The Sears Fam

I have been a terrible...

noreply@blogger.com (Dana Sears) — Wed, 13 Jul 2011 05:58:00 +0000

I have been a terrible Blogger among other things.

I thought this year was going to be easier, but alas the difficulties are much different.

I am not going to bore you with the million and yes there have been a million of them, updates. But I can't just start blogging again and leave you feeling all lost in my life, here are a few.

Nick's work changed his shifts and we were never going to see him again, seriously. So he quit, yep last week he quit. Nick starts school in the fall, he is going to be gaining his welding ticket and then hopefully a job. How are we going to live you ask? His work wants to keep him and they may give him the shifts he wants that will work around his school while he is in school. Praying that they do kinda, we will NEVER see Nick Monday to friday he will be gone from 6:30am till 11:45pm. This will only be for 7 months so I think I can handle it. ::vomiting in my mouth as I say that::

We are seriously looking at moving to Alberta when he is done, the health care for Mason would be so much better.

Speaking of Mason he has had a rough few months, but is loving living with G & G. Yes I am back living with my parents for a bit. Anyways, back to Mason who has started Anti-Seizure meds and is now only up a few times a night if that. And for the last four days he has got up after 7:30am... Can I get an amen!! I have been praying so hard that one day I would not have to get up at 5am. Oh I feel like a new person! Mason also started motility meds and his vomiting has decreased tremendously. I am thankful to be started figuring out how to deal with some of the medical issues.

In other news Nick's grandma passed away and left us strict instructions to use the money we got for a family "something". And hey after what we have been through we needed that something. We did pay off some of our debt about 8 thousand dollars in fact. But we also bought a used Tent Trailer that we have been using lots this summer and intent to use a lot more. It has been nice getting away from it all and better still we camp for free because of the government program Mason got on. So we get family vacations for the price of gas!!!

In other news I got smoke inhalation and will never touch another campfire again. In fact Dr. said no more fires this summer. This is how long it could take for my lungs to heal. I feel like an old lady totally winded after doing anything, including sitting on a chair. That says it all.

The MOST important news is that I am headed to Blogher. Yes people BLOGHER! I am so excited and need sponsors. So hit me up! I will wear your items, hand out business cards and wll do the chicken dance if you really want me too.

I need clothes, accessories and money.

Thanks ya'll

Ok goodnight!

Motherhood: Highs and Lows

noreply@blogger.com (Dana Sears) — Thu, 05 May 2011 16:37:00 +0000

I am a Mother. Wow.

It often feels weird to say it, sometimes it feels surreal. I have these out of body experiences of shock, I made these? These are mine? Followed by the feelings of unconditional love, accomplishment and then the feeling of where can I run?

I was a young married woman, followed by a young Mom and now we are BIG young family striving to make it to bedtime. When I think about the past five years, especially the last three there have been so many highs and lows as a Mother.

Here are a few of mine in the past five years, unfiltered.

High: The birth of my Son, Joshua.

Low: The first night home, in the middle of the night Josh had his first breastfed “blow out” in the middle of a diaper change. I kid you not, there was poop everywhere within in a four feet radius. I am talking like someone took a poop bomb and exploded it everywhere. My hair will never be the same. Don’t act like you don’t know what I am talking about. The “perfect” nursery we had gotten ready for him...not so ready anymore.

High: Purchasing a new house & finding out we were expecting again. Buying a new Dog that needed to pull one of us ten blocks six times a day so he didn’t eat everything we owned.

Low: Losing a little baby girl I very shortly knew was there. And the Dog had to go too.

High: Finding out I was pregnant three weeks after losing her.

High: Having my second Son, Mason.

Low: Going back to the hospital five days after he was born because he was barely breathing. Knowing right then something was not right, and the Drs. dismissing that something was seriously wrong.

High: Realizing that no matter what could or was wrong he was my Son, we could do this.

Low: Finding out my Son was dying due to Doctor neglect and that he would need life saving surgery. Along with equipment that wasn’t covered. Losing our home and not understanding what was wrong with Mason.

High: Taking at dollar store pregnancy test, throwing it out before actually waiting for the very faint line. To having it fall on the floor face up telling me I was pregnant while trying to hide the fact I took a pregnancy test as my MIL was trying to take out my garbage. All while living in my MILs one bed plus den apartment, not able to tell my husband for fear of the hysterical laughter that he would later do in the brand new not enough seater car we had bought three days before, on the way to church. To having the Dr. come in the room, head hung in shame saying he was so sorry. Explaining to me how I got pregnant since there was no way I could be. “I am on Birth Control, nursing, Aunt Flow hasn’t visited since the birth of Mason FIVE months ago”.

Low: The shame I felt for being pregnant again while dealing a very sick son.

High: My MIL and Husband potty training Josh.

High: Josh becoming a little Man and going to an excelled preschool.

Low: Realizing it is all going by so fast & I was missing out on Josh’s little life.

High: Sitting in the van coming home from a Doctors appointment hearing “Mama” for the first time from Mason’s mouth at eighteen months.

Highs: The birth of my third son Carter. Ok lets be real, when I went home from the hospital with Carter. “Birth” is never a high, its right after birth that is the high.

Low: Going back to the hospital three weeks later for suspected CP, or another “Mason”.

High: Finding out that Carter was going to be ok, he just had extreme GERD causing Sandifers Syndrome. Medication would change him so much

Lows: Suddenly losing the happy, very “there” boy Mason was.

Low: Realizing that Josh has ADHD.

High: Realizing how gifted Josh is.

High: Carter clapping for the first time, followed by Mason’s first time clapping. Carter waving for the first time, followed by Mason waving for the first time...we are still on this high.

High: Realizing why God gave us Carter.

Low: Feeling the shame of caring what others thought.

High: Starting this Blog.

High: Sharing our life, no filter needed.

High: Creating life long relationships with wonderful women I have never met.

Low: Finding out that Mason has Smith-Magenis Syndrome and Autism.

High: Finding out that Mason has Smith-Magenis Syndrome and Autism.

High: Realizing that no matter what came our way that life would work it’s way out as long as we trusted God and continued to fight.

High: Learning to love myself for the Mother I am, no matter where my faults may lie.

High: Mason coming up to me rubbing my leg and telling me “I love you, you are my family, you are my parents, I will never let you die. You are my family.” A moment of real connection.

