Spectrum Warriors: Life Through The Autism Spectrum

The Road Just Keeps Getting Bumpier

In life there are always ups and downs. Sometimes simply being positive and choosing to look at the brighter side allows us to change our downs into ups but some of the time that just is not possible.

The Monkey is most definitely in an upswing and I think a lot of that has to do with medication and with him becoming more comfortable in his own skin. In May he started taking a small dose of Prozac along with the Respiridone to help with anxiety and although I don’t see a huge difference in his anxiety I am noticing a few positives. I think we’ll know for sure if the medication is working once school starts.

Some of the positives we have been noticing in him have come with maturity. Even if he is upset we are more easily able to talk with him about it. He doesn’t always understand what we are trying to say but instead of running away, crying and hiding he is actually pretty calm. This new calmness will come in handy once school starts.

The Monkey is also staying upset for shorter lengths of time. Where as once he would be crying and screaming for an hour now he only gets upset for 15 or 20 minutes and will usually come and hug me or say sorry once he is done. Then he even lets us talk about what happened.

These are all things that would never have happened 6 months ago. The more you would talk about something the worse it would get for him. We learnt quickly that talking when he was upset was pointless as it just made the meltdown worse. Now, however, it is so much easier to talk to him. I look forward to seeing if this behaviour will continue once school starts. I am fully prepared for a little bit of regression when we go right back into the school routine again but I am hopeful that it will be a calmer and smoother transition.

Where the Monkey is in an upswing I am in a complete downswing. After suffering with some very debilitating joint pain  and a bunch of other weird symptoms for the past 7 years last week I was diagnosed with Lupus. The diagnosis came as a relief in away as I had been having major disease flares off and on for yeas. I am not much of a complainer when it comes to my own health so the majority of those I know knew there was something going on but not to the extent.

Lupus is debilitating, scary, and incurable. As I begin down a road to try and limit disease progression I will probably not be writing here to often. Right now my main focus is to start taking the immunosuppressant drugs, anti-inflammatories, get into an exercise routine, and clean my diet up even more.  I need to de-stress and take a step back for a little to do that.  Writing here isn’t stressful but my mind isn’t in autism right now and my Monkey has been doing amazingly lately. I can be nothing but proud of him for all his progress.

Rebecca has also had a few bumps in her own road lately but she will be back soon with lots of great posts. We hope your summer is going well and that all your kiddos have been enjoying their summer vacations.

Take care

Sabrina

My apology to the mother in Walmart and things I wished my 20-something-year-old, ignorant self had known about autism

AutismDay2There is a woman who has a profound effect on my life and I doubt she’ll ever know it. In fact, I owe this woman an apology.

Back when my husband (then boyfriend or maybe fiance) and I were living in Toronto and childless (10 years ago or so) we used to shop at our local Walmart in the Stockyards. We would often be there shopping at the same time as a woman with her young children. This is my apology to her.

Dear Woman in Walmart,

I want to apologize to you for not understanding. I want to apologize for criticizing your parenting, for making comments about your child that I had no business making at the time.

When we would see you and your children at the store, your daughter, who was not more than 7 or 8, would wander away from you, making high pitched noises. I would watch as she would yell and scream and at times and it seemed you had no control of her. She would pull things off the shelf, or stand in the middle of the aisle screaming if you took something away from her.  I would roll my eyes and my husband and I would make remarks about how badly behaved she was. How we would not be that kind of parent, oblivious to our child’s rude behaviour that was disrupting the shopping experience of others. We would talk about your lack of parenting skills and tsk tsk you.

I am ashamed and appalled to admit to this behaviour. You see, I now understand your daughter was autistic. I understand that what she was doing was simply stimming and communicating in the only way she knew how, in a place that overloaded her senses and caused her great pain.

