Our best vacation ever



As we sit here on our couch, watching another movie because we’re trapped inside during another snow storm, I can’t stop thinking about our best vacation ever!  Just over a week ago we spent 7 days in sunny Florida and I truly believe that’s where we are supposed to live! 

So what made it the best vacation ever?  It was full of relaxing family time. For some of you that might sound a little boring but we very rarely get to relax with Ledger. He is always keeping us busy as we need to change activities often due to meltdowns and lack of interest. We spend a lot of time trying different activities that he might like, or buying different toys that he might want to play with a time or two, but normally he shows very little interest. We spend most of our days travelling back and forth in the car going to and from intervention, eating, watching movies, and trying to do small amounts of seat work while working speech and OT exercises into all of the above.  Ledger spends his day pacing through the house with spuratic vocal outbursts. He has emotional mood swings that can change at the drop of a dime. He is constantly looking for food which we feel is usually out of boredom. He has eczema and scratches himself until he is sometimes bleeding which leads to a meltdown due to irritation. 

In Florida, we didn’t see those behaviours like we do here at home. Why you ask?  We asked ourselves too. He was so content. So at peace. Swimming is definitely his thing. He loves it – and he’s really good at it!  He (not kidding!) even smiles underwater!  It is his happy place being outside in the pool. After supper we would walk down to the playground every night where he would play happily on the slides and swings. And bed time? What a blessing…he went to sleep great, and stayed asleep all night!  Minimal vocal outbursts, he wasn’t looking for the snacks that he wants at home and he spent so much time smiling!  When we’d run out for an errand and drive back into the neighbourhood he would let out shrieks of joy in the backseat just knowing that we were heading back to the pool house again!  The combination of sun, fresh air, and exercise was such a great combination. Not just for him, but for all of us 🌴☀️. 

2015

I’ve been trying to write this blog for two weeks now. It’s not a fun one, and more than once I have given up and walked away from it. Today I read a post from Autism Daddy – a blog I follow and it made me get my butt in gear. Check him out when you get a chance: autism daddy His son seems a lot like Ledger, and he posts a lot that we can relate to. I’m always saying to my husband “listen to this!” because he seems so comparable to Ledger. I’m guilty of what he’s saying today though. So many stories on autism are always happy or heroic or successful individuals. But that’s not the only side to the disorder. I do try to lighten the situation because I try to be a positive person and see the best in each day and situation, even though sometimes that seems like an impossible task. Often after I read feedback from you, I feel like I’ve softened the story to make it seem like we are calm and very manageable. That’s not always the case.
Today I’m jumping in with two feet. Kindergarten orientation. Not so manageable. And the farthest thing from calm. We tried this last year and we were actually more successful then than we were this year. Ledger was very agitated as soon as we arrived. He didn’t want to sit down. He didn’t want to wait for the activities to begin. And he didn’t want to be in a new gymnasium full of new people. I tried to get him to sit beside me. This only resulted in screaming and throwing himself on the floor. I tried to get him to sit on my knee, which resulted in flapping out his frustrations – directly on my face. Yes we had visuals. Yes we had fidgets. No, he was not cooperating. Did I mention this was before they even asked him to do anything?
We quickly escaped the gymnasium, Ledger screaming, and me, shamefully wiping tears from my face. Jeff was trying to help him walk out his feelings. His ASW was trying to show him some visuals and I was trying to get it together. A kind teacher at the school showed us the sensory room and told us to take as much time as we needed. So sweet of her! Ledger did seem to decompress. However, he was not working up the courage to go back into the gym. Again with visuals, lots of prompting, screaming and even more tears from mama, we got little bits of time in the gym followed by longer periods of time in the sensory room. We did this for about 45 minutes and decided that was enough. I didn’t want to put him through anymore and to be honest I couldn’t get it together myself so I needed to get out too.
New things are hard for Ledger, and for us. If it’s hard on him, it’s hard on us. I hate seeing him get to the point that he needs to slap his hands against something to get out his frustrations. He didn’t hurt me physically but he crushed me emotionally and mentally because I couldn’t help him. I couldn’t explain to him what was happening and he couldn’t understand why he was there. The teachers were very kind and did not push him in any way. They gave us the space we needed and were very understanding when we left early. I’m sure their eyes were opened and so were some of the other parents and children in the room as well. It’s awesome that they have a sensory room that is already set up so that if he needs a break he can go. But it’s still hard as a parent to mentally wrap your head around the fact that he’ll be there in a small secluded room while his classmates will be learning new skills and building new friendships. I know, that’s probably making me sound pretty selfish to think that right?
It doesn’t matter that we’ve been living with this for 3.5 years already… it’s not getting easier. I’m a mom…and just like any other mom, when you see your child is uncomfortable, unhappy or just very frustrated with something, you are going to share those feelings. The difference is, you may be able to communicate with your child and calm them down with reassurance. We don’t have that luxury with our boy. I’m very scared for next year. More scared than I was with the initial diagnosis. Because I don’t know how he’ll react. And it’s the unknown that’s so scary. I pray and I know that the teachers will be professional and accept him just like they do with all children. I pray that he will become comfortable in that new environment and that he will be treated with respect from his teachers, workers, and classmates. I pray that they will meet the sweet side of him that we often (but not always) get to see at home. But most of all I pray that he will smile, which he didn’t do at his orientation.

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…

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™ 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 💙

20140520-212650-77210059.jpg
He’s enjoying some relaxing time with his leap pad at the trailer 🙂

A Walk in the Park

Today we went to the annual Autism walk for our local autism centre. This morning while we were getting breakfast for the boys, Jeff said “today we’re going for a walk in the park!” I chuckled because ironically, for us, a walk in the park can be the farthest thing from “a walk in the park”. It can be challenging, rewarding, and exhausting all at the same time.
Registration started at 10 and the walk started at 11. We timed it out so that we would have minimal waiting time before we could start walking. The four of us arrived about 5 minutes before the walk began, and even that was about 4 minutes too early!! I registered and gave Lori a small donation from us and from my parents. Then we waited as people began to gather near the starting line.
Ledger was anxious to get moving while Tucker took in all the people from his comfy stroller. Deb, the director of the autism centre, said a few words to get the crowd fired up and even chanted “give me an A…give me a U…” And finished with “let’s walk for our kids!” Our third walk, our third year, and I still choke up at that…I’m not sure I will ever feel enthusiastic about the fact that my child has autism. But it sure is nice to see that the people who have lived it and who have older children and young adults are positive about the disorder.
We have met a few people on our walks over the years. Some who we knew previously to our journey and some new faces. One man we met last year… He was observing Ledger from a distance and quietly approached us to ask how old he was and when he was diagnosed. He listened and then told us that he wasn’t diagnosed until he was much older. He didn’t have any therapies or support groups like Ledger has access to. We were grateful that he had approached us, impressed by his social ability, and encouraged by his confidence. Today, he approached Jeff and Ledger again to give them two small paper birds that he had made himself. Ledger tried to throw them in the water which he was so drawn to, and the young man suggested to Jeff that maybe he could find some stones to throw in the water. A simple suggestion that Jeff had already thought of, but seemed so heartfelt coming from the young man who, I assume, can see a glimpse into Ledger’s world.
Throughout the walk I find myself looking at the other people on the journey as well. Young, old, boys, girls, some verbal, some non-verbal, some with obvious sensory issues, some clinging to a parent, some observing others around them, and others struggling to walk past a small water fall which has caught their attention.
Our walk in the park today was not a walk in the park. But then again, neither is our life. With all of the differences around us, there was one common factor today. That was the love and support that you could see in the parents, family and friends of all of the people who they were walking for. Some days it feels like a very lonely world, and it is impossible for anyone who isn’t living with autism to fully understand that feeling. Seeing the people today, some enthusiastic, as I mentioned, and some looking very tired… everyone shared a common look of understanding. No one looked at us in shock or misunderstanding. I never felt the need to apologize or the need to explain the situation. My wish is that someday, that group of people who understand and accept the differences of autism will be as broad as the spectrum itself…

20140426-205656.jpg