Grieving

When a friend and colleague, with a lot of Special Education background, realized that I had taken a leave of absence from work, she said to me, "It can be very stressful to receive a diagnosis of ASD, so that's understandable for sure." I replied, "What? No! I love Asperger's! (and I wholeheartedly meant that and still do) But I have some other stuff going on in my life right now as well..." Retrospect says to me that, although I had had suspicions of autism for over a year, I was in one of those stages of grief that people talk about.

I have been grieving. There. I said it. I am working through the grief. It's not easy to hear that your child has autism. I even had a bit of a headstart, suspecting ASD at least a year ago. My lovely and supportive colleagues at work will remember that day. To have the grief perspective now, explains a lot of my personal challenges over the last year. My hope is that people will also reflect and forgive me for for not being me. This is not to say that I have any guilt. I did the best I could, and continue to do the best I can. But doesn't it also lend perspective to accepting people's differences...? Something to think about... I will get back to being me again and when I do, those know me will welcome me back.

According to my Google searches :), the stages associated with grieving a diagnosis for your child look somewhat like this:

Shock
Parents may not accept the diagnosis and look for another doctor to tell them something different.

I think I was in shock that day last September, a year before the diagnosis, but I've never looked for another doctor to give me a different answer. My experience in Special Education has given me reasonable perspective, and put that together with the number of assessments we did over the last year and a half, there are too many professionals who agree that a diagnosis is accurate. Likely, I experienced it again the day I got that piece of paper with the word "Asperger Syndrome" on it, signed by the doctor, dated August 14, 2012.

Sadness/Grief
Parents mourn the hopes and dreams they had for their child and will experience periods of great sadness.

Can I get a "hell yeah!". I have good days and bad days. Some days I feel hopeful. Some days I feel relief; especially when the teachers tell me what a great day Sienna had at school, and I see that reflected at home. However, some days I feel very sad. Those are the days I don't want to leave the house and I don't wish to talk to anyone. Or the opposite. I want to get the heck out of my house, avoid all the housework, and talk my friend's ears off about all my "problems". Thank goodness for my friends... As parents, all we ever want for our children is an easy life. No bumps. No hardships. No sadness. And this one is out of my control.

Anger
Parents may direct anger at those closest to them and may feel resentment toward people with typical children. They may overreact at small things, snap at people, and possibly yell.

I'm not going to lie. I have felt resentment knowing that our family will always have this "extra" challenge in our lives that others don't have. But I'm beginning to come to terms with that, knowing that everyone will have challenges in their lives. This one is ours. And I'll be the first to admit, my diplomacy is not getting from my brain to my mouth on occasion! :)

Denial
Parents may refuse to believe this is happening to their child.

I think my denial stage has been to keep myself busy. I have spent hours upon hours of filling out paperwork, calling community agencies, keeping in touch with the school (poor teachers!! LOL), and setting our house up appropriately for our daughter. Now that I have a handle on that stuff, I have been able to move in and out of the other stages...

Loneliness
Parents may feel they don't have time to contact friends or family, or that if reached out to, they wouldn't understand or be supportive.

For sure I have felt this way. But it's really interesting how people "come out of the woodwork" with support when they know you're hurting. I was able to keep some of my girl's nights out here and there but totally dropped the yoga unfortunately. I think everyone however, with two young children, goes through this at times. For us, the new school transition caused health concerns with Sienna and it took both parents to be home to ensure she was okay (along with our son), not to mention other significant stressors going on at the same time. So, I'm beginning to organize my life somewhat and trying to figure out how to find that "me" time in our busy lives... I recognize that I have to take care of myself in order to be emotionally available to my family. That is where my work begins. Back to yoga I go!

Acceptance
Parents will begin to accept the diagnosis and accept autism. This will allow them to learn about autism and begin to advocate for their child.

I am thankful for the very basic knowledge I had of autism prior to receiving the diagnosis. It is nothing, however, compared to what we have still to learn about our own child. We will always be educating ourselves, trying new things, figuring out what works, and reading more. Parenting a young child is something we've never done before. Parenting a child with autism is something we've never done before. The learning curves are steep and we are always looking for new ways to support our children.