I can empathize now, because I now have a daughter with autism. She is high functioning and doesn’t often melt down or cause a scene in public, but it has happened and I have been at the receiving end of the comments and the looks. When they happen, I am angered by the fact that people are  so ignorant, are so unaware and uneducated. Then I humbly remind myself that I WAS one of those people years ago.

I knew of autism, but I didn’t KNOW autism. Now I do, and now I wish I could take back every comment, every look and every bad thought I had about your parenting skills. When we were going through the diagnosis process for my daughter and we started reading up on autism, I looked at my husband one night and said, “Do you remember the mother in Walmart.. ” I did not need to continue for he stopped me and with shame in his eyes, said “Yes. I do.”

I wish I had known then what I know now, for I would have gone up to you and given you a smile, a look, some kind of encouragement, or an offer to help, because now I understand. I understand how going shopping is not easy or fun.

Autism has changed our lives in more ways than I can count. We can no longer just do something on a whim, everything has to be planned and carefully executed. We have to tell our daughter where we are going, for how long and who will be there. She needs to see pictures of things ahead of time to ease her anxiety. We can’t plan more than a couple of things in a day and our home life is all about schedules, to do lists and timers. We have a sensory-friendly home and need to keep chaos to a minimum; it’s all about structure and routine. Autism has cost us friends. We had a vision of how our life with our daughter would be and autism has changed that. We were social butterflies. Our daughter cannot handle that lifestyle. I can only imagine the vision you had and had your life changed as a result.

I now know you were incredibly brave and strong to be able to go out and do your shopping, knowing what most people were likely saying about you and your family or your parenting skills. That takes some kind of courage and I applaud you for that. I now know I am sure you were doing the best you could and being the best parent you could be for your daughter.

You have had more of an effect on me than you know, and I think you are partly the reason why I blog and the reason that I spend a lot of my time as an advocate trying to educate and raise awareness.

April 2 is World Autism Awareness Day and it is why I have chosen to apologize publicly to you for the ignorant and shameful way I acted.  It is my hope that with this letter I can change maybe just one person’s awareness and education of autism and the effect it has on our children and the lives of those around them.

From the bottom of my heart, I am sorry,

Rebecca

To Medicate Or Not – The Monkey

To medicate or not to medicate: that is the question. But who has the right answer?

For us, the decision to medicate did not come lightly. We had been thinking about the possibility for almost a year before deciding to take the plunge. The mood swings, the anxiety, the self-injurious behaviours, which were becoming more extreme, were simply becoming too much. I could no longer stand back and watch as my Monkey crumpled into a world of self-hate and anxiety. I could no longer stand back and watch as he slapped himself in the face.

We had to examine at what point do the risks associated with medication become more manageable than the reality we were living?

I have written about the Monkey’s anxiety in numerous posts, anxiety so severe that it takes over even when he is doing the things he loves; anxiety that makes it almost impossible for him to cope with the world around him. After Christmas I, once again, had to sit outside of his bedroom for him to be able to fall asleep. His anxiety would take over and he was unable to get out of that loop. This was our breaking point. We were regressing back to a time when he was 5 and could not fall asleep without planning out every detail of the next few days. None of us could go back to that.

We weighed heavily on the side effects of not only the medication, but of chronic stress and anxiety. Stress can destroy the body, weakening the immune system, causing sleep disturbances, weight gain, and damage to the brain.  (Click here to read more on that). 

Being in a constant state of high anxiety may potentially be more harmful than the side effects of current anxiety medications.

In the end, the risks of medicating seemed minimal compared to not, especially if it meant allowing the Monkey to have a better quality of life. We hoped that giving him a small dose of something could ease some of the aggression, anxiety, and rigid behaviours. We spoke with our family doctor and our pediatrician who both agreed that medication may be our only option.  With this we started on Risperidone.

Risperidone does not help with anxiety; rather, it is meant to help with the aggression, meltdowns, self- injurious and repetitive behaviours—and boy did it ever! Within a few weeks his moods were more stable, he was laughing and playing more, meltdowns were almost unheard of aside from those caused by anxiety, but even those were improved. The Monkey’s anxiety seems to affect him a little less now as the anxiety that stemmed from the repetitive/OCD behaviours has almost disappeared.

