Tag: ASD

The Summer of New Adventures

Posted on by laughloveandlife

I honestly don’t know if summer could get any better. We have had the amazing good fortune of having beautiful weather, incredible friends to hang out with, a cottage to escape to and now a very cool motor boat to start our next chapter in adventures at the lake.

It didn’t start out that way. There was a significant number of times at the start of this year where when we went for a ride , it took an incredible amount of time convincing T to even get in the boat. Then it took a lot to convince him to go faster than a put put pace. My husband and I started looking at each other with a “wow, seriously? Could this be the biggest waste of money we have invested in…ever”. We weren’t sure what to do to get him comfortable with the boat (after all, this is a little man who has an auditory sensitivity to loud noises and we’re asking him to sit in a motor boat for goodness sake!)

All I can say, is that my dear husband gets the most brilliant solution award for this one. I don’t think I give him near enough props for how patient and creative he gets in working with T on challenges/resistance he faces but I am truly impressed with how he handled this one. He made sure T felt like he was in complete control. He talked through what the experience of being on a boat would feel like and then ultimately T would give a thumbs up or thumbs down depending if he felt things were getting a bit fast or not.

It took awhile as T got comfortable and once he was there, we started working on him to think about the 3 person tube we have to go on the back. Same situation, talk it through, start slow, he controls his comfort zone…That started in June and now he loves it when dad goes fast. This is so reflective on what its like every day with #Autism. If you prepare them, talk through what to expect and help them plan for the day. If you don’t give them that framework to understand, more times that not, it’s a disaster.

Just keep talking….

Next up, waterskiing…:)

Simple details can help make the world of difference in prepping a child with ASD

A much needed TIME OUT to keep in the game

Posted on by laughloveandlife

Let’s be honest. June knocked the wind out of my sails.

My resolve got knocked down, my heart ached, my dukes down in the fight. This is how it started…

Part 1: An autism conference where I realized how still very far away they are from really understanding Autism, how to treat it, and really concrete ideas on managing through it. But I also felt like my heart had been given hope and crushed at the same time as we learned more about  just how much of a fight this will be in T’s growing up..Abundantly clear thanks to an endearing dialogue between The Thomas’ a mother, Sandy and her 22-year-old son, Dylan as they candidly talked about their perspectives on what it was like growing up with Autism. Bottom line..”it will break your heart, it won’t be easy, but you’ll get through…”

Part 2: A series of “showcased” events (School dance, year-end shows, school field trip) in which it became fairly obvious that people I assumed “got it” were not exactly sure how to treat or address Autism as a normal part of daily life. One instance was the school trip in which I got the impression they thought T would  “dart” …we were on a farm..I volunteered that day but instead of including the two ASD kids in with the regular group and asking us to be active observers, we were kept separate along with the other Autistic boy in class and his mother, keeping the most important challenge of Autism, socialization the missing link on that adventure. Another moment was when he was set to the side at the dance,  that “joining in” to the rest of his class would get him too excited.  The last at a year-end recital for dance (we do Tap with him cause he loves the impact), I couldn’t help but cry because he was actually doing the routine (slower-about a 5 second delay) but he was doing it, and enjoying it and we were so friggin proud! and then…he just checked out…went off to his own planet halfway into the second routine and I started crying for a different reason…I was crying because I just wanted him to come back.. to be part of the moment…to be proud of what he accomplished…to be there.

Part 3: Where we are told that the Toronto District School Board does not have enough funding to provide an SNA (Special Needs Assistant) for T (and many others) next year and that we now need to fight our way up the ladder, become the squeaky wheel, do whatever is necessary to try to facilitate support for our son in the school system.

Part 4: Friends started asking how it was going, how T was doing, how our family was doing. I struggle often talking about Autism (except ironically online) because I don’t want it to consume our life. I don’t want it to be the only thing people think of when they look at T and yet, I want it to be a comfortable piece of conversation that is shared between our friends and family. I started to say something but couldn’t get the words out without that evil lump in my throat showing up. I’m not exactly sure why I started sobbing except that my energy felt it had hit an exhaustion point and my  heart-felt that it was physically aching. I said I was worried. That I felt like I wasn’t sure we were doing enough, that I hated thinking about how hard he might have in trying to connect with people growing up, worry about him, our daughter and making sure she is fairly and evenly cared for..my husband that he’s doing ok (as much as we talk, he still has taken on the role of guardian, papa bear to us all). We have amazing friends..but I didn’t realize how amazing until we started talking and they just let me talk…and gently asked questions and reassured me that we were doing everything we could to help T and support his success.

