Merry Christmas to all!

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.

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.

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...

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...

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.

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.

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.

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!