At school this has translated into him being more focused, calmer, less fidgety, and more engaged. His teachers even said his anxiety at school seems to have almost dropped off the map as they notice less and less ticks.

I watched as he skipped and hummed halfway to school the other morning. My jaw almost dropped. Who is this happy little boy before me? Who is this boy who will sit and talk to me now without getting angry or upset? Who is this boy who will answer a direct question? Seeing all these positive changes proves to me that medication was the right choice for him. Medication means that he is actually HAPPY!

My Monkey is happy and that is the only thing I need to see to settle any doubts I had regarding our decision. It has been two months since we started a low dose of 0.25 mg of Resperidone and I do not regret it at all. We will likely still need to add an anti-anxiety medication to help with the social anxiety that still keeps him from enjoying, or even trying, anything new, but we have decided to wait and see what grade 1 brings and how he copes with the transition.

Medicating your child is a very hard and personal decision, but sometimes it is the only option. As I watch my boy smile more often, I know we are doing what is best for him. Before we reached our tipping point, I probably would have said I would never medicate my child, but Autism has taught me to never say never!

A happy toothless Monkey!

A happy toothless Monkey!

Sabrina

To Medicate or Not

Deciding to medicate your child with ASD is not an easy decision to make. For us, MJ has been on medication since she was two weeks of age, but it has been for reflux related symptoms. Over the last 5 years we’ve had several different GI-related meds for her and have tried multiple times to remove them, but in the end, they are vital to her health and well being. Without them, she won’t eat. So the decision has been easy for us on those medications.

What has not been easy is deciding to add medication for her anxiety symptoms. When MJ was diagnosed 2 years ago, she was given a diagnosis of high-functioning Aspergers with high anxiety and OCD-like tendencies. Our psychologist stopped from giving her a confirmed Anxiety and/or OCD disorder but warned us it might be possible in the future. It was his hope that with ABA therapy we’d be able to teach her how to reduce her OCD and anxiety symptoms enough to eliminate these as standalone co-morbid disorders, and they would be just characteristics of her autism spectrum diagnosis that we could manage.

This worked for a while, in fact I can say that our ABA therapy did wonders for her OCD behaviours and while she still can be obsessive in nature, it usually only comes out when she’s overly anxious or verging on a meltdown. We can live with that.

However, all the therapy and current tools in our toolbox have not been able to reduce MJ’s anxiety. In fact, it has gotten worse since she started school – which was to be expected since that is arguably one of, if not the biggest changes in a young child’s life.

One year ago we started down a path of investigating the possibility of seizures or epilepsy with MJ. All of us around her had started to notice that at times she would get these deep purple circles under her eyes and have a need to shut the world out and zone out for anywhere from a few minutes to several hours. Sometimes these episodes would involve her blocking out parts of her day.  That was a scary time for us when whole hours of her day would just disappear from her memory.

MJ’s EEG was inconclusive. It showed suspicious activity, but not enough to rule seizures in or out. The neurologist said all it really shows is that her brain activity is different or atypical, so it could simply just be a confirmation of her diagnosis. He sat down with us and asked us questions, history, he listened – that was one of the longest doctor appointments of our lives (besides her diagnosis appointments). He was thoughtful, he pondered things and wrote notes.

The neurologist had a theory, he told us about something called abdominal migraines. I had never heard of them before but I do get the occasional migraine, maybe 3-4 a year and as he explained the symptoms it sounded like a very real possibility. He believed it was possible they were triggered by stress and that her anxiety was a real problem. School was just around the corner and while we were working hard to get MJ ready, she was having a lot of trouble with the concept.

