Not your typical post

So, I’ve held back a few days on writing this post for several reasons…one being that the boys have been super busy and keeping me on my toes, but mainly because I wanted to allow myself to cool down before I used words that I might wish I hadn’t.
This is not the typical post that I have been writing. As I’ve mentioned before, I try to capture fun and happy memories, although I have also shared a few of the frustrating days. But it’s not the autism per say that I am frustrated with this time. On Wednesday, I got a call from Ledgers case manager. I often do, just as a “checking in” call to see how things are going. This call started the same way. I told her we go day to day and we’re managing and getting by. She asked about our opinion on his progress and I told her that we have seen very little in the past few months. To be honest I feel as if we may be regressing. She agreed with me and said that since they have lost their OT services, they can’t seem to get much out of him. Here is the kicker. She then proceeded to ask me if I had specific suggestions or tasks to work on because they (that’s right, the professionals!) were running out of ideas for him. I very calmly, asked her if she could speak to the director about cases that they have had with similar clients to our boy. We ended the conversation at that, and in good terms.
Since hanging up, I have been building and busting with feelings of anxiety and frustration. I realize that he is on the low functioning high needs end of the spectrum, but this conversation made me feel as if they have exhausted their sources and have nothing left to offer our son. If anything he has some of the greatest needs and they don’t know what to do. This is not a new service and I find it hard to believe that in the years they have been operating that they have never encountered a child like ours.
Since our conversation just two days ago I left left a voice message and an email for the director to contact me but have not heard back; I spent over an hour at our community autism centre trying to find out if there were other options to help our son but there isn’t in our city; I called a psychologist in a near by town who we’ve been waiting to see and got an appointment for September; contacted a new speech department and waiting for a call back from them; and lastly, I started researching services in Alberta, and reaching out to families who have packed up and done the same.
It breaks my heart to think that the only service available for Ledger is running out of ideas on how to help him. I don’t want to leave, but if the only service here has done what they can with him, then do I have any other option? If it means helping our sweet boy and giving him a better future, I’ll start packing tonight…

My dates ūüíô

I love our family time. There’s nothing better than when all four of us are together doing something or nothing even!! But I have to admit, as much as I love our together time, I really cherish the moments when I have special time with one of the boys!
The first weekend in July, Jeff and I took off for two nights, just the two of us! We hopped on a quick flight to Ottawa to attend a beautiful wedding of a mutual friend! It was so great to meet up with some old friends and feel like teenagers all over again!

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Tucker and I have a date almost ever morning. We drop Ledger off at intervention and fill our morning with coffee dates, shopping, walks, or play dates! He’s getting quite the little personality and loves spending time with me while Ledger’s at school! Isn’t he cute ūüôā

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My alone time with Ledger is rare! We usually always have Tucker with us, unless he is sleeping. Although, usually once every two weeks I get to take Ledger on a lunch date. I pick him up from school, take him for lunch, and then we go to speech (while Tucker hangs out with Nana or Granny!). Today was my favourite date with him so far! I packed us a lunch, and we had a picnic in the park while we watched the ducks. I think
Ledger enjoyed it as much as I did, but I’ll let you be the judge…

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I think I’m a pretty lucky girl to have these three handsome boys ūüíô

Happy Birthday Tucker

On Friday, our sweet Tucker had his first birthday! We celebrated with our family and friends by having a cowboy themed party complete with hay bales, a photo booth, and of course, cow print cake.
What an awesome year it has been. He is truly a little blessing in our family. He keeps us smiling, keeps us busy and is the perfect little brother for Ledger. I don’t want to jinx it but I even think they are starting to bond. Tucker is without a doubt fascinated with big brother Ledger. And although Ledger still has issues with how loud and how intrusive Tucker can be, he is showing interest in his own little ways. I flipped through some of the photos on my phone and have nothing but a smile on my face when I reflect on some of the cute little moments I’ve watched them share. Of course, they’re not all cute haha but we try to remember the best memories. I am so glad that these two boys have each other and I look forward to watching them grow and bond everyday. Take a peak….

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Told ya you’d smile ūüíô

Cloudy Clarification

Thursday already!¬† Jeez!¬† Those two boys are really keeping me busy!¬† I’m having a hard time keeping up with everything…

Tuesday night we went to a meeting about the new changes to our autism intervention¬†that we’ve all had on our minds.¬† It was an interesting meeting, and also a frustrating one all at the same time.¬†

Good news that came from the meeting was that the 95% required attendance is on hold for the time being!¬† What does that mean?¬† Well, if you ask, you won’t get a straight answer, but basically they are waiting for the right time to implement this regulation.¬† They couldn’t explain when this “right time” would be, but for now, it is on hold.¬† Fine with me!¬† They did however, say that if your child has additional health issues that the agency your child goes to¬†could have special exceptions for your child.¬†¬†They also said that medical appointments will not be counted against the child as long as they are actual appointments.¬† As I’ve mention before, we are very lucky with the fact that Ledger has a relatively strong immune system and very rarely gets the flu.¬† I’m not as concerned with the attendance issue as I was before.¬† This part of the meeting did put my mind at ease, however the fact that it is on hold, makes me worry that they could change the stipulations.¬†

