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The New on Mason…

February 19, 2012 4 Comments

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. 

Filed Under: Autism, Mason, Updates

You want to put Mason in a Psychiatric unit??

September 22, 2011 2 Comments

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.

Filed Under: Autism, Mason, Smith-Magenis Syndrome

When a child with Autism get his Ipad stolen.

August 19, 2011 7 Comments

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
 

Filed Under: Autism, Fundraiser, Mason, Uncategorized

When Reality slaps you in face once more.

March 23, 2011 1 Comment
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.

Filed Under: Autism, Smith-Magenis Syndrome

Mason is three.

March 22, 2011 1 Comment

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.

Filed Under: Autism, Emotions, Mason, Smith-Magenis Syndrome

The Best Christmas Present we could ever get.

December 17, 2010 19 Comments
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

Filed Under: Autism, Emotions, Funding, Mason, Smith-Magenis Syndrome

I am ok.

December 7, 2010 7 Comments
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.

The Sears Fam

See Autism Report below.

Filed Under: Autism, Emotions

The Autism Report.

December 7, 2010 4 Comments
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….
The Sears Fam
Filed Under: Autism

I cried today.

December 3, 2010 9 Comments
We were slapped in the face today.
And it hurt.
I guess the “numbness” is finally subsiding & let me tell you it doesn’t feel nice.
The Government got us again.
The Negatives in the last three weeks.
1. Mason was diagnosed with Smith-Magenis Syndrome & Autism.
2. I found out my Identity has been stolen.
Kind of fitting as I felt stuck in someone else’s life.
3. The Government told us today we owe $6000 dollars, they had screwed up last two years & were giving us too much Child tax benefit every month. This is my only income & the only money the government gives Mason. They are garnishing Mason’s Disability Benefit & the Child tax benefit for the next 13 months. I have filled an appeal to not have to pay the money back, but the likely hood of that happening is pretty much nil. 
4. We are now going to have to move to I don’t know where when our Lease is up unless there is some kind of divine intervention.
5. Josh has been to the Principles office & has been punching other children at school.
The Positives in the last three weeks.
1. Mason was diagnosed with Smith-Magenis Syndrome & Autism.
I am just glad to know what we need to do to help Mason.
2. We found out that my Husbands shifts are NOT going to be changing & that means there will still be overtime.
He just worked 12hr shifts 10 out 12 days, poor Man & poor Mama.
3. The Government gave us the Grant to have more extensive Genetic testing to find out what mutations of SMS Mason has. This will help them decide on the best Medical treatments.
This grant is not one that people are usually able to get.
4. After putting my foot down, squeaking some more wheels I got some oil. The At-home Program Nurse was at our home on Monday. In her opinion Mason is dependent in 3.5 out of 4 of the requirements. Now it will be up to the board on Dec 16th to decide if they agree. If they do Mason will get Medical funding. It would be the best Christmas present someone could give us.
5. My Blog Design business is slowly starting to pick up & it couldn’t be at a better time. 
6. Josh is going to be taking the bus as of Monday. This will save 1.5 hrs of driving time, gas & Mine, Mason’s & Carters sanity. And Josh is thrilled to be taking the bus!
7. Josh has started seeing the Councilor at his School.
8. I cried today.
The work to be done: 
1. Get my identity back. Close & open all new bank accounts, call all creditors, get new SIN#, new Drivers, fill out fido paper work, and file a police report.
2. Fill out & get the Drs. to finish filling out paper work for Autism funding & Charity letters.
3. Lots of follow up appointments with several Specialists now that we have a Diagnosis.
4. File the papers for Autism funding & Charity funding.
5….
6……
7……..
8………..
There is so much more to be done, but I am not going to bore you anymore.
Today was a hard day.
I felt like we have taken 3 steps forward to only take 5 steps back.
Tomorrow is a new day & hopefully we can take it on with smiles.
Josh is staying home from school tomorrow so we can go see Santa at a quiet time for Mason. We are then headed to Children’s for Josh’s appointment and Mason’s blood work.
Hoping to post our Santa photos soon! 
Any Millionaires out there that could share some of their wealth with us?
Nope?
Just checking.
Miracles can happen right!
The Sears Fam
Filed Under: Autism, Emotions, Government, Smith-Magenis Syndrome

This is forever.

November 27, 2010 13 Comments
So this may not shock you.
We are sad. 
So very sad that this is not going away.
Mason is who Mason was.
Mason is who God intended him to be.
Is this hard for us, for me?
I don’t know when this won’t be hard for me.
But the realization of it all has begun to sink in.
My son has Special needs and they are not going away.
Mason has Smith-Magenis Syndrome and Autism.
There is much to be done.
There are so many decisions to be made.
Are we ready?
Well we have to be.
This week I called our government office…
the office in charge of paying for all medical supplies.
I left several messages that they were to call me by the end of the day.
“Waiting eight weeks just to get an appointment that would be another eight to twelve weeks away, and then a six to eight week waiting period for the decision was unacceptable”.
I received a message at the end of the day from them, they were leaving for the day.
So I left a message stating that if I had to give my son over to social services in the next six months, it would be on her”.
We would sell every last item we had before giving Mason over.
Just so you know.

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

The Sears Fam
Filed Under: Autism, Smith-Magenis Syndrome
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