He mentioned that medication may be something we would want to consider, but we all thought it would first be good to figure out episode triggers. So we began keeping logs (not unfamiliar to us), and we were able to determine there seemed to be two triggers, one was stress, the second was nitrites. We removed nitrites and the frequency of these episodes decreased slightly, but not enough.

Some of her episodes were so bad they would include vomiting. They usually were triggered by big changes or stress, a summer vacation, school visits etc. The neurologist became 60-70% convinced these were migraines and they were triggered by stress, but still not enough to rule out seizures. We all wanted to keep her off meds, so we came away with recommendations for increasing prep and working on anxiety reducing tools. But it was acknowledged that after 1.5 years of ABA therapy if we hadn’t achieved that yet, we might not be able to find the right tool to help.

School was hard on MJ. We’ve come a long way but we still struggle with the need for prep she has and the school’s ability to provide it. Because MJ holds things in and is high functioning she really doesn’t show like a student who needs constant support and they honestly can’t be expected to provide that kind of support. While I have been vocal before about feeling like she isn’t getting enough support from time to time, I also know that is not practical or possible for them to be able to prep her in the way she needs because life is unpredictable. They can’t know if a student or a bus driver is going to be sick. They can’t tell there will be a loud noise or an upset child or some other unexpected routine change so far in advance to warn her.

We continued to log, we continued to try different things. But we’ve watched as over the last few months things have gotten worse. The logs show these episodes generally occur on average twice a week at school and are not getting better. At home and daycare we also see these episodes, but we also see more aggressive behaviours when there’s been any kind of unexpected surprise or something slightly different.

I’ve listened as my child adamantly refuses to leave the house, or begs to not go to school because she just can’t handle what is going to happen that day. I’ve watched as she’s become anxious over fires, insisting on leaving the house in -40  degree (celsius) weather, intent on practicing our ‘fire plan’ just in case. I’ve been there as she she suddenly gets lost and has no idea what to do, and begins anxiously repeating “What should I do? I don’t know what to do, maybe I should panic?”

I’ve been there as I’ve been unable to calm her in these situations and she starts to hyperventilate and in some cases even try to bang her head off the wall repeatedly; finding some inner strength that over powers me and usually ends with her lashing out at me physically. I’ve been there in the middle of the night when she wakes up crying or wakes up telling me she can’t sleep because she’s worried about something. These somethings can be random and meaningless but still so important to her at that moment that she wakes up obsessing over them; down to waking up worrying the house is on fire or thinking I am going to die.

Recently she had the opportunity to join the Mad Science Club at school, she jumped at the chance after hearing what they would be doing, as this wonderful, amazing girl of mine loves science. We were thrilled. We signed her up and went about all the prep we could. The morning of her first day she came running into my room telling me she couldn’t go to school; she couldn’t do Mad Science. She then proceeded to change her outfit three times desperate to find something to wear that would ‘make them like her.’

That’s when it hit me, her anxiety was starting to interfere with the enjoyment of her daily life. That was the flag we were told to watch out for. Suddenly the words ‘medication’ floated in my head.

We then had a doctor’s appointment for a weight check in and a follow up after an episode that landed us in the hospital on Boxing Day. The Dr. confirmed two things. 1. After a very thorough set of testing, her December episode was a severe abdominal migraine caused by the stress of the holidays, a family party and other setting events at home (Dad’s broken ankle, a basement flood) and 2. MJ’s weight dropped five pounds in five months. She eats fine at home and at daycare but comes home with nearly full lunch and snack containers more often than not.  School has been the only thing that has changed in the last five months. Our doctor asked MJ some questions, she told her that she pretends a lot when she’s at school that everything is fine, but it’s usually not. She’s worried what people will think of her even her teachers so she only tells them when something is bothering her when she’s really upset. My doctor looked at me and said I think it’s time to talk about at least trialing medication.

We had a few weeks between this appointment and the next check up with the neurologist but we were pretty sure he was going to confirm. We spoke to our psychologist and did not receive any surprise reaction to this news, just support.

