people…
it’s just been so needed.
You have all lifted my spirits when I was so tired.
God is SO good.
Please go check out the deals you can get online, and all the funds are going directly to Mason and our family!
I am really at a loss for words, cause I have no idea how to even begin to show you how much this all means. 
So forgive me.
They will come.
The Sears Fam

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

It has been a day times ten.

Both Mason & I are really tired after today.
I don’t know how today went or how I feel about it.
I feel like I sat back & watched what happened. 
I didn’t fight for him today…
I guess when I got there I was just kinda done fighting on my own.
I left it fully up to God.
And it’s about time I did.
So will Mason get the help he needs?
I am having faith in God that he will.
If he doesn’t I may fall apart, {fair warning}.
So I am exhausted & it’s 8pm. 
I am going to bed. 
I plan on writing a little more tomorrow.
But now I need sleep more than I need anything.
Sweet dreams.
I love you all more than I can explain.
The Sears Fam
Ps. If I do lose it please stick around to help me pick up the pieces, K?
Pps. I burnt my finger when I made Mac & cheese for my dinner. It is so bad I felt nothing for one hour, now it’s all I can feel.
Ppps. Dear Hubs, you should have bought me these pots for Mother’s Day. I need burn free handles on my pots, I am too tired to remember to grab the gloves. 

Today could change everything.

Just writing this is making me lose it.
In the past months Mason has met with a new Pediatrician who specializes in Autism.
He met with Karen a Speech Pathologist.
He met briefly with a new Physiologist.
Mason has had many development tests done in the past couple months. 
His tests have shown a very large drop in development. 
His mental health test scored six times the worry point.
Six times the worry point for his age of 31 months.
Many of the professionals that see Mason ask when he is going to get a diagnose.
Everyone says Mason is “just such a complex, difficult case”.
As if we didn’t know that.
Mason has finished the speech part of the Autism Assessment.
He scored three percent overall for his age.
The SP believes Mason should fit the spectrum.
The pediatrician thinks he should fit the spectrum.
Today Mason has his Autism Physc. Evaluation.
Although Mason has met with her once & she says she has seen plenty of his behaviors.
We are really nervous. 
We are paying for the Autism Assessment for the second time this year. 
We all know that as Mason gets older he will get a diagnose of High functioning Autism.
It’s just by then it’ll be too late for early intervention.
By then my son could be gone.
Who Mason once was…
We want to keep the glimpses we still see.
The bits of happiness that are still there.
The decline in of “Mason” in the past 7 months is incredible.
All this being said, Mason has times were he can be such a fun little guy.
We are just so scared of being let down again.
To afraid to think that we are actually could get some help from the government.
We are truly afraid & I believe we are all just guarding our spirits.
If Mason gets the diagnose of Autism he will receive the therapy he needs.
It’ll give the government another reason to say he is not “normal” & his situation isn’t changing anytime soon.
They will really have to consider paying for his medical equipment. 
I don’t see how they could say no.
Our lives would change shape & for the better.
Mason needs that therapy, without it…
We simply cannot afford the therapy.
And we are still waiting to even get our appointment with the At-Home Nurse for her assessment saying he needs the medical funding.
We have been turned down twice.
We should find out this week or next the Genetic Results as well.
Does Mason really have Smith-Magenis Syndrome? 
We need this question answered. 
We have been waiting for 19 weeks now. 

Things at Nick’s work have been really shaken up for the last two years.
They fired people, God saved Nick’s job & put people on his side.
Over the summer his work put in a new Press…
For those who don’t know Nick prints newspapers & flyers.
So in the summer Nick was in training for the new press, he lost $5 an hour for the summer.
It was a substantial loss, he also worked awful hours & was never home.
But he had moved over to the new press for the perks.
We have enjoyed those perks for the last two months.
He had three twelve hour night shifts a week, then worked one to two overtime shifts.
Financially we were kinda of getting our all regular bills caught up.
Now his General Manager has been fired.
This is one of the main guys who was on Nick’s side. 
There is talk about changing the shifts by new management & he would be working 5 nights a week. 
Hopefully having two days off in a row together, but maybe not.
This leaves just two nights a week for overtime.
Money is going to be SO tight again.
And I will be up five nights a week anywhere from 6-12 times a night with Mason & the other boys.
Bring on the triple time exhaustion for Nick & I.
We have also lost $1300 a month due to taxes & a regular donation we have had for the past 11 months being done.
We knew it was going to happen, but its awful none the less.
Last year somehow our lovely government screwed up & couldn’t fix giving me $700 a month. 
God was providing.
Trusting that the outcome of today is how God is going to provide now.
So as you can see all of this puts added stress on today.
Mason really needs help & he really needs at least this one part of his diagnose.
We realize that Mason will end up with several diagnoses in the end, but this one…
it counts for now.
It could change the rest of Mason’s life for the good.
It sounds crazy, wishing for a diagnose of Autism to happen…
but we all know it’s there. 
Please say an extra prayer for today, Mason has a knack for doing too well in formal assessments.
We are trying to have faith in God, that this is where we are being led.
We have always left our finances up to God. 
God can provide & he truly does.
But there is still anxiety about it.
It’s only human right?
Our world has been different then we expected.
This is definetly not how I imagined things.
We have been talking about how our future as parents has changed…
And we strangely are at peace with it all.

In some “Drop us to our knees” news, there are some really great people in this world.
People posting left & right about Mason.
People sharing their thoughts, words, & prayers with us.
And then there is this one thing…
We got news yesterday that we are to write Christmas wish lists for our boys.
Some lovely people are going to buy them their Christmas gifts.
We are just so thankful.
Tears are strolling as I write this.
We really like giving our boys the world…
this Christmas we weren’t going to be able to give them much.
My Christmas wish’s are…
Mason to become healthy & happy. Whole.
Josh to have peace, the attention he needs. To be happy at home.
Carter to also become healthy & eat. Just. Eat & drink regular liquids.
Nick to have some time to rest.
For myself, rest & take care of myself properly.
Our family has felt the outpouring of prayers & support from everyone.
It has been truly amazing.
But I am going to ask again. 
Please say an extra prayer for Mason @ 12:30 Pacific time.
We really need the best outcome. 
We also understand that God has a plan.
We are trusting.
The Sears Fam