As you have been following along with the page and blog most of you are aware that Rebecca and I have been busy getting the troops together. Pushing for better services for those on the spectrum in our community as a united front. Petitions are in place, people are signing, news/radio interviews have been had, brochures/flyers being made and we even had a booth set up at a local autism awareness event where Comedian Michael McCreary performed.
Rebecca and I met through our local Autism Intervention Center during a parent group evening. We had similar interests, our kids sounded identical, and we just hit it off. This new friendship quickly led to the blog, the page and our local facebook group. Through these means it has allowed us to help put a hold on the changes to early intervention services while our kids were in the program and now it is allowing us to push for better ongoing services, not only in our community, but, across the province.
All of it is exciting and new and that also makes it extremely terrifying. We have started these things as two, a partnership between friends, and I can not be more thankful for all her wonderful advise and how she has helped me along this journey. Rebecca is the face of our group and I thank her for taking this role because I simply can not be that person.
The Wednesday in which we had a booth set up forced me into a situation that I have not put myself in since going to University. It made a lot of my social anxieties come to the surface and I had a very hard time functioning. Unable to drown out the music that was being played, unable to separate the voices from those talking to me from the ones speaking in the background, having to remind myself to look at people while talking to them made me even more anxious then I already was. By the end of the night I was physically and emotionally drained. It was too much all going on at once and I have a feeling that I probably came off as distracted and uninterested to the few who I did speak with. That was not my intention.
I have said on numerous occasions that I completely understand my son and that is because I am exactly like him. When the Monkey was first diagnosed I could not understand why my parents didn’t see it. Why they didn’t see the delays or the meltdowns. They would keep saying you used to do that also or you never talked till you were 3.5 – 4 years old either. I have lived in a bubble for the past 8 years, deluding myself by simply avoiding all the things that cause my anxiety, avoiding those sensory triggers which used to make my life miserable, avoiding all the social situations which caused me to drop out of university. I push my son out of his comfort zone all the time because I know it will help him but I don’t take my own advise. By avoiding those situation which high school, university, and later work used to put me in I have unintentionally made it harder for me to cope when presented with these challenges.
I’ve hidden in my bubble for long enough and I think that now is the time for me to take my own emotional well being into consideration and help myself as well. I spend lots of energy helping the Monkey but I have never spent the time to look, analyse myself. On our journey into the spectrum this is the next step for me as I can not live in my bubble forever.
October is autism awareness month in Canada, and my awareness post is not about the numbers or the need for more services – both of which are very important – it’s what I wish someone made me aware of when we first got our diagnosis.
What they don’t tell you – the bad
- You will lose friends, not everyone will understand why you can’t just ‘attend’ parties and outings at the last minute
- You will get looks when you are out in public and your child stims, yells or has a meltdown. People who don’t know you will judge you as a bad parent because they don’t understand and don’t live in your house
- Not everyone will accept the diagnosis, this could be friends, family, strangers or even other health professionals involved in your child’s care
- You will need to be your child’s strongest advocate and voice, especially if they don’t have one
- You will need to learn ninja skills to fight for resources and become a detective uncovering what kinds of services might be available and how to get them and a super sleuth to figure out what the caused the latest meltdown du jour
- Some days you will cry and feel utterly defeated and alone
What they don’t tell you – the good
- You will gain new friends, a community of people who understand and are able to offer advice, support and carefully scheduled play dates that avoid sensory overloads
- You will become an educator and advocate without even knowing it
- You will take joy in what other parents sometimes take for granted – the milestones of being able to go out in public with your child – fully clothed!
- You will learn ninja parenting skills that make you feel like a super hero when you get your child to try something new
- You will become a super sleuth and learn how your child’s brain works which very likely be extremely different than your own, it will teach you a whole new perspective
- You will cry some days out of sheer happiness because your child did something you never thought possible, or that a year ago would never have been possible
- You will learn that your child can amaze you in ways you never imagined
Autism – regardless of where your child falls on the vast spectrum will change your life dramatically. Some of it will be bad, some of it may be for the better, although often it will be hard to think like that, especially if you have a child who is non verbal and/or self-injurious. You as a parent need to accept not just the diagnosis, but that everything you thought you knew about parenting pretty much goes out the window and you’ve entered a whole new ball game filled with acronyms, therapy and a whole different set of goals.