When we met with the neurologist he looked at everything, listened to us and even spoke to MJ. He asked about our recent vacation. She told him she had an ok time, but she never wanted to go on vacation away from her house again. It was too hard. She worried too much and she missed her home and her bed too much. I nearly cried. We tailored our recent vacation to MJ’s tastes, we prepped, we had a social story, we found turtle after turtle for our turtle-obsessed girl and other animals.

He spoke to her about her worry and she told him honestly that she knows she shouldn’t worry so much, but that she does. She told him how she wakes up at night, she told him the things she worries about and how when she is in a situation where things aren’t planned out, she doesn’t know what to do, so she worries and thinks she needs to panic. He then asked her “What if I could help you worry less, would you like that?” I will never forget the look on her face or the words she said next.

With the widest of eyes, she looked at him and said “I would like that. I would really like that very much. Maybe I could learn to have more fun then.” I’m in tears as I write this sentence. It literally broke my heart and I felt so helpless in that moment. My sweet, sweet girl is suffering beyond belief and she knows she is and she can’t do anything about it and so far nothing we’ve tried has helped. In that moment, I became at peace with the decision to medicate my daughter for anxiety.

The decision to medicate is a very personal one and one not everyone we know will agree with. Many don’t see the side of MJ we see. For five and a half years of age she is so self aware and so aware of the world around her that she knows she is different. She desperately wants to fit in so she tries to hide everything and holds everything in until she no longer can and the moment the front door closes it usually all comes tumbling out. She’s started to show this side to her daycare as well, but even then that’s far and few between and it took close to three years before she had her first meltdown there.

Sabrina also decided to put the Monkey on medication just after the holidays. They chose to medicate for different reasons and are using a different medication than we will be. She will be following up with a blog post shortly that talks about their journey and the outcomes they’ve seen since starting the Monkey on his medication.

I understand how some may look at us and think we’re needlessly medicating, but at the end of the day, all we can do is listen to our children and to what’s in our hearts.

Hoping for an anxiety-free day, one day,

Rebecca

Baking Can Soothe The Soul

As we face our third or maybe fourth snow storm in about 10 days, and second ‘blizzard’ warning anxiety was in high gear in our house. MJ doesn’t like storms of any kind, especially not after Hurricane Arthur crashed her birthday party last summer. Her anxiety takes over and she worries about everything from power outages, to how the animals and trees outside will fair all the way to being concerned about getting into car accidents and fires. So it was no surprise when she came home after school/daycare with the snow already falling that she was on edge.

We have also been struggling with MJ’s eating as of late, not at home or at daycare, but at school. She has lost nearly 5 pounds since starting school and trust me when I say she didn’t have 5 pounds to lose. MJ told us that she really is still quite anxious at school and feels the ‘green liquid’ (aka her reflux) pretty much all the time, she just doesn’t tell anyone because she doesn’t want people to know. She went so far as to be proud of the fact that she can ‘hide’ how she’s feeling and pretend like everything is ok, she just doesn’t want to eat as a result of all that pretending.

Uh oh… Needless to say we have a doctor’s note and are working with the school on strategies to address this.

The other challenging part of MJ’s eating issues are her allergies and food intolerances that trigger really bad reflux episodes. She’s on meds for her reflux, but even so has to eat a pretty restricted diet as a result that cuts out all dairy and soy, as well as citrus from her diet. It means essentially no processed foods (not a bad thing), but it’s yet something else that makes her different. It wasn’t a huge deal until school started, but as she sees her classmates coming to school with all kinds of things she can’t eat she has begun to ask questions. And at times she express her sadness and disappointment that so many ‘fun’ looking foods are not MJ friendly (a term we coined that she knows to ask before eating something if mommy or daddy are not around and she is offered food.)