Strength in your relationship will give you the energy you need

And this is how the month ended…My parents came to town and let us get up to the cottage on our own. I sincerely think this saved my bacon. After reading an article in the early days of ASD that quoted parents of special needs were 80% more likely to divorce, I have been a big believer that it is essential to keep your relationship strong in helping manage through Autism. This trip time gave us the chance to regroup, to reconnect, to talk, to laugh and to remember why it was we got married in the first place.

We came home stronger, moving on and ready for July..refreshed and optimistic. We will all have those roller coaster times but this part of the ride I want to stay on for a long time.

The journey through Autism isn’t always easy

Posted on by laughloveandlife

Last week I attended an Autism conference by KidsAbility in Waterloo and had the privilege of listening to a very honest, heartwarming and heartbreaking dialogue between Dylan Thomas (a 22 year old U of W student with Aspergers) and his mother, each describing their point of view of what it was like growing up with Autism. The closeness of their relationship as mother and son as well as their unique perspectives gave me moments of laughing my ass off with Dylan’s straight shooter depiction of thinking of people as animals to that large lump that gets in your throat as his mom described the constant challenges they faced in navigating the school system on Dylan’s behalf.

That presentation as amazing as it was, somehow turned me into a sobbing mess on the way home, an ache in my heart that felt so heavy as I thought about the road ahead and what we might have to face as T grows up.

That was Friday and it somehow opened the floodgates for the weekend as my most amazing husband sent me off to the cottage with the girls to regroup, relax and reconnect with lovely ladies I hadn’t had a chance to catch up with for quite a while. These are beautiful friends, women that I know very well, enjoy their senses of humour, and can easily talk about anything. Yet I found myself, worn out from a fairly exhausting month of work, unable to prevent the crack in my voice and the floodgates to open when we were having a simple conversation about Autism. I’m not sure if it’s that I don’t want to talk about it in case in starts to ostracize people or if I don’t like talking about it because I don’t want it to define who T is and who we are. I surprised myself by admitting that anyone who gives me that sympathetic, “I’m sorry” head tilt, I want to slap and I find myself putting the word “Autism” out there as almost a dare for anyone to react in a way that is anything different from normal.

T is doing really well right now. He is engaging in social conversation, he is doing way better at looking people in the eyes, his frustration freak outs are almost non-existent. He is doing well because we are working hard at managing a household that works for Autism. We go to Speech Path weekly, we practice at home, we work with his teachers, we know what sets him off and create plans that don’t contribute to those ugly moments.

No one ever said the road would be straight…

But he still has Autism.

He still has repetitive behaviours, over-stimulation issues, sound and texture sensitivities, communication and social challenges.

We always try to take a very positive approach to this journey but I have to admit, after a month of school field trips, volunteering in the classroom, school dance, and most recently an end of year performance where the kids go to dance, we are emotionally exhausted. Every time we go to one of these events, my heart is FULL of love for our little guy..we feel so incredibly proud of what he has achieved. But there is a part of me that is really sad…sad when he checks out into his own world in the middle of a performance, sad that kids aren’t connecting to him in school activities, sad that he is left out…sad because we can’t make a difference in those moments.

I know this just a moment in his life but its one I wish we could speed through and get to the other side.

After hearing the Thomas’ story, it seems like the road is a long one.

Autism Diagnosis – 1 year later…It gets better

Posted on by laughloveandlife

We’ve officially just passed our first year with an ASD diagnosis.

It’s sometimes hard to believe that it was only a year ago that we first got sucker-punched with the announcement that our 4 yr old son (at the time) was on the spectrum. This year became a test of everything. A test of our patience, a test on our marriage, a test on our ability to learn, to cope, to support, to stay positive, and ultimately to keep laughing.

For those of you new to a diagnosis, here is a snapshot of what might happen within the first year of discovering your child has Autism. (NB: I’m being brutally honest here in hopes to pass on a realistic viewpoint and let you know that you are not alone)

First 2-3 months: Feels like you’re in a foggy haze. I have seen people react many different ways to a diagnosis. Self-pity, frustration, anger, heartbreak. As much as I tried to be positive, there were still moments I felt like I wanted to scream. I couldn’t comprehend why us, didn’t think he was really that far off from regular kids to be defined as Autistic, embarrassed by how often when someone asked me about it I couldn’t hold it together. There will be many tears, often from frustration as you fumble through trying to figure out what you are supposed to do (especially when it comes to finding support and school). You might feel useless, overwhelmed, sad, disappointed and still completely (if not more so) madly in love with your child.