High: Joshua cuddling me on the couch, rebuilding the relationship stolen by uncontrollable circumstances. Thanking me for the dinner I actually got to cook for him.

High: Carter always wanting “Mama” to take him to bed, not “Dada”.

There are so many more Highs and lows, alot of lows still left in the past where they belong.

Motherhood is an amazing life altering, character building process.

I will never judge another Mother doing what is best for their child, I have learned that you never know what choices are right. But us Mothers do the best we can.

I have hopes and dreams for accomplishments, sure. But nothing is more important than raising my Sons to be men of God.

I would love to be a Mother to many more, adopted children...I am never doing that pregnant/birth thing again.

God put Joshua, Mason, and Carter into my arms, and told me they were mine.

I am pretty sure that I will never have another put into my arms, God chose me to be their Mother and I am already so blessed.

I believe I may always have one of my children in my home, and I believe I will always stretch myself as far as I can and then God will stretch me a bit further.

My life can be hard, it can feel defeating at times, and negative.
I always try to find the positives...living off the highs of my life.
What my future holds for Motherhood is unclear...

But I do know one thing for sure, I will always be a Mother.

_______________________________________________

The BLOG DESIGN Giveaway!

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To enter: (Please leave a separate comment for each entry)

1. Follow this Blog

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Cheers!

**You may use $45 to apply to any of my services.

Motherhood: Includes...

noreply@blogger.com (Dana Sears) — Wed, 04 May 2011 07:30:00 +0000

Two beautiful Mothers Christine and Nadia, who have been a huge support for for my family are doing this amazing May Blog Hop. It is large group of talented woman sharing there deepest darkest secrets of Motherhood, or maybe just a day in their life. This is a celebration of Motherhood and everything that it brings us. I share only the dark secrets of Motherhood totally unfiltered.

**Be warned the following is not for the expectant Mother, cause it's all a little too late for them.

_____________________________________

Don’t be fooled Motherhood is not for the weak. There are many aspects I never expected...

1. Pregnancy brings all kinds of highlights. Loss of all dignity, saggy breasts, stretch marks (if you don’t have any shut it) and kankles.

2. Breast feeding is hard. Think cracked, bleeding nipples that burn as you feed your non-stop screaming baby. All this is topped of with boobs that cover your once kankles, now ankles that you still can’t see.

3. Poop. A whole lot of it. I am talking Black sticky poop, Breast fed “Poop Bombs” that cover the entire room, Poop Paste that is fun to finger paint with. Oh and Nuggets that are good for throwing at you and “Logs” that you never thought could come out of a child. And there is Purple, Green and Blue Poop...hint don’t feed your child a lot of “Blue Whale” candies. We will leave all the “sick” poops out cause seriously you don’t even want to know. Ok you do, think wretched Vanilla poop, Oh yes. Wretched Vanilla Scented Poop. All you tubie Mom’s know exactly what I am talking about.

4. Sleep. Don’t think you are going to get any. I don’t think I need cover this any further.

5. Baby food is gross unless you make it yourself. And when you make it yourself you get to see all of your work all over the babies face and the floor.

6. Dieting after Childbirth or anytime for that matter. Good luck with that, I live on Coffee and Chocolate. Enough said.

7. Sex. It only happens when it absolutely has too or you decide to be crazy and have more than one child. Don’t be crazy, you’ve been warned.

In all seriousness though I would never change any of this.

Motherhood is full of crazy highs and lows, challenges and rewards.

Motherhood is an amazing life altering, character building process.

I have changed, my perspective on life has changed and my life could only be a little better than it is!

I have three beautiful boys, one living with some very challenging Special Powers. Through these little Men’s short lives they have impacted me more than anything else ever has. I am a “changed” woman, in fact I believe I am now a woman. Before I was just a girl, but thats just where I was in my life. Some say that my family has been through more in the last three years than some go through in a lifetime. I look at as these little boys and God were just molding me for what is to come. Life couldn’t get much worse than some of the times we have been in and walked through. A little scaring is left and probably always will be.

I don’t believe that you are just born a Mother, I believe that every Woman is molded into Motherhood by the children we have. Every Mother has her challenges, some different from others, but I do not believe any challenge is more challenging than another.

Motherhood is not easy, sometimes I could run and hide, and sometimes I do run and hide for a moment or two. And that is ok.

Funny thing, the only thing I would change is for all of my Son’s health to be the best it can be.

I never wanted to be a Mother, until I was a Mother.

Motherhood has made me complete as a human being and as a wife.

Motherhood is full of challenges and surprises at every step, just make sure you enjoy them along the way.

_____________________________________

So I couldn’t stop at just one Motherhood post...

Check in tomorrow for “Motherhood: My Highs & Lows”.

Giveaway: Would you like a new Blog Design? Well I am giving one away...Tomorrow :)

Also please check out the Lovely "Keeping up with The Pickles" tomorrow for their take on Motherhood!

Sitting here wondering...

noreply@blogger.com (Dana Sears) — Mon, 28 Mar 2011 06:35:00 +0000

I should be sleeping.

My body is tired, its needs to rest.

Tomorrow Mason has yet another test at Children's Hospital.

An EEG to be exact.

Since he was in the hospital at 11 months old I thought he needed this test.

But here we are just over two years later...

sitting wondering if Mason has been having seizures all this time.

If it is so, how is it going to change things.

Is there going to be change?

What damage has been or not been done?

Praying for no seizures, praying that if he is having them at all tomorrow will show us.

So in 4 hours I will get up with him for good, gotta get him to fall asleep halfway through the test.

Melatonin will be present.

Long drive in, hoping neither him nor I fall asleep on the way.

Night.

When Reality slaps you in face once more.

noreply@blogger.com (Dana Sears) — Wed, 23 Mar 2011 18:09:00 +0000

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.

noreply@blogger.com (Dana Sears) — Tue, 22 Mar 2011 15:51:00 +0000

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 URL www.SearsFam.com is grounded for 60 days.

noreply@blogger.com (Dana Sears) — Wed, 09 Mar 2011 05:23:00 +0000

That's right people...

The URL www.SearsFam.com is grounded for 60 days.

I didn't get an email to tell me it was renewal time...

they said that sometimes happens.