It's important AND healthy to go through all these stages. And personally, I have to remind myself that I may revisit these feelings from time to time... and that's okay.

There is a really great web site called Autism Speaks which also has an iPhone app that I'm in LOVE with!! There is great information here including a blog, information about family services, scientific news related to autism, how advocacy and action are supporting autism, news, and videos. I'm sure I will be sharing and posting videos and articles there in the future. In the meantime, check it out!!

Common Misperceptions

I think that many people have misperceptions out there of children and adults with autism. Now, I'm surely no expert but autism is not Rain Man (sorry but that's not typical in my eyes) or the crazy guy in the corner banging his head on the wall and talking to an imaginary witch doctor (I say this in jest!). Autism is a spectrum - which means that depending on the number of symptoms a child has, that will determine the placement on the spectrum. All people with autism have difficulty in 3 areas: social interaction, language, and repetitive interests/behaviours.
For example, starting a conversation and/or participating fully in a conversation might be challenging: avoiding eye contact, not knowing what is socially accepted as the next step in the discussion. Language might be possible but expressing oneself appropriately might not be (hey, I know a few people like that that are not on the spectrum... Lol). Finally, many people with autism repeat similar behaviours like snapping or tapping or in my daughter's case, jumping, squeezing her fists together, and sliding her jaw to one side (for the moment).
Some widely known similarities among these children include the likelihood that many are visual learners. They often have sensory issues (such as sensitivity to noise, light, etc.). Often, fine and gross motor planning can be challenging, and awareness of safety concerns (like a moving car heading their way) is limited. These children often excel when given a structured routine and have difficulty with transitions from one activity to another. The way people express this difficulty can be in a variety of ways. With Sienna, it's anxiety in the form of extreme meltdowns, changes in sleeping patterns (night terrors), changes in eating habits (not eating), and holding her bowels. Aspergers is the mildest form of autism. Sienna has above average intelligence and vocabulary. She just has difficulty forming her sentences out loud, so people often mistake that for her lack of understanding... Not the case!! It is very hurtful when someone laughs at my daughter's lack of response to their questions. I know they don't realize that she is on the spectrum but it hurts nonetheless.
No matter where these children are on the spectrum, it's important to remember that they can learn, they can love, and they are loved. Verbal or non-verbal, all children hear what we say and see what we do. So say hello. Even if you may not get a so-called "typical" response. Foremost, the child will feel loved and secondly, the parent will be graciously thankful to have their child treated the same way that every other child is! And keep trying to get to know the child, even if he doesn't respond to you the first ten times. The time that you do get a response will be a very rewarding moment in your life.
As a parent first (and a teacher second), the earlier a diagnosis is given, the greater the opportunities to encourage understanding and support for the child to achieve his/her potential! My daughter is a good example of this. She already has so much in place, thanks to the myriad of agencies supporting us, that she has great opportunity to go far in this world! Do I worry about her future? Of course I do. She is going to face more obstacles than the typical child/teenager/adult. But I will do whatever it takes to let her define what success is to her and to support her in achieving it... Just like every other parent.

Please visit a link to view eight Common Myths about Autism.

The Decision to go GFCF

There is a lot of research to support a gluten-free/casein-free diet for children on the spectrum. Although many medical doctors do not agree, I decided to listen to other parents and, as well, go with my gut instinct.

As a new mom to this beautiful baby girl, a miracle in our minds after our high risk pregnancy, we really wanted to do what was the most beneficial for our baby: breast feed. Some people believe that if you just stick to the breast feeding, you can do it. I have to say that this is not truthful. I tried absolutely everything to breastfeed my daughter (and would try again with my son 2 years later), but it was not so. I had pamphlets and books that specifically discussed breastfeeding. I went on blogs and did internet research when I realized how challenging it was. I had a lactation consultant come to my house. I went to three or four clinics at the local hospital with the breastfeeding nurse. Each time, she weighed how much breastmilk Sienna was getting - lots! Weird, I thought. Then why all the crying? In the end, after four months of enduring multiple infections and blisters (you know where!), we decided that enough was enough. We moved on to formula.