I heard this song performed live last night a local autism awareness event with Comedian Michael McCreary – Does this Make my Aspergers’ Look Big and I thought it was fitting to share during autism awareness month.
The song was performed by Cathy Hutch and is called I’m in Here. It brought tears to me eyes so I wanted to share it.
Most educators are passionate about their jobs, they celebrate in our children’s successes and feel as defeated as we may in their perceived failures. As parents we are often given reminders and pats on the back even when things may not be going well to help us know no matter what, we’re doing a good job. It’s important we remember to pass on those same accolades to those in the school system who spend so many hours of their day with our kids.
Communication with your school is key. If you are not having regular meetings that involve the teacher, resource teacher, perhaps principal and other district resources or others involved in your child’s care you need to set these up. It’s incredibly important that as a group you are meeting to have open lines of communication and discuss milestones and challenges. You need to both celebrate the wins and problem solve together. These meetings should include setting attainable goals, determining how success will be measured and reviewing them.
While preparing for our recent school meeting, I sent a laundry list of items I wanted to address. In my brain, I perceived this list to be positive, showing we had moved past the “how do we transition MJ into school?” and past the “I don’t wanna go” phase into the “how do we now help her cope with other issues we couldn’t really address before?” I didn’t note this in my email ahead of the meeting, and highlights the problem with email communication sometimes: it can be left open to interpretation. Because I had a list of things to address which included discussing challenging behaviours and meltdowns that have been occurring at home (more frequent than pre-school), they took this to mean I felt they were doing something wrong. This was not the case, nor my intentions. I can’t stress the importance of face-to-face meetings enough.
It is well documented that kids, especially those with Aspergers, have an incredible ability to hold things in, appearing to do really well at school, only to explode when they get home. It can often be a source of disagreement between parents and schools because the teachers just don’t see it. This is called the ‘Delayed effect’ and it was nicely summed up on the Autism Discussion Group Facebook page and also answered by an OT in this article from Spectrums Magazine.
For us, this delayed effect is a way of life, and has always been MJ’s MO, but it’s not good for her. It’s not good for any child (or adult) to build up those stress chemicals in their brain. This is a very tricky issue to raise with schools, it can make the teachers feel as though they are doing something wrong, some may even go so far to suggest the problems lie at home because it doesn’t happen during the day. Perhaps you as the parent are pushing them too much to tell you about their day. All of these statements are false.
In our case, we don’t feel the school is doing anything wrong, in fact, it’s just the opposite. We are incredibly happy with MJ’s progress, but like anything, there’s always room for improvement.
At home and at daycare there is a definite decompression time after school where MJ gets to either have a bit of screen time, alone time or general stim time which could include physical activity like spinning or swinging, etc. We never ask her about her day until near the end of dinner or just after and in fact, most of what we eventually hear comes from her when she is ready to tell us, it’s often days later that we hear about things she found difficult. We have had countless hours of parent training and have read so many books, done so much research that we know about the functions of behaviour and to not pay lots of attention to some of the items she raises or to drill her for details about her day. It’s often in meltdown mode that she will tell us her day was just too much and what bothered her. In meltdown mode, there’s no real comforting that can be done, the meltdown happens and then it’s over. Then we move on and we don’t give it a lot of attention, but generally we have gleaned some key piece of information about what bothered her.
Through modelling we can later address these issues and show her examples of how she could have addressed things, or explain that she should talk to her teacher and the shared classroom EA about these things when they come up. We never address these directly after a meltdown to avoid giving attention to the in the moment behaviour.
So we are doing the right things, and the school is doing the right things during the day, but these meltdowns are still occurring more frequently than pre-school. So I wanted to problem solve this during our meeting and figure out as a group what could we improve on, how could we help her to be more honest about her feelings during the day to lessen the meltdowns that occur in her safe spaces of home or her (home-based) daycare where she’s been for close to five years. I also wanted to address some of her behaviour protocols, start setting goals and targets to decrease some of her behaviours and being more proactive about noting her anxiety levels so we could continue to create and meet new milestones and stretch goals.