A large concern for the parents who were there was the fact that they kept referring to the 20 hours of direct face to face intervention our children should be getting and how crucial those 20 hours/week are.¬† The presenters stated that research shows a minimum of 20 hours is needed in order to make a difference to the child.¬† With this being said, our children are only receiving 15 hours/week.¬† The director of the local agency spoke up to say that the 5 additional hours were for set up, tear down, and paper work.¬†Unfortunately, this is not considered “face-to-face” or ‘direct’ in any way.¬† Who is she kidding?¬† She then proceeded to say that¬†it is difficult to complete paperwork while the client is present, but that the agency would be changing the hours for the children, so that they will start 15 mins earlier and stay 15 minutes later and that the employees will start doing paperwork in front of the client.¬† Confused yet?¬† Me too!¬†

OT was discussed.¬† Apparently it was never originally in the budget from the government but was considered important enough to be part of the whole picture when the agency originally started the program.¬†¬†From my understanding at this point, it is the agency deciding that they¬†can no longer fund that program that our children so desperately need.¬† It’s very difficult to hear.¬† If they felt it was important in the being then how can it just be disposed of?¬†

Our time was cut short as the meeting had an end time due to custodial staff having to lock the building.  They asked for a show of hands as to who would be interested in meeting at a future date and there was a lot of hands.  We left the meeting without knowing when or where the next session will be.  

Leaving the meeting I heard sighs, I saw frustration, and evidently confusion, which I’m sure is what you’re feeling after reading this.¬† “Clear as mud” were my initial thoughts, and although there was a small glimpse of hope with the hold on the attendance issue, there are still too many unknowns and unanswered questions to let our guard down and feel comfortable yet.¬†

An update and additional cuts…

Sorry to leave you hanging without the ending results of the changes at the agency, but we as parents are still hanging on as well. The meeting that was supposed to happen, never did. The government apparently met with the agency to discuss the changes and walk through the details. The agency decided that they should wait until after the meeting with the government to inform the parents of the changes. Unfortunately, we have not yet been notified of exactly what is going on. We have been told the the changes will not go into effect until July 1st…but time is ticking and we are still waiting for more information.

I had received word from Ledger’s case manager earlier on in the week that OT services (Occupational Therapy) were going to be cut and no longer provided through the program. This is heartbreaking for me as Ledger really needs these services. I mentioned this cut to his pediatrician, who we saw on Monday, and she had never heard of this change and therefore it wasn’t really open for discussion.

Tonight, I opened my email and got the proof. Here is what I saw:
Dear Parents,

This letter is going in the mail to you this week, however as your mailing address since you were first referred to occupational therapy may have changed, I am emailing you as well to ensure you receive this important information about services for your child. As you may be aware, the Government of New Brunswick has recently made changes to the Autism Initiative funding to autism agencies across the province. As a result, Stepping Stones Fundy Region Inc. will no longer be financially able to hire TOTAL ABILITY‚ĄĘ to provide Occupational Therapy services to your child. Some limited occupational therapy is being offered during the month of June; however, as of July 1, 2014, there will be no occupational therapy services available for your child at Stepping Stones.

What are your options as a parent trying to access Occupational Therapy services for your child?
Consider hiring TOTAL ABILITY on a private basis.

Many extended health insurance programs include Occupational Therapy. Ask your insurance company for details.

Also, Occupational Therapy is considered a tax deductible medical expense by the Canada Revenue Agency.

For children who qualify for the disability tax credit, parents often use those tax credit funds to pay for occupational therapy.

Other examples of organizations that have paid for private Occupational Therapy at TOTAL ABILITY include Employee Assistance Programs, unions, and church groups. Ask your EAP, union or church group if this is an option available to you.

Finally, many parents pay out of pocket for occupational therapy. Some of our parents have chosen monthly occupational therapy for their child this year instead of weekly piano lessons, for example. Take the time to explore your options and you may find private occupational therapy is affordable for you. One thing is for sure- your child is worth it!

When should my child see an Occupational Therapist?
Your child should see an occupational therapist if he/she has difficulty with:
· self-care skills like sleep, toileting, hygiene, dressing and eating;
· fine motor skills and visual-perceptual skills for coloring, printing or cutting;
· sensory-processing challenges such as under-sensitivity or over-sensitivity to sounds, sights, smells, feeling of clothes, texture of food;
· self-regulation or emotional regulation;
· motor coordination, gross motor skills;
· attention, concentration and memory for learning.

For those of you who are lucky enough to have met my sweet boy, you know that he has difficulty with every single one of those listed tasks. We’re already running him to appointments for extra speech therapy, and now we will need to add this into the mix. I’m sad. I’m confused. And I’m frustrated all at the same time. I’m worried that these changes are taking so much away from the program that the children aren’t going to have much left to take from it themselves.

Petition

Petition

Just a quick update…

The meeting did not happen on Wednesday night.  The agency cancelled because the government was meeting with them that day to come up with an alternative agreement. 

We, the parents, still haven’t heard anything other than the letter that was originally sent to us.¬† We have no idea what is happening.¬† We are nervous, frustrated and concerned for our children and their futures.¬† Please click on the blue petition above and sign to amend the mandatory 95% attendance rate for children receiving ABA therapy!

Breathe…

Take a deep breath, because I’m about to start a rant…

So on Friday, I heard of a rumor.  A rumor that would affect our life for the next year or so.  I was told that the government would be making some changes in regards to services for the children in NB.  Spending the weekend at the trailer, and not spending much time on social networks, kept the rumor out of my mind and I enjoyed a beautiful weekend with the boys. 

However, heading into Ledger’s school this morning, I¬†could feel the vibe from the employees and the extra administration that was¬†present in the lobby.¬†The mood was somber.¬† And although the girls did put on a smile to greet each little person coming through the door as they always do, you could feel a sense of stress amongst them.¬† Due to a completely unrelated issue, I had an appointment scheduled for 9:00 (when I drop Ledger off) with his case manager¬†so I was interested to hear what she had to say.¬† She sadly confirmed that the ‘rumor’ was true.¬† The government had done an audit and would be making changes to the intervention services they provide.¬†¬†

The main and massive change that¬†they will be making is¬†an attendance policy.¬†¬†The child cannot miss more than 3 days in¬†a¬†3 month period, and if they¬†do, that child’s services will be discontinued.¬† This is completely unreasonable.¬†¬†Luckily, Ledger seems to have a relatively strong immune system. He¬†very¬†rarely gets¬†the flu and he doesn’t miss a lot of time.¬† So why I am worried then?¬† I took a look at the calendar when I got home from my meeting this morning and I see that he has an appointment next¬†Monday with a specialist.¬† That day will count as one of his sick days.¬† He also has a¬†dentist appointment in two weeks, which would also¬†count as another sick day.¬† So after those two appointments in June, he can only be sick for 1 day between then and the end of August.¬† If he misses another day his intervention will be cut.¬†¬†And luckily,¬†this is in the summer months.¬† Not only because¬†flu and cold season seem a little less invasive, but they’ve also said that the agency will not close even during snow storms.¬† So while the government chooses to close schools and give all of the rest of the children in the area the opportunity to stay home in a safe environment, they are leaving the agencies open and expecting the parents to get their child¬†there or once again, will be penalized with 1 of the 3 sick days within the 3 month period.¬†

On top of this, the ASWs have also had cuts.¬†¬†In the past they’ve¬†had 1 sick day per month and now even that is eliminated.¬† Now they are expected to be at work even if they are sick.¬† On top of that, there is no funding for training.¬† It’s really…frustrating, unreasonable, and very disappointing.¬† I guess maybe they¬†are looking to have epidemics¬†of pink eye, head lice,¬†chicken pox, etc… Flus, colds, and infections will be spreading like wild fires in there… It really is completely unreasonable and hard to wrap my head around that someone has actually made this ridiculous decision for the children who need¬†so much extra care.¬†

I received this letter in the mail today.  To me, it seems quite vague and I hope the other parents are aware of the issues underlining these three key changes. photo (1)

 

 

The agency is having a meeting to inform parents of the details of these changes on Wednesday night.¬† I’m hoping for a large turnout with good questions and great answers…

Small steps

Today , Ledger went back to intervention after being away since Thursday. I wasn’t sure how he was going to act but he did great! He seemed excited to be back and even greeted his ASW with a “hi!” followed by her name!
Speaking of names, I’ve been working with him on social cues. This past week our focus has been “what’s your name?” Typically he will echo what I’ve said and then I will prompt him with “my name’s…” Today he didn’t even need the prompt! I said “what’s your name?” And his reply? “My names…Ledger!” Maybe a relaxing night away at the trailer was the perfect remedy for a successful week for this boy. Fingers crossed he keeps it up for the week ūüíô

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He’s enjoying some relaxing time with his leap pad at the trailer ūüôā

Special Needs Safety

Today I would like to recognize my city for being helpful and providing some comforting tools for our wandering non verbal boy. Less than three weeks ago, I emailed the city about placing signs in our neighbourhood to caution drivers that there is a child with autism in the area. I promptly heard back within an hour that the work order had been placed. Today, less than three weeks later, our signs were installed! Just one more way we can alert others about our boy and try to keep him as safe as possible.
Last week I also enrolled him into an autism registry that our local police department has. It was a thorough survey that needed to be completed in order to help the police if Ledger was in trouble, upset, or god forbid, lost. I answered questions about his appearance, his favourite places, and specific actions that make calm him down.
Just having these two tasks completed, makes me feel a little more comfortable that I am doing my job to keep our boy safe. ūüíô

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