Why me OH WHY ME..lol

So since I was 19 days late my URL is locked away in a vault for at least 60 days.

And then I have to jump on and try to get it before someone else does.

Moral of the story...

Please use www.DanaSears.com to get to my blogs!

Oh and I dislike GoDaddy.com ALOT today.

Where have I/we been?

noreply@blogger.com (Dana Sears) — Sun, 06 Mar 2011 17:13:00 +0000

I know, I know.

It's been quite awhile, we have been busy.

Here's whats up!

Carter:

- Has had an EVERYTHING infection through out the last 6 weeks. Almost better? Here's hoping anyways!

- Is no longer my baby, in a matter of two days he formed into a dependant early terrible twos toddler. I miss my baby. The head banging temper tantrums that are coming from this child are slightly cute though. I am sure this cuteness we find in his tantrums will be short lived!

- He is finally on completely thin liquids COMPLETELY! This is huge people!

He is such a stinker and I am NOT ready for him to be a big boy yet.

I find myself screaming inside, SOMEONE HOLD ME! LOL

Mason:

- Mason is having some troubles with his health this last month so we have an emergency GI meeting this Monday. New meds and talk of going to a GJ-tube are on the list of topics.

- We have received his appointment for his EEG, looking for the seizures they think he maybe having. Its in early May.

- Still waiting for the appointment for the Sleep study, MRI and Chronic Pain Clinic.

- So many days and nights have been spent talking with so many options discussed. What are we going to do about his therapy? What are we going to do and what are we going to get for funding?

- We have decided with the help of the Child advocate that Night Nursing care is the best option for him and the family. So thats what they are going to be asking for. I am really unsure if that is exactly what we would like. Huh.

-Mason will have a behavioural consultant that will be coming in the home soon to help us and also show Mason's BI what to do. This is all so new to us. All we know and this is the thought from everyone that Mason will go NO where until we get his behaviours under control.

Josh:

- Josh had EXPENSIVE dental surgery this month. The poor boy got my genes in the mouth department. (I already have a partial denture at 26, scary I know)

- Had a better month at school and has Spring Break coming up...Wonder what we are all going to do?

- Josh is at the beginning of reading, and it is so amazing. He just picked it up. Crazy how old they get and how fast!

Nick:

- Been working loads of over time again...Blah. But we need him too so...

- Got himself some running shoes and decided to run 3km the first day back after not running for months. The worst part...he wasn't to affected by it. Again, SOMEONE HOLD ME, as if that is going to happen for me.

- In other news...Nick is boring so there is no more news.

Dana:

- I have been dealing with my health over the last few months, my health sucks.

For those who don't know, which is most of you I was diagnosed with Crohnes when I was fifteen. They then changed my diagnosis to Ulcerative Colitis and then back to Crohnes. SoI really don't know what I exactly have..but let me tell you what ever it is...it is NO longer in remission. I had a few troubles after I had Josh loosing 45 pounds in just 4 weeks, but got meds and got it under control. Since then I have had nothing, until now. I have been suffering with nausea and pain for a few months now. I guess I had a little flare up last week and ended up in the Emerge to get some fluids, they would have liked to keep me so I could see the GI alot sooner. My appointment had been for July and the ER Dr. said I couldn't wait that long. I agree! But I am not able to go into the hospital for a week or so at this point. So I went home and have been doing ok. My appointment has been moved up to April 12th and I am really happy about it! I am ALOT more tired, it's not just my brain thats tired anymore..my body is SO tired. But I just tell myself, "suck it up princess" and I seem to be ok!

- Paper..I have SO much paper coming from every direction to work on. I just re organized all Masons Medical files and papers, since the advicate needs them. I am in the middle of filling out 37 pages of a paperwork for them as well. And then there is Josh's school papers for enrolment for next year, as well as we are asking for assistance to keep him there. Still in a fight with the government about the $6000 owing. When really they should owe us THOUSANDS!

- Blog design business is doing well and I am now working for another HUGE designer

April Showers. This has been a huge blessing as Money has/is so tight! But it is another thing on my plate...good thing its something I enjoy!

- I got a great pair of running shoes that have yet to come out of the box...hoping I get up the nerves soon.

- THE HOUSE HUNT IS STILL ON! We have yet to find a house that we like that the owners haven't turned around to decide they are selling instead. Ugh. God will provide a house...he will!

Coming Events:

Mason's 3rd Birthday is March 15!

- Gifts of jeans in size three would be lovely...(cough..Family are you listening??) LOL

Dana's 27th Birthday is March 23rd and I am feeling alot older. There seems to be a feeling of a huge difference in 26 to 27.

-I need a gift too..LOL NEED. Ok I don't need...but I really WANT this.

I WANT it to say, "In him I trust" on the front & "For those I luv" on the backside. Also with the Sturdy Fine link chain. (Hint Hint)

::wink wink::

Did you get the mesage? LOL

*Want is not Need. And I really don't need. Which kinda stinks..LOL Love you all anyways :)

Since I seem to be rambling...I am going to stop.

Check in for my next post which is HALF written...

Topic: "Retarded"

Another reason I love this Man.

noreply@blogger.com (Dana Sears) — Fri, 11 Feb 2011 04:23:00 +0000

Today was a follow up appointment for Mason at the GI clinic.

These appointments are at least two hours long and I usually have to go to them on my own with Mason.

But we have a lovely girl who took care of Carter for us today so Nick and I go to take Mason together ALONE!

So going into this appointment we see the GI Dr. an OT, Dietician and a social worker.

It is alot of people who need to have their time to speak and get info.

Mason only needs to be in the room while the Dr. is talking and doing his exam, after that Mason has had enough.

The other people only need me...so I sent Nick out of the room with Mason.

They could go for a walk, play out in the waiting room or whatever...

So off they went!

I get through all the different discussions and my brain is now fried...

and its about an hour and a half later.

I finish up with the thank yous and goodbyes.

I go to put everything in my bag and see my phone flashing so I pick it up.

There was 28 messages all from Nick and Mason:

Do you have the other shoe?

Found it

Coffee now or later?

What's up?

R u still in there?

Dana

Why don't you respond?

Hello

R u alive?

Have you been kidnapped?

I'm getting worried...

Is everything ok?

Dana

Where are you?

Your coffee is getting cold

When are you coming back?

Have you left us forever?