I did not however, tell them how happy we were with the way things had been to date. This was a huge error on my part. My laundry list of items looked like complaints, criticism of a job not well done. It made me stop and think about how much they care about my child and her well being and want to see her succeed as much as I do. So I urge you as parents to take a moment and ensure you tell the educators in your child’s life when they are doing something good, just like we do for our children and just like we want to hear from time to time.
Other tips for successful and open communication besides regular meetings include creating and keeping a daily communication log. This log should be used not just to record what happened, but to note good and not so good things about the day. It can be a way to help prep for any unexpected schedule changes that may occur in the days to come, and be a way for you to continue to praise accomplishments that happened in school at home. A way to talk about the day without asking your child what happened. For example, “I hear you shared your pencil today when Johnny’s broke. Mr. X was so proud of you and so are we, way to go. I know it must have been so hard for you to share your favourite pencil, but I bet you made Johnny feel really happy.”
This can go both ways, if you are sending back positive notes about something that occurred at home, these can become teachable moments in school and another way for your teacher or EA to connect with your child. For example, “I hear you ate peas last night! Great job. Did you know peas are my favourite food? I like them because they are green, they feel interesting on my tongue when I eat them. What did you think of them, were they soft or hard? What else feels like that… etc.”
The moral of this post is as follows: Communication is vital, and it needs to include not only issues you need to find solutions for, but accolades for the milestones both big and small that are being achieved as a result of hard work and dedication from the educators in your child’s life.
*Photo credit to the Autism Support Discussion Page
This story was shared with us by Valerie, one of the members in our Facebook Group – Autism Parents Group NB. Valerie is raising a teenage son with autism and is quickly becoming my go to for advice on our school system because she’s been navigating the waters for her son a lot longer than I have for MJ. She often has a fresh perspective on things and I have a lot of respect for her, plus she raises goats, has a pet turtle and horses, so she’s pretty much the coolest person ever in MJ’s eyes.
Many years ago when her son was in elementary school the autism resource mentor used this anecdote, to explain meltdowns that occur “for no reason at all”, and it really hits home. So please take a moment to read.
The story goes: A lecturer was standing in front of a group of teachers, Mentors and other educators. In his hand he held a tray, the type typically seen in cafeterias, by his side was a pile of objects of various sizes. He explained that the tray represents the day and the objects represent different incidences which occur throughout the day.
- Except last night the child didn’t sleep well, so the first object is placed on the tray;
- Everyone overslept a bit, on goes another object;
- They were out of his favourite breakfast food, on goes object 3′
- His favourite shirt is in the wash (object 4);
- His other shirt itches (another object goes on the tray);
- He gets to school only to be greeted by a substitute teacher (another object );
- One of the overhead lights is flickering and humming in the classroom (another);
- The weather isn’t nice so they can’t play outside (another);
And the day continues. By now the lecturer’s tray is quite full yet he continues. Finally the lead breaks in the child’s pencil (a final small object is placed on the tray causing it to tip and crash to the floor startling the educators), the child has a meltdown “because his pencil broke”, ( aka for no reason at all).
Each of our days consists of many small stressers, none of which, on their own creates much of an issue yet, the cumulative effect can be very significant, (our trays become full) especially in someone very sensitive.
Both Valerie’s son and MJ have had some meltdowns over the last week. In Valerie’s case, a lot of things over the week took their course, scout registration, a late bus, a substitute teacher etc..
This can explain why, especially in my house, we sometimes get the end of day meltdowns. Any one item on it’s own that is happening in school may not seem like it should cause a meltdown, but this tray analogy shows us how things can build up and explode. For MJ, she is still getting used to all the changes and differences in school. Transitioning between school and daycare, the weather and light changes etc. So at night when she comes home, her tray is so full that something so seemingly insignificant as mommy absent-mindedly using the wrong word while preparing dinner, or mommy having to work a little later and daddy starting dinner preparations can send her into a tailspin.