Looking back on that experience and knowing where we are now with the sensory needs that Sienna has, being unable to breastfeed makes TOTAL sense. For a child who: A) can become overstimulated by touch and being held, and B) has underdeveloped muscle control in her mouth (which we recognize now), how could this poor kid ever breastfeed? She took to the bottle in no time. It was as if she was starving! The nipple on the bottle likely allowed for her just practice sucking, rather than having to ensure that there was the "perfect latch". And a bottle also allowed her to have a little more space from the human embrace which was sometimes too overwhelming. Even as she got older, now that I look back, she actually preferred to sit in her little tilted rocking chair and drink her bottles on her own; no human-induced-sensory-overload.

Little did I realize at that time, what challenges formula would bring. We were so relieved that she was more content with the bottle and things seemed better. The crying seemed to alleviate at least during the night as she started to sleep more soundly. However, around the time we switched to formula (5 months old), I began to notice her becoming constipated. Our doctor suggested prune juice, which I wasn't too keen on and looked up alternatives on the internet. We began with baby food and tested out prunes and pears. They didn't seem to help that much and we moved on to prune juice. I couldn't wait until she was 12 months old so I could begin with milk because I was sure that the formula was attributing to the constipation. However, when we switched her to milk, it remained. It got to the point that I needed to assist her with bowel movements. I could tell when she needed to go and I had to rip down her pants, lay her on her back, and hold her feet above her head to assist with the process. Horrible... and no end in sight. We continued with increasing the fibrous food intake and encouraged water whenever possible.

Right before her first birthday, Sienna ended up with a bladder infection, while we were on vacation in Mexico no less! Anyhow, when we were home and had an x-ray to determine if there were any physical reasons for this to occur, the doctors told me that her x-ray revealed that she held all of her urine in her bladder until it was completely full before letting it go. Interesting... not a physical abnormality, but just atypical. Most babies released urine frequently so I was told. When we got to potty training around 2 1/2, I should have figured out why it was so challenging. But I didn't!

At this point, it was time to do some research. There were a number of things that just didn't seem right. Now I know that many children on the spectrum have digestive issues. At this point, I had begun suspecting developmental issues. For some reason, I read Jenny McCarthy's book about her journey with her son who has autism. While I don't believe there is a cure for autism, I do agree that there are many strategies that can be put in place to support the needs of a child with autism - which will lead to greater success in self-awareness and appropriate social behaviour. When Sienna was about 3 1/2, we had her food sensitivities tested by a naturopath. A friend had suggested it and was having her 3 year old tested too (to support the onset of childhood diabetes). The top ten sensitivities included cow's milk and all the grains in the wheat family. We had the doctor test Sienna for ciliac and got a negative result. Hence, the beginning of the GFCF diet.

We (well, I) was very rigid with the absolute elimination of dairy (casein) and wheat/gluten products for the first 6 months and what a difference I saw! This was a different child within two weeks. She was more alert, more active, and more willing to interact with people. That was enough for me to solidify that this was the right choice. It may have meant adding a little more to the grocery budget and plan a little more for meals and snacks but it has made a very big difference. I have since read that the most highly recommended diet for a child with autism is (of course) GFCF with an increase in probiotics, decrease in sugars, fresh organic fruits and vegetables, vitamin D, coconut oil, and high fiber - all which support digestion. Well, shouldn't we all go back to our roots and eat what our grandparents did? I know I should. My grandparents ate "off the land" and both lived into their late 90's!! As Sienna has gotten older, it seems that she does not like the lack of control she has over when she will have a bowel movement. So although the diet has been met with great success, we are still looking for some answers... I have learned that many children on the spectrum, because of sensory issues, continue to have challenges with digestion. We're still working on that and constantly asking ourselves what we can do to make the poop happen on happy terms! Either way, in my heart I believe that dairy (casein) and gluten make a huge difference in her ability to cope with sensory stimulation.