We are sorry for whatever we have done please come back.

We miss you

Have you fallen?

Can you get up?

Are you sure?

Ok I think we are going home now.

I guess it's just me and the boys now.

We will miss you.

I hope you will miss us too.

Needless to say I came out of a stressful and NOT fun appointment laughing to a cold coffee.

Oh and the "fallen" joke is a reference to me falling down the stairs yesterday...

Yes, I hurt and bad.

Oh how I love him.

The Last week.

noreply@blogger.com (Dana Sears) — Wed, 09 Feb 2011 07:11:00 +0000

Last friday I finally had it.

I called the company we are working with for Mason and told them I was hiring someone.

Mason has this money that is just sitting there...waiting for everyone to get the game together.

I have and feel completely out of control of our lives right now.

I have no idea what is going to happen in the next few months.

I have no idea where we are going to live...

if we are going to get the funding that Mason really needs...

And what therapy is going to look like.

Everything is out of control.

So I took control of one thing.

I hired this lovely girl.

She actually took charge a couple of times and dealt with Mason's meltdowns great.

It's only the second day,

I am just hoping that she is okay with our crazy family...lol

Hopefully this works out for as long as it needs to work out.

Today I feel a little lighter.

And you know what, it feels really good.

I actually have been able to cook the boys dinner two nights in a row, NOT in the microwave.

It maybe silly, but I cried tonight.

Just thinking about how great it was to be able to cook something on the stove.

I miss the "normal" that used to be our life.

I am just so looking forward to being able to do somethings that a Mom should be able to do.

I don't think I will take for granted actually being able to cook wholesome food for my family again.

I also got to go to the bathroom by myself TWICE today...lol

It's going to be weird always having people in my house, but I guess it's the new "us" for this season of our lives.

So we were on the news today.

Kinda ~~loving~~ the editing they did...

They edited it to look like I said that Mason's feeding pump cost $7000, I actually said that Variety gave us $7000 worth of supplies. They are really good at editing...go figure.

Anyways...just thought you other tubie Mom's would want to know we didn't get ripped off for the price of our pump.

Variety-The Children's Charity has there annual "Show of Hearts" Telethon on this weekend.

For those who don't know without Variety I don't even know what would have happened.

They have been there when NO ONE else was or could be.

They bought Mason his feeding pump and the cute (but not so cute) little backpack Mason carries around.

Mason will also be on the Telethon this Sunday from 1-2 and 2-3pm on Global BC TV.

Here is the link to watch the story from today...

They say the Camera adds ten pounds...

I am so going to go running as soon as I own a pair of running shoes.

Anyone got a pair of size seven Nikes... lol!

My Blog Design business is starting to pickup and it is really exciting.

I currently have two giveaways for Blog Designs so go over to DBD to enter!

Hope you all have a great week!

The Sears Fam

Church.

noreply@blogger.com (Dana Sears) — Thu, 27 Jan 2011 07:43:00 +0000

So I lost it on Saturday.

I ~~had~~ have had enough and I needed to get it all out.

I have found myself lost lately.

I lost my ~~will~~ drive to continue fighting, I am tired.

I feel like I won a HUGE fight and I should be SO happy.

And please don't get me wrong I am happy, but tired happy.

We won the fight and I just need some time to build up for the next.

I know that it is just really starting and I just can't wait any longer...

I need it to start now.

I just want to be all set up and for life to get easier.

I am at peace.

Church, I went to church on Sunday.

It had been awhile and it was SO good.

I just felt the spirit flow over me with peace.

And I have felt quite relieved.

I am thinking about finally getting baptized this february.

I think it's time, this is about me and it can finally be about me.

There are no babies in my belly...

The stress hasn't been so bad this week.

I am so truly grateful for everyone's support and everyone's hugs, whether IRL or not!

Carter had his appointment at Children's Hospital today.

It was nothing but good news, which was a breath of fresh air!

We left being told that we had a "really great healthy boy".

His Sandifer's Syndrome is no more as long as he stays on his GERD meds.

He has a good amount of fat on his body and he CAN swallow thin liquids.

So in the weeks to come we will be working hard to get Carter off thickened liquids.

I am screaming joy inside today, we all are.

Just a little note about Carter and his helmet.

Most people know that Carter got a very serious concussion at the beginning of the month, and well he is still not healed.

One of the side effects of his concussion is just being uncoordinated, because of this he is falling ALOT.

Needless to say he has hit his head several more times, and passed out on Saturday again.

On Sunday he fell several times, a couple were really bad.

He bit through his tongue in one hit and chipped two teeth in another.

So to the Dr. we went.

It seems his poor brain hasn't had the time to heal properly because of all the repeated hits.

So it was decided that he will be wearing a helmet for 1-3 weeks to allow his brain to heal.

He looks pretty cute with his bike helmet on.

We opted not to payed the $75 for a one time use helmet and just used the bike helmet instead.

The only problem with the helmet so far?

Carter believes he should be riding his bike all day.

I kinda find it cute hearing him yell at high pitches "bik" all day.

Seriously, I love it.

Communication is really good people!

So today ends positive and I am ready for what tomorrow will bring.

I am sure it's going to have it's challenges, but I am ready.

We are ready.

Isn't he just to cute for words!

It's been a very hard month.

noreply@blogger.com (Dana Sears) — Sun, 23 Jan 2011 05:57:00 +0000

As the months, weeks and days have gone by I have lost more of the son I thought I had.

Tonight I put the boys to bed, but Carter cried and hard.

I went and picked him up, I could feel that he needed me...

his body just relaxed deep into mine.

So I brought him downstairs to sit with me.

Carter does this once and awhile, he never cries to go to bed.

I knew he needed me.

He needed his Mom.

Mason rules our life, there's no easy way to say it.

He dictates what everyone does from minute to minute.

Where and how we live, shop, eat and play.

Life is hard for Mason.

Life is hard for Joshua and for Carter.

Life is hard for Nick and for myself.

This life is not what I thought of "living".

Sometimes I hate that this is my life.

Sometimes I dream about what life could have, should have been.

I do not know Joshua, he does not talk to me.

He lives in stress, fear and wondering.

I have lost him somewhere along the way.

And I am lost trying to find him.

Carter is my baby.

He is the one who I never wanted, the one I was embarrassed to be growing.
He is the glue we needed, we need.

Watching Carter grow, develop, and now communicate even without words...

it brings me to tears.

This is what this is supposed to be.

You are supposed to have a connection with your child.

The kisses are healing for my soul.

Carter has never known a life without Mason.

It scares me to think about how much Carter can actually hear me.

Mason has gotten so much worse.

There is nothing positive to report.

They warned us...

they told us he would get worse.

That he would change and that this wasn't going to be easy.

they warned us.

We never thought it would all happen so fast...

1 month warning.

I find myself grieving...

I find myself sick of my "son".

Sick of his sick.

I find myself guilty for being sick of my son.

I love Mason.

I hate that this is what Mason has become.

I hate the pain that he is constantly in.

I hate this situation.

I long to wake up and for it to be all better.

For us to wake up and everyone be healthy.

For the stress, pain, and the nightmares to be gone.

The nightmares.

This month has brought us to Emergency twice already.

Strangely not for Mason.

Carter knocked himself out...

I will never forget the way he felt.

He did it again today.

This time i was not holding him.

It was only for 15 seconds.

Since having Carter I have had awful feelings...

nightmares about losing him, an uneasy feeling.

It is probably the stress from what we went through with Mason at his ages...

I never realized until just recently just how close we have been to actually physically losing our son.

Josh had to go the Emergency last night.

Josh has asthma and had one of the worst if not the worst asthma attack ever.

For 35 minutes we worked with every tool we had to get his breathing under control.

He was really struggling so we left.

The anxiety that slowly creeps in is unbearable.

We get to the hospital his breathing is way more under control.

We wait to see the Dr. to make sure this isn't going to happen again.

As we wait several newborn babies come through the doors...sick babies.

Couple day old babies.

We are sitting with Josh in the same bed...

the bed where Mason was first taken at five days old.

The bed where Mason was found to be barely breathing.

And now there were babies surrounding us... crying there little cries.

Today has been a hard day.

I can't make myself stop re-living those awful moments.

All the awful moments.

Today, this month has been a hard month.

In four days we will be back in Children's hospital,

in the room where they told us that Mason couldn't swallow properly.

In the room where they told me water could kill my son.

The room where our lives changed forever.

The difference is this time we will be there with Carter.

Please pray they find why Carter also has trouble swallowing.

Please pray that is just from reflux.

This is the best option.

Josh is really struggling with life, with our life these past few months.

Please pray that he can find peace.

That we can find peace.

Mason needs help.

We need our Respite.

We need Mason's therapy, we need someone to help him.

We don't want to wait anymore.

We have been going for 34 months...

we have waited long enough.

Are you listening?

We are all so tired.

This is what Special Powers can do to a family.

I have hope

We need to have hope.

Because this is not what life is supposed to be.

There is supposed to be quality in life.
Mason has none.
The rest of us don't really have much either.
But I know that this can get better.
We just need the ************ to step up and do their part.

Life is going to get better... I believe this.
This is what I need to do to keep going.
I am believing.

BLOG UNDER CONSTUCTION..again!

noreply@blogger.com (Dana Sears) — Wed, 19 Jan 2011 19:34:00 +0000

Just need a day to fix my Blog all pretty!

The Best Kept Secret-An Auction for Mason

noreply@blogger.com (Dana Sears) — Wed, 12 Jan 2011 07:09:00 +0000

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.

A BIG Favor!

noreply@blogger.com (Dana Sears) — Mon, 10 Jan 2011 17:17:00 +0000

It is seems that I am about to be all needy again...

But I really NEED your help!

I have entered a Design Blog Challenge over at April Shower's.

April is an amazing Designer and I have learned so much from her.

Much to her horror I am sure, she is my Mentor.

I really truly Love that woman for all that she has done.

Okay enough with the mushy stuff!!

The prize package is amazing and I would really give my Design business the push it needs.

SO PLEASE GO VOTE FOR ME??

Blog Design Contest

I have Designed #9 & would love to know what you think?

Once again thank you all for your Support!

Make sure you check out my post from this early today,

"It's in the Bag"

It’s In the Bag

noreply@blogger.com (Dana Sears) — Mon, 10 Jan 2011 13:00:00 +0000

I am super excited to be joining "A Hasty Life" Blog Hop.

Believe it or not I have not ever really joined a hop that I had to post for!

But when it comes to a Bag, I am there.

So this is my latest.

It is from a company called, "The Sac".

For Christmas of 2009 I received two messenger styles bags from The Sac and fell in LOVE with their bags.

When I spotted this Bag, I just happened to be with my Mom.

My Mom being who she is knew I was in mad love with this bag. She also knew that I would never spend money on myself like that.

This Christmas my Sister drew my name out out of the hat...

My Mom told exactly what I wanted, not needed, but really wanted.

This...

It is a soft red leather with leather rope straps that retails for $59.99.

Now my bag has to be really big and easily organizable.

Read "big" and "organized" as slightly OCD about a bag being organized.

I have three little boys, two still in diapers and no matter what as long as I live I will always have baby wipes in my bag.

So this is the Grown up portion of "The Sak".

I really love my wallet, it's from "Element" a skateboard apparel company. It has plenty of card spots, two spots for paper items and two zipper pouches.

I never go any where without my iphone and dont remember how I lived life without it.

Next comes a pen, lipgloss, Starbucks Via instant coffee pouches, gum for after the coffee, Aleve for going anywhere with my kids and Victoria Secret Hand Lotion.

These are items that are always in my bag.

This is the Children portion of "The Sak".

I have three children, Josh is five, Mason is almost three and Carter is eighteen months.

Mason has "Special Powers", because of his "SP" he is tube fed, so I carry some extras in "The Sak".

The MUST not leave the house without or you will be turning back home list:

- Diaper wipes

- 4 diapers minimum

- 1 Syringe

- 1 Can of Peptamin Jr.

- 4 "Simply Thick" for both Mason & Carter (liquid thickener)

- 2 Soothers at LEAST

- 3 Fruit snacks or some Gold Fish

- 2 cups made with thickener, plus a cup for Josh when he is with us.

The last item and the newest item is Mason's ipad.

Many of the parents of Special Powered kids have started using ipads for communication and anxiety. So far in our very short time of having it Mason along with all of us are really loving it.

I can tell that it will be something that goes everywhere with us.

::makes a spot in the bag for it::

The final weight of "The Sak" is eight pounds when I leave the house.

What's in your bag?

Next post from A Tiny Bit of Sparkle.

Merry Christmas to all!

noreply@blogger.com (Dana Sears) — Sat, 25 Dec 2010 14:46:00 +0000

Wishing you and your a very Merry Christmas.

May God Bless you with Health, Happiness and strength for the next year.

God has worked Miracles in the last year and we could not be happier this Christmas.

Faith, Love and Joy to you.

We have been busy little Bees.

noreply@blogger.com (Dana Sears) — Fri, 24 Dec 2010 18:57:00 +0000

We have been SO busy.

Last Friday started the Christmas spirit and we have yet to slow down!

(We found that Mason is going to have Full Benefits from the Government)

The house is tidy and almost clean...

the tree is finally decorated and the house feels of Christmas.

Decisions are being made.

Josh is home from school for two weeks...

we are driving each other crazy, but enjoying him being home for the most part.

We are taking Josh and his friend to Science World without the other boys next week.

It's going to be a surprise.

Mason has had a really rough month, first with Pneumonia and then just his overall Mental status has been not as good.

We talked with the IDP worker as she came this week.

She had noticed the slipping of "Mason" and how much worse it has gotten.

"We all knew it was going to get worse. Didn't you?"

This was not a question and we knew it wasn't.

Nick replied with, "We didn't think it was going to happen SO fast."

And we really didn't.

We knew things were going to get worse, it just all happened so fast.

My heart has been heavy this week.

I have tried very hard to remain positive and I know now that we will have people working with Mason things can get better.

It's just going to take a lot of ongoing work for the rest of his life.

I guess every once and a while it hits me all over again that this isn't going away.

Many decisions have been made between Nick and I in these past days.

I may not like alot of these decisions,

they may hurt my heart to have to make...

but it's for the best.

Carter has copied some more words in the past few days, which has been a relief for him to start to have some words.

You can still tell he isn't hearing all of the words, but I really don't care at this moment.

His knew copied words are:

Diego

Help

Wow

Uh oh

Racoon

"Di-Di" (Mason's name for soothers)

It has been amazing to watch Carter grow these last weeks.

The best part is he just comes and gives me hugs and kisses

He is worried when someone is hurt and tries to comfort them.

He loves to read all kinds of books not just one over and over.

He is a baby who has grown into a toddler.

A toddler that has emotions.

I have missed these terribly.

It warms my heart in times that it feels so cold.

Carter was a gift from God.

I questioned God over and over about the timing of Carter.

I knew that once God decided that we were ready to know more about Mason, that he knew we would never decide to have more children.

Carter woke in his sleep last night and I rocked him for as long as I could.

For so many reasons.

This past year of blogging and sharing has really changed our lives.

Some people have commented on my "grammar and spelling".

This blog is my journal, my spit it out and I don't care about those things.

I write and I never edit, I feel it would change the integrity of what I have written.

My feelings are my feelings.

Life is so open, there are no secrets and I don't care if people judge us.

I can't thank you enough for all the support we have received from both IRL people and people who are complete face strangers.

We love you all.

Merry Christmas.

God Bless you and yours,

The Best Christmas Present we could ever get.

noreply@blogger.com (Dana Sears) — Fri, 17 Dec 2010 20:27:00 +0000

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

Waiting...Waiting...Waiting...

noreply@blogger.com (Dana Sears) — Thu, 16 Dec 2010 22:25:00 +0000

I am slowly going crazy
1-2-3-4-5-6- switch.
Crazy going slowly am I
6-5-4-3-2-1 switch.
Repeat, faster each time!

We are a bunch of Sickies...

noreply@blogger.com (Dana Sears) — Wed, 15 Dec 2010 05:39:00 +0000

It has been a really hard week.

Mason has Pneumonia...

Carter has Bronchitis...

Josh has a bad cough.

I feel like I was hit by a bus.

It hasn't hit Nick yet & I am hoping it doesn't!

So we are all trying to focus on getting better & getting into the Christmas spirit.

But I feel like we are being held back because the Government decides this thursday whether they are going to cover Mason's medical supplies.

There is also a small possibility they see the NEED for respite.

So with this decision still up in the air I think we are feeling the pressure more than ever.

We are also waiting to here if we are going to have to pay the government the $6000 dollars back.

My Dad said we should tell them if they pay the thousands they owe us then we'll pay it back.

If only it could work that way.

Sigh

We won't be hearing or dealing with any of the Autism funding until after Christmas.

January is going to be a very busy month as will the next several I am sure trying to get everything going and routined.

Have any of you dealt with the start up with Autism therapies and such?

Have any tips for me?

So far I have found NO support groups.

Once again I am going to ask for your prayers for thursday & for the board of people who decide our families future.

It is been a very emotional week so far for me.

Just so you know if we get funding it will be the best Christmas our Family has had to date.

I will be a ball of emotions either way.

If we get funding I am sure I am going to lose it & I will be an Emotional mess.

The fight will be over & maybe I can relax a little.

I want to focus on raising my family instead of trying to keep us together.

If we don't get funding I don't even know what is going to happen.

And I don't even want to think about it cause it's not going to happen.

I am believing, can you believe with me?

With us?

Can I just say how much I love you all.

This last year has been made so much easier for me with the support of good people.

I wish I could meet all of you & give you the BIGGEST hugs!

I will post as soon as we know!

Thank you so much!

I am ok.

noreply@blogger.com (Dana Sears) — Tue, 07 Dec 2010 03:55:00 +0000

It is no secret I have been numb for a month or so now.

Fighting for so long to have Diagnosis, to find out what is really wrong with my son has been draining.

The report is here and it's real.

Finally knowing has been surreal.

My son, my Mason has Smith-Magenis Syndrome & Autism.

And let the tears flow...

numbness is slowly creeping away.

I am ok, this is good.

I needed to feel again.

The report makes it all real.

It means Mason is going to get help now.

Our family is going to get help.

I am ok.

See Autism Report below.

The Autism Report.

noreply@blogger.com (Dana Sears) — Tue, 07 Dec 2010 02:36:00 +0000

Mason's Autism Report for all who want to read it, we have no secrets here.