The next time your child has a meltdown for almost ‘no reason’, take out a pencil and list out all the little differences or changes that have taken place in last few days. If you find yourself making quite a list, then this could very well just be the meltdown that releases days of built up tensions.
Hoping for a meltdown-free day,
Now that the dust has settled after the election. The Liberals are the party in power and are not either of the two parties who identified autism services as a priority in their platform. We’ve decided it’s time to roll up our sleeves and ask the government to make autism front and centre.
We have created a petition to be presented to the Premier Elect and others once the transfer of power is completed and a cabinet is chosen. The petition asks for three things:
- Creation of of a working group to address help address gaps and inconsistencies in services;
- A facility with trained and qualified staff for adults with autism who cannot care for themselves and;
- Access to mental health services for those individuals on the spectrum who also present with high anxiety or depression.
Please sign and please share!
This is my first provincial election since MJ’s Asperger/Autism diagnosis. I generally always read every party’s platform, watch the debate and then make my decision based on whose platform I like best. This time round there’s been one thing on my mind, I want to know who has the best platform when it comes to Autism policies in this province.
There’s no doubt in my mind that the preschool services we received here in Fredericton were fantastic, but as we’ve noted in other posts related to the proposed changes (that are now on hold indefinitely), not all regions receive the same equal level of service with government funded tax dollars. While my daughter is high functioning, and would not need a care facility when she is an adult, there are no such services here for families of children with severe autism and that’s a massive gap that needs to be closed.
Two parties note this in their platform and commit to building a facility for adults with severe autism, but do not have any other reference to autism in their plans. The other three parties make no mention of autism what so ever in their platforms. With this in mind, I posed a series of questions to all parties, yet at the time of writing this blog post (5 days later), only heard back from two. The two who made commitments to begin with. I will update the post if I get any other responses, but as of now, it’s clear that if autism is as important to you as it is to me, your vote should be with either The New NDP or the Green Party.
While we as a blog are not endorsing any particular candidates, I can tell you that I’ve had numerous conversations with NDP Candidates, some of whom are raising children on the spectrum – that’s right, at least three – if not four, of the candidates with the NDP are personally affected by autism. In fact, one candidate advised me that Dominic Cardy has even personally attended medical appointments with his family so he can understand the challenges they face. That speaks volumes in my books. I also applaud the Green Party’s commitment to creating an Autism Working Group comprised of various stakeholders from the community, including parents.
Below are the questions and answers from each of the two parties. The first question was only asked of the Green and NDP, the next seven were asked of all parties.
1. What is your commitment level to the current 20 hours of ABA therapy children received, funded by the government? Would this continue and what changes would you suggest?
2. There are currently 6 centres in the province delivering these pre-school services, but they all have different operating models and offer different levels of service. There is no consistency amongst what is provided/offered to families. How would your government change this?
3. Some children require occupational therapy in conjunction with ABA, but the wait times are long and parents are now forced to pay out of pocket in order to get vital services at a young age. What would your government do to change this?
We have no specific plans to change the current ABA model for preschool children, however what has worked in many cases in New Brunswick and other jurisdictions, is to have more occupational therapy including in a child’s ABA intervention. This is something a parent can talk about with their clinical supervisor.
4. There is a shortage of EAs in the classroom for kids entering the school system, how would you address this?
5. Once kids age out of the pre-school therapy, there is little support in the school system to continue with ABA therapy, and waits for services like occupational or speech therapy are often very long forcing parents to pay out of pocket. How would you address this?
Again, the Creative Schools Act will give all children the support they need to succeed; this would include the provision of therapy for children that require it.
6. The supports (EAs and services) in the school system appear to be almost non existent for the students with high functioning autism, parents – ourselves included – find that we are at the bottom of wait lists or have to fight to receive any support (including EA). How would your government address this?
No parent should have to “fight” for services their children require. Any child, who requires extra support to be successful, should receive it. This will be covered under the Creative Schools Act
7. Very few actual parents are consulted or brought in to help advise on autism services. Would you support and commit to establishing a stakeholder committee made of up parents representing all levels and ages of children in our community with autism?
Spectrum Warriors would like to thank the parties who responded, and remind all our New Brunswick readers to vote on Monday, September 22