A dear friend gave us a copy of The first 100 Days by Autism Speaks. It helped. Although my husband and I are both Do’ers- I’m an event planner and he’s a project manager and we didn’t get the sit back and process mode, instead stupidly tried to project manage the Autism right out of our little guy.

100 Days of Autism Diagnosis

Source: etsy.com via Jennifer on Pinterest

 

The next 4-8 months: Once we finally got to the realization that indeed our son was Autistic, that this was going to be a lifelong venture and we needed to start adjusting the how to’s in managing his success, we (or should I say I more so than my husband) had a really difficult time informing people of T’s ASD diagnosis. It felt often that people were a bit stunned and didn’t know what to say..choosing to say something like “well, he doesn’t seem Autistic to me” (hated that)..or gave us that dreaded pity look (hated that more). Then there are those friends who say something brilliant and just help you get through. Best examples of peeps we love and their originality that helped so much..

J- Simply said “Oh..so he’ll be an engineer” That matter of fact..like ASD would help guide his career path to a place where other socially awkward folks might hang out..that there was a pre-existing destination that would be completely accepting of the way he functions

G- Who sent a lovely email with “I don’t know what to say” (love her honesty) and that she was there..on call…standing by if we needed her.

T- Who let me just bawl and agreed it sucked and let me rant to her more than once and asked me how I felt…that rarely happened and I would rarely talk to anyone how I was feeling but T and I are that kind of veritable friend soul mate..who can call you out, ask you tough questions and you love them for it

W-Who is one of the most generous hearts I know and also has had a ton of experience in Autism given that she has family who are as well. She was the greatest listener and advice giver ever. Having a ton of wonderful matter of fact conversations that helped me better understand what Autism is all about.

School

In this time period, we also felt the massive and crushing experience of “working” with the school system to get T some help. It blows my mind how often we heard “the squeaky wheel gets the oil”…and they’re right. Chris and I are both very much sit in the camp of you get more bees with honey but this is one example I can truly say, YOU GOTTA FIGHT! FOR YOUR RIGHT…to have your children supported in school. Many parents who went before me with the an ASD diagnosis, kept telling me to advocate for my son. I truly didn’t know what that meant until dealing with his education. It felt like a battle from the word go.. and we have to say we are incredibly fortunate to have a principal we feel supports us and lucked out with an EA who T and another boy share. The key issue..budget. There is 4X as many Autism diagnosis than in 2002 in our province and yet they have not changed the budget significantly to manage how many kids are needing help.This is something I plan to go on a crusade about once we get our lives in order.

Help

Another key change we did was coordinate help. We went to the Triple P parenting class offered by the Geneva Centre for Autism, which I highly recommend for a number of reasons. 1) You get to talk to other parents who are having similar struggles at home 2) The videos might be a bit hokey but they give you great foundations to work with not only your special needs children but parenting in general 3) You start developing a series of strategies for managing through the day to day to keep your spirits high and your energy focused on the positive. We also worked with an Occupational Therapist to look at ways to help him manage (we discovered he is a deep sensory kid and that a really big squeeze hug will help often when he gets overwhelmed). It also explained a lot why he doesn’t like certain textures..(right now jeans are on the outs) as the OT explained for him, its more like sandpaper than comfort..and why he gets really excitable in loud scenarios (his hearing is super sensitive as well) One of our worst moments was in the midst of a fire alarm. A situation I will never forget. The most valuable we are finding is working with a Speech Pathologist. She has made incredible strides with T in making eye contact when he is talking, taking time to think through what he is saying and learning how to be quiet and not talk..something I didn’t realize how important until we started using this as a technique at home. When he is really excited, we put our finger to our lips (for quiet), gesture for him to focus on what we are pointing at and wait quietly while he accomplishes the task. I tell you, getting dressed went from hellish to happy simply by using that strategy.

8-12 months: I think it wasn’t until then that I was actually able to get out the words Special Needs without cringing at the response I was about to get from people. We still get the pity look but I now realize that its simply because they don’t understand. Who I did feel totally got it was all the teachers in my life. One, an old friend from high school, Jamie M simply asked was kind of savant quality had and talked about the 5 kids he has in his class (this makes total sense as he is an absolute ham and would completely “GET” an Autistic sense of humour). The other, my cousin, shared a beautiful poem with us about truly understanding Autism in the form of the Night Before Christmas. It made me cry but also  made me realize how she and many others are part of that quiet strength we have in our corner. Friends and family are what you need to help you get through sometimes. Talking is good.