Reason for Referral:

Mason was referred by his speech-language therapist, for further assessment of possible autism spectrum disorder given concerns noted regarding his social language and play skills.

History of Concerns and Developmental Profile:

Mason lives in Surrey, BC with his parents, Dana and Nicolas, and his two brothers. Mason was born full-term weighing 7lbs, 10oz. He suffered from prolonged failure to thrive in his first year of life. He was in and out of hospital. There are no developmental or behavioural concerns for his brothers. Family history is positive for some concerns with attention and hyperactivity.

Developmentally, Mason receives early childhood intervention services through the Sources Infant Development programs. His infant development consultant is Ms.XXX. She has noted concerns with repetitive behaviours and destructive behaviours. He will repeat conversations and play with the same toys repeatedly. There are concerns about a lack of remorse when he hurts others. Mason is noted to be fearless and will put himself in very dangerous situations. A development assessment was completed in September 2010. At 30 months of age, motor skills were noted to fall at the 24 month age level. Adaptive skills ranged from 21 to 36 months of age and language skills ranged from 24 to 30 months. Personal and social skills were more delayed and fell around the 18 to 24 month level. Mason is noted to prefer repetitive play activities and is interested in repetitive play with keys. He will repeat phrases. Mason was assessed by Occupational therapy in March 2010 by XXXX (Surrey Memory Hospital). He was noted to have a sensory processing disorder and severe oral motor dyspraxia.

A psychological assessment was completed in April 2010 by Dr. XXXX. Results of the developmental assessment noted that his overall skills fell in the High Average range for his age (77th percentile). Skills in all areas fell within expected limits (gross motor, visual reception, fine motor, and receptive/expressive language skills).

Medically, Mason has been diagnosed with a genetic syndrome, Smith-Magenis syndrome. This syndrome is characterized by significant behavioural issues including self-injurious behaviours and significant difficulties controlling aggression. There are often severe tantrums associated with this syndrome which occur throughout the day. Mason’s behavior is consistent with this profile and he will often bite, hit, scratch, and kick his parents and siblings. He has sleep problems including troubles falling asleep and frequent waking during the night. He has a high pain tolerance. Often, children with Smith-Magenis experience developmental delays and there are associated autistic behaviours. Mason has experienced a history of significant feeding difficulties and is completely dependant on G-Tube feeds. He has been diagnosed with gastroesophageal reflux disease (GERD) which is life-threatening. There are safety issues around eating food. Liquids need to be thickened and he needs to be told to swallow each bite while eating.

Current Assessment:

Autism Assessment:

Developmental Review / Autism Symptom Review

The Autism Diagnostic Interview-Revised (ADI-R) was completed with Mason’s mother. She provided the following information regarding Mason’s developmental history and current symptom presentation.

With regard to his language and communication skills, parents report the use of odd and repetitive phrases. He will repeat over and over phrases he has heard and his own made up phrases. It is very difficult to engage in social chat with Mason. He responds in formal ways and responses are short. He often talks about the topic of his dad working and will repeat information over and over about his dad being at work. It is often difficult to know what Mason wants. He will often make inappropriate comments and is unaware these would upset others. There is no history of using others’ body to communicate or pronoun reversals. He has had difficulty with learning his name and

when asked his name would respond with his age. He often makes up his own idiosyncratic words and his own names for people he knows. He engages in verbal rituals and wants to recite sections of favorite t.v. shows, for example. His parents have to recite or sing these songs in a very specific manner or he gets upset. Use of gestures has been delayed but he has started using some gestures in the past few months. He has learned more gestures by copying his younger brother. He needs prompts to use gestures. He will point but it is difficult to know what he is pointing at because of lack of integrated eye contact.

With regard to his social development and play, eye contact is variable. You can catch his eye but it is not sustained. He does engage in some imaginative play by himself (playing tea party, pretending to be Harry Potter) but does not engage much with other children. Social smiling is variable and only occurs with certain people. He generally only shows objects of interest or brings things of interest if he wants or needs something. He never offers to share. He often does not engage in or participate in social play. He generally ignores the other children in group settings. He will cover his head if they approach him. He can get obsessed with a certain child at times and following them around and wrestle them.

With regard to the presence of unusual interests or preoccupations, Mason is very interested in keys. He collects keys and likes to put keys in and out of objects. He likes to collect little bits of things (erasers, foil, bits of paper). He chews on rubber or metal objects. He is obsessed with Harry Potter but is not interested in children’s programs designed for his age. He will often act like Harry Potter. He will throw toys repetitively. He will spin wheels of cars or take cars apart into pieces. He is a very hyperactive boy and he often does not focus on one activity or toy for very long. There are lots of compulsive behaviours and rituals. He has to sit at the same spot at the table, his bed has to made in a very specific manner, and he has to sleep in jeans, for example. He smells everything and licks things. He flaps his hands when excited or when he sees water (at the beach, when washing his hands). He loves spinning.

In sum, given the information provided by Mason’s caregivers, scores on the ADI-R fell in the autistic range in all areas: qualitative abnormalities in communication, qualitative abnormalities in reciprocal social interaction, and engagement in restricted, repetitive, and stereotyped patterns of behaviour. Information regarding developmental history revealed the presence of developmental concerns prior to age 3.

Assessment of Child’s Presentation and Behavior

The Autism Diagnostic Observation Schedule – Module 1 (ADOS) was completed with Mason.

With regard to his language and communication, Mason did speak in phrases and sentences during the assessment. There was no immediate echolalia but speech was quite repetitive. He had a few phrases he would repeat over and over at times. He did point at objects of interest but this was not consistently coordinated with eye contact. Use of gestures was limited. It was difficult to have a sustained or back and forth conversation with Mason. He did not respond to conversational attempts at times. He rarely made requests and would just reach for objects of interests without asking. Voice intonation was appropriate.

With regard to his reciprocal social interactions, eye contact was variable and often not sustained. Mason was a generally happy child and did smile at others. He did not always respond to social smiling and responses were often on his own terms. He did not respond consistently to his name being called by either the examiner or his mother. He did give objects to others at times but did not show objects of interest on a regular basis. He did not respond to joint attention tasks. With regard to his play behaviors, play was repetitive with particular toys and imaginary play was limited. He would repeatedly throw the same toy or play with keys. He smelled objects. He was quite aggressive in his play and in interactions with others with minimal awareness of the impact of these behaviours on others. There was no engagement in hand or finger mannerisms.