I have recently received my first issue of Autism/Asperger's Digest and in it, I have found a number of ads for gluten free products! Verification. Validation. And we are lucky to have great friends and family who make sure they consider Sienna's diet when they invite her over for playdates or birthday parties. I do my best to pack snacks for every outing. I'm not perfect... so I really appreciate when I'm out of emotional energy, someone else making the effort to ensure that Sienna remains GFCF. It takes a village to raise this child...

Put on a Happy Face

What do we really know about emotions? Well, evidently they are not just about feeling, they also involve thinking...

I went to a free workshop today put on by Kerry's Place Autism Services. It was all about how to assist individuals on the Autism Spectrum to Understand Emotions. What we know about emotions is that there are 7 universally recognized: anger, disgust, fear, happiness, sadness, surprise, and contempt. What we know is that most neurotypical people recognize these emotions in facial expressions. What we know is that instinctual and cognitive emotions are controlled in the brain (in simplest terms).
What we know about autism is that the signals from the parts of the brain that modulate emotions are not getting to the prefrontal lobe, which manages emotional impulses. In other words, autism is a neurological disorder. It is not going away, nor can it be controlled. Emotions may be "managed" if strategies to manage emotions can be repeated time and time again. This is why social coaching at Sienna's age is SO IMPORTANT at every chance we get.

People with autism have emotions. They are expressed and felt in different ways than you or I. Sienna may hug sometimes and mostly, it is probably not to express love. It is more likely that she is expressing a need for sensory stimulation. Even though she rarely smiles, this does not mean she isn't happy. She just doesn't use facial expressions to express her emotions (like you or I). And she has a difficult time reading people's facial expressions and matching them with an emotion. This is something that we are constantly working on... "What do you think your brother is feeling right now?" (as he is laying on the floor crying and kicking his legs LOL) "Why do you think he feels that way?" (likely because you stole his toy)

I remember when Sienna was a baby and she would cry and cry and cry. My doctor told me it was colic. I knew it wasn't. Something was different. Jamie would stay up with her and rock her until 11pm while I would pop in the ear plugs and try to get some sleep to prepare for the next all-nighter. She would cry until I got up at 11pm for the night shift and then barely slept all night long. I remember rocking her in the chair each night and after a long time, she would settle down. I would rock her until her eyes were closed for at least a half an hour. Then, the second I would get up out of the rocking chair, her eyes would pop open and she would start crying again. I also remember one specific night where she just would not stop crying and Jamie's mom was over at our house. It must have been 3am and I just couldn't take it anymore. I came out of the bedroom myself, crying with exhaustion and Jamie's mom heard us and offered to take her. I felt so defeated. I always thought that a baby was supposed to stop crying when her mother picked her up and held her. It was heartbreaking... for a long time. Now, I get it. She didn't (and doesn't) express love and comfort in the same way as a "neurotypical" child.

A common myth of children on the spectrum too is that these kids don't feel compassion. Not true. They just don't express their compassion in the same way as other people might. For example, I am beginning to learn that my daughter feels my emotions. If I am stressed, it causes her stress. If I am upset, she internalizes that. Some of these kids feel emotions so intensely that they mistake other people's emotions for their own. Kids on the spectrum are more prone to anxiety, depression, and outbursts of anger (which we often see in the classroom). We have to remember to ask ourselves first - WHY is she feeling this way? and second - HOW can we coach her into understanding her emotions so we can have strategies to support her?

Children on the spectrum take things literally - until we consistently teach them how to interpret figures of speech. For example, if you say, I've got butterflies in my stomach, my daughter would be spending the next 5 minutes trying to figure out how that is possible. I imagine her thinking to herself, "well, how did they get in there? did they fly in there through the belly button? did that person swallow them? are they alive?" ... and the list of thoughts and interpretations of that one figure of speech goes on. Solution??: When a figure of speech is used, explain to the child what emotions or feelings are associated with it or what it ACTUALLY means and what it ACTUALLY does not mean :).

I could go on and on about teaching emotional intelligence. We just automatically do it in our home because we know we have to - in order to avoid and reduce meltdowns. Reading facial expressions is the harder one to teach as it requires actually stopping and freezing the face. There are a number of great children's books and i-phone apps to help us out... and many incidental teaching moments that occur on a daily basis which we try to take advantage of!