Marriage

Speaking of talking, the one thing I can’t stress enough is to keep the dialogue open with your spouse. As I was initially researching Autism, I came across a stat that 80% of marriages with special needs end in divorce. It freaked the crap out of me. So a key thing we concentrated on was keeping our relationship strong to be able to stay strong as a family. We set up and maintained date nights, met at the kitchen table for wine, tears and conversation, banded together to fight the school system. We are (what I would say) one of the strongest “teams” around and even then we faltered on occasion- getting frustrated at each other because of being frustrated with the system or bottling up the heartache we had that life wasn’t going to be ordinary in certain ways. That T might or might not do well in team sports, social situations, school..but talking about it and sharing our struggles made sure that neither of us felt alone in this journey. Check out Our Son Destined for a Team for our perspective on sports.

One Year Later

Life is moving forward and we are seeing some great progress in T’s development.I was starting to feel like he was really behind in the way he interacted with kids but he is starting to integrate a ton better and we are working on social situations. In speaking with his support team at daycare/school, turns out he has lots of friends and in that beautiful way that kids are, when he starts getting upset, they somehow have figured out strategies to keep him relaxed throughout the day. (They gave us a great example of T starting to get agitated and one little girl coming over and handing him a train to hold onto…seriously, I turned into a mushy mess in the middle of the meeting).

To anyone out there who might have recently received an ASD diagnosis, it will get better. You will learn to adjust to the changes in your life and the grieving period will start to subside. You might be surprised by how much of a protector, fighter, lover, or comedian you will become. It will likely change you somehow. If it does, be sure to figure out what you need to get through. For me, its been exercise and laughter and an invaluable support system behind us.

Make yourself strong. Mentally, Physically, Spiritually…so that you can help your kids have the best adventure of their life.

Source: etsy.com via Christine on Pinterest

Hello Autism…

Posted on by laughloveandlife

My son, T at 4 years old, was diagnosed with ASD (Autism Spectrum Disorder) 2 months ago.

By the time the developmental assessment came up, it had been so long ago that we had seen problems, we almost didn’t take the opportunity when it came up. (It had been over a year since we were referred). The issues that had initially created the need for the assessment had seemed to subside (with a change in day care locations) and T wasn’t behaving the same way he had when he was there.

BUT there still were occasional questions of the way he behaved at times so we thought it was worthwhile to get a final answer once and for all and help us stop wondering the What If’s??

So we went. Well, T and I went for 2 full days. Two days of watching him get utterly exhausted as he met with everyone from a Psychologist, to a Speech Pathologist to a Play Therapist to an Occupational Therapist to a Neurologist..the list seemed endless.  I was able to sit in on a couple of the interviews but to be honest, I’m not sure if that helped or hindered. He kept looking at me with curious eyes wondering why I was making him do all of this. More than once, he asked if we could go home.

Internally, I wanted to leap from my chair, grab him and run for the exit, the momma bear in me uber-protective and desperate to give him a break. There were a number of times I knew he could have gotten an answer if only they asked it differently, but therein lies the rub…this was standard testing and in that world, T didn’t do so well.

At the end of the two days, my husband and I met with the team of experts who had gone through the tests with T. They each recounted their experiences, indicating he was a polite kid with a happy disposition and in certain areas, quite smart..case in point when they were doing social examples with dolls playing and asked T to tell them what the dolls were doing next, he just said “the dolls are sleeping, they want to go to sleep”. A true indicator to them he was DONE with the tests.

Even with all the summations, it still came as a complete shock when they told us he was diagnosed on the Spectrum. Autism hadn’t even entered our brains. ADHD? Sure..he had definitely shown signs of lacking focus and avoiding eye contact but we thought they might even say that we were over-reacting and he was perfectly normal.

We left the hospital in tears. In shock and not having a clue what to do next. I scoured the internet when I got home but to be honest, it was way too overwhelming and so much of it didn’t feel like it pertained to us. It wasn’t until a dear old friend reached out who has a son with Aspergers, and gave us a run down of what to expect at the beginning of dealing with this.

I must admit, the first month sucked. We both went through versions of the stages of grief- anger, pity pot, guilt, sadness, bargaining and are close…(almost there) to acceptance.

We are now in the throes of learning as much as we can about Autism…finding resources, reading books, meeting with the school, meeting with the daycare, adjusting slowly to what this means for our family. We are cognizant that this might have an impact on our marriage, we are aware that we need to be careful on how we manage both kids. Not excusing everything T does because of his autism and ensuring L (our 3 year old daughter) doesn’t lose out because all the focus is on him. As my husband said recently, everything has changed and nothing has changed…he’s still our loveable, sweet little guy who has a rather endearing obsession with Thomas the Tank Engine and has a ridiculous ability to memorize words…but life as we once knew it feels like its changed forever.