In sum, scores on the ADOS fell in the autism spectrum range in the areas of Communication and Reciprocal Social Interactions. The combined Communication and Social Interaction score fell in the autism spectrum range.

Videos of Mason in social and group settings were viewed. In group settings with Mason, he is noted to be off on his own and engaged in a solitary activity of interest. He does not participate in group activity or circle time. He can just get up and leave a situation or room without awareness of others in the room. While he can be very active in certain situations, he was noted to sit quietly when engaged in a repetitive interest or engaged in non-functional play (repetitively playing with someone’s shoe).

Language

A speech-language assessment was completed by XXXX as part of the current assessment process. Language skills fell within average for his age and expressive language skills are age appropriate. Social and pragmatic use of language is significantly delayed, however. Please refer to complete speech-language report for details.

Summary:

Mason is a 2 year old boy who was referred for an assessment for suspected autism spectrum disorder by his speech-language pathologist. The results of the current assessment found that Mason does meet criteria for an autism spectrum disorder. He meets DSM-IV-TR (Diagnostic and Statistical Manual of Mental Disorders, Fourth edition, Text Revision) criteria for a diagnosis of Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS), given the milder nature of some areas assessed and presence of social initiative at times, although on his own terms. These findings were based on clinical interviews, review of developmental history, and interactions and observations of Mason, including the use of standardized instruments for the assessment of autism symptoms (ADOS and ADI-R). While Mason can be responsive to others at times, his responses are very inconsistent. He responds better to adults but has no interest or response to peers. He engages in repetitive and unusual activities of interest. Language skills are good but he often does not initiate or respond to day to day conversations. He repeats certain phrases or talks repetitively about topics of interest to him.

Cognitively, Mason is high-functioning and language skills are within expectations. Despite these age-appropriate cognitive and language skills, social and play skills are significantly delayed. Mason has difficulties using language appropriately in social contexts

and play is very repetitive. Socially, responses are variable and he is often on his own terms. He engages in some unusual interests.

Mason has Smith-Magenis syndrome and children with this syndrome can often also display autistic behaviours and have co-diagnoses of an autism spectrum disorder. Mason does not exhibit the global developmental delays often associated with this syndrome, but despite his higher cognitive and language skills, exhibits significant impairments in social and play skills. The behaviours of children with Smith-Magenis syndrome have been noted to respond to the interventions for their autistic behaviours but it is important to understand Mason’s difficulties in the context of this genetic syndrome. The severe behavioural issues and aggression (including self-injurious behaviours) are associated with Smith-Magenis and have underlying genetic causes. This will be important to understand when working towards managing his behaviours and adapting environments to his needs.

Recommendations:

1. Feedback regarding the current assessment has been provided to Mason’s parents. They have been provided with a copy of the Autism outcome assessment form to initiate autism related funding with the ministry for children and families.

2. Mason will need intensive intervention focused on social skills development, communication, play skills, and behavioural management.

3. Information regarding community resources and support for children with autism spectrum diagnoses is available on the website www.actcommunity.net. Parents can access resources and supports for children with autism. Mason’s parents will also benefit from resources and support in parenting a child with autism. This should, in part, be provided through the autism intervention services recommended to the parents.

4. Speech therapy services are strongly recommended for Mason to develop social communication skills. Please refer to the speech report by XXXX for full details.

5. Children with autism spectrum disorder may benefit from a variety of interventions. In general, when younger, these children need to “learn how to learn”, and the emphasis of beneficial supports can be on speech and language therapy, behavioural intervention, and social skills training. The exact nature and intensity of the intervention will be different for each child and will change over time. General information on different types of intervention strategies and their apparent efficacy can be reviewed via the Knowledge Network (“Autism, the Road Back”; http://www.knowledgenetwork.ca/autism/index.html) and the Canadian Autism Intervention Research Network (http://www.cairn-site.com/research4.html).

6. Mason will require significant intervention focused on social skills development (i.e., eye contact, responding to and initiating social exchanges, communication and speech-language development, behavior skills development, and the development of safety skills. One-to-one intensive therapy is recommended and social exposure to peer groups with adult support. A list of organizations which provide such services for autistic children is available on the ActBC website.

7. Cognitively, Mason skills are within age expectations. Interventions can be geared to his level of understanding. Use of visual supports is recommended given his attention difficulties.

8. A copy of this report should be provided to Mason’s school when parents are registering him for kindergarten. Mason will need an Individualized Education Plan in place at school which contains adaptations or modifications to his educational program. He will require the level of supports and services appropriate for a child with an autism diagnosis. Developing a program which meets his variable needs will be important. While Mason will need intensive supports for behavioural, social and communication needs, how much support he will need for academic development will need to be assessed further once he is in school.

9. Given his young age, reassessment of his cognitive abilities and academic skills will be important in determining appropriate academic goals. This can occur in the school setting once he is in school.

10. Mason will continue to benefit from regular one-to-one time and interaction with his caregivers. Spending time engaging in some activity with Mason each day where he is required to respond to conversation and attempts to engage in social interactions with him will be important to his social and emotional development. Talking with him, engaging in joint play with him, and trying to initiate some back and forth play will be important.

11. If Mason is becoming frustrated, check for triggers that can be dealt with (i.e., Are there sensory issues that are overwhelming him such as noise? Is he having difficulty communicating his needs? Does he need more explanation or warning about changes in his routine and environment??). Provide a designated quite space to calm down as needed.

12. Occupational therapy services are recommended given the significant sensory issues noted for Mason. Strategies for helping him manage his sensory needs will be important.

13. Mason’s overall development should continue to be monitored by his community pediatrician given the complexity of his medical and developmental needs. Concerns with inattention and hyperactivity can be monitored as he gets older.

It was a pleasure working with Mason and his family and I wish them all the best. Given the multiple and significant challenges he presents with, intensive supports will be needed for both Mason and his family. If there is any further information I can provide, please do not hesitate to call me at....

I cried today.

noreply@blogger.com (Dana Sears) — Fri, 03 Dec 2010 06:53:00 +0000

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!

This is forever.

noreply@blogger.com (Dana Sears) — Sat, 27 Nov 2010 07:27:00 +0000

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.