My Autism Disclaimer

This is a difficult post to write. Not that it is emotional for me, but rather…confusing. There is a lot of talk out there about autism, what causes it, who gets it, and that it is on the rise. There are also those out there that claim autistic children are ‘indigo children’ sent here from the aliens’, or God, to teach us how to really communicate and to prepare us for the end of times. I almost feel like I need a whoopee cushion to read back what I just wrote, for appropriate sound effects.

There is also a large group of people who believe that autism is curable and there are many studies to back the claims for special diets, supplements and detoxing chelating therapies.  This same group believes that vaccines cause autism and that mercury is still a key ingredient in the vaccines given to our children, and that mercury poisoning is causing autism.

I want to make it really clear here, that I am not on any side of these issues. I am on Matthew’s side and I am on the side of any parent that feels they need to do whatever they can do the help their child.

I don’t know what causes autism. What I do know is that I have not ever met two autistic children that are the same. What this tells me is that autism may have many causes, many symptoms, and many different outcomes. It occurs to me that maybe what we call autism today is really something else presenting as autism symptoms. I don’t know, I just feel it.

What I do know for sure is that the medical community needs to open their minds to exploring alternatives for children presenting with autistic symptoms. At the time of diagnosis the child needs a plan created specifically to that child that may include biomedical interventions, as well as behavioral interventions. If we discount what the ‘Jenny McCarthy’ group is saying, then we may be missing a key component to helping these children. At the same time it is important for parents to realize that not all children are the same, and they will not all react the same way to biomedical intervention. Therefore it can also be said that they will not all react the same to behavioral intervention either, which is why there are several different approaches on the market to try.

That being said I have included a link for the Talk About Curing Autism web site to my blog. http://www.talkaboutcuringautism.org/index.htm
I decided to include this link because I think this is an excellent recourse for parents wanting to try the GFCF (gluten free dairy free) diet intervention for their child. It is full of great recipes; product lists, and advises on how to work this diet.

Anyone whose child has been diagnosed in Vancouver at Sunny Hill would have been told what we were told. These diets don’t work. Don’t waist your energy, money or time. Personally I think that is terrible advice to give a parent. The better advice to give would be to try the diet; if you feel you need to, for a time. If you see no significant change then go back to they way things were. If you see changes that matter then stick to it religiously. It is just food, not drugs. The worst that can happen is that your kid will like gluten free waffles and you will be stuck buying them until he is on to something else!

When we were given that terrible advice it did stick in my head that there was an alternative. Because to say that these treatments don’t work they had to be mentioned. How silly of Dr. Narrow Mind! Don’t tell a desperate parent that they can’t do something!! I got on the Internet and researched the alternative treatments. In the back of my mind I stored the information, bookmarked what I felt might be relevant to us, and discarded the indigo theory out right! I was keeping mental notes on what Matthew ate, and starting to associate foods with behaviors.  But I was afraid. I was afraid of what people would say if I did anything alternative without a significant medical reason.

So it was almost a year later when Matthew was skinnier then a post and heading into an invasive heart surgery, vomiting regularly, and on a wait list to see the gastroentronologist, that I called the pediatrician in a panic. What are we going to do? He will only eat toast and drink milk.

Thankfully our ped is educating himself, to an extent. He gave us the go ahead to try a gluten free diet. The changes we saw in Matt were remarkable. Within 24hrs he was eating more food then he had eaten in a week! He was happier, calmer, less reactive and his language nearly doubled.  We have not looked back since. He is not cured, by any means. But he is better.

There have been times when Matthew has grabbed some wheat toast when my back was turned, and I did not see any adverse reactions, other then maybe some unusual stools. But I am not going to experiment with something that made such a remarkable difference to him. Maybe when he is older and can communicate more efficiently we might try putting him on a regualar diet. Life might be easier then. But until such time I am sticking to this gluten free thing.

We did not try the dairy free route because, to be perfectly honest, I just cannot imagine having to manage that when I have a perfectly normal typical child who drinks milk by the gallon. How do I say no to one child, and not the other? How would I balance their specific needs? It is already such a challenge with them being so close developmentally. It is much like having twins, even though they are two years apart. If I could imagine a way to do it, I would certainly try.

This leads me to my conclusion on this subject. Every child, family, and situation is different. Parents should be encouraged to do what they can and not discouraged from trying something that might make a difference. If trying an alternative does not work then you have just narrowed down the list of causes for your child’s condition. And that can only be a good thing.

I feel like there is so much more to write on this topic. I have really only touched the surface.

When I think of what I would like this blog to be and how I can make that happen I feel totally inadequate, overwhelmed and humbled. Because, even though we have been through so many horrible and scary experiences with our son, Matthew, it is so small compared to what so many other parents struggle with daily. Here are some sobering words from a poem sent to me through the Moms on the Move network.
Some of the content is American based, which just helps me to count my blessings, and be thankful that we have a medical system that does is best to take care of our children, despite cut backs and a lack of medical professionals to go around. I am grateful that I have never had to argue with an insurance company or make a choice between groceries or medical care. I am grateful that I