Today in amongst the concerns over power outages and worrying that mommy was going to die one day, she told me that one of her classmates had a cinnamon bun for snack and it looked so good and that it made her sad. Immediately my hubby reminded me we had an aunt’s awesome cinnamon bun recipe that I’d tried to make MJ friendly previously but had failed at. Since that time, I discovered a dairy-soy free margarine that has made substitutions easier and 95% of the time you honestly can’t tell the difference.

I’ve been trying to get her more involved in cooking with me, hoping that if she helps she might be more inclined to eat. It has been going really well for the past few weeks, so well that MJ has decided that she wants to have a cooking show with me one day called ‘Scratch – Cooking for kids with allergies’ and has had me videotaping her as she ‘prepares’ food with me for the week. (For reference, we only started letting her watch MasterChef Junior AFTER she came up with this idea of having a show).

So tonight, after dinner, I decided to suggest we make our own batch of MJ-friendly cinnamon rolls so she could try one and if she liked them, bring them to school with her. She was game!  And it turned out to be the most positive experience:

– It was a distraction from the storm, reading a recipe and measuring ingredients for baking is exact and requires focus
– Kneading and rolling out dough is sensory and as she worked that dough, she talked less and less about power outages or ‘what if mommy dies’ scenarios
– She couldn’t wait for them to come out of the oven and eat one. We struggle with positive food associations because of her reflux and as I noted above, her diet is pretty limited (although healthy).
– She liked them! She can’t wait to take them to school and show her classmate that she made an MJ friendly cinnamon roll too – and (in her words) ‘be just like everyone else’

The only problem? They are so good they might not last that long! Here’s a couple of our videos and of course photos of the finished product!

Rolls out of the Oven

Eating Cinnamon Rolls

The Evils Which Lurk On Facebook

Today my news feed has been filled with horribleness.

Not only do Rebecca and I run a blog and Facebook page but we also follow many of the lovely, informative, and heartfelt pages on Facebook which are primarily centered on Autism.

It is like being part of a little community. No one knows each other yet we can relate to the hardships and the joys which come along with this journey. Most mornings I happily read through most of the pages I follow. I like, comment and share. Today I saw anger towards a page filled with hatred.

A Facebook page was published which attacks the people whom we love the most. A page which shares hatred towards the very community which I so openly praise. So like other’s who felt like this page disgusted them I reported the page to Facebook thinking Facebook would promptly remove it.

This however did not occur. Instead I received the following message from Facebook: Capture

I don’t know who has offended me more, the page and the hatred it is spreading or the lack of compassion received from Facebook.

How can an entire page filled with hate speech towards those with disabilities and their loved ones not be violating your “Community Standards”? What is the point of allowing us, the people who use Facebook, to report pages that are attacking an entire group of people if you, those who maintain Facebook, will not even take the time to acknowledge that something is wrong? Are your standards so low that you deem this to be acceptable? How do you allow pages like this to continuously pop up? Should there not be a filter that prohibits the publication of certain things to begin with?

This is unacceptable!

After numerous reports were filed it did get taken down only for a new page to be created in it’s place!

I understand that Facebook can not monitor every single page which is created but there should be certain filters in place which prohibits these types of pages from ever being created. They should be censored in a way that does not allow certain language to be used not only when creating a page but when publishing pictures, articles, etc…

And when pages like the one you see above are reported to you it would be appreciated that you have someone take the time to thoroughly look over the page to it’s entirety. Sending someone a message indicating it is not infringing on any community standards you have decided on is in no way acting in the best interest of your users.

You should be ashamed of yourselves for continuously allowing this to happen. There are probably hundreds of pages which are directly attacking minority groups on Facebook. In a small way you are an accomplice to the hate that is being spread. By not thoroughly investigating these pages you would be partially to blame for the impact it has on the people who read them.

I am in the end disgusted by the creators of the page, who think that it is funny and entertaining to attack a group of people and also with Facebook in allowing this to happen over and over again.

Sabrina

 

%d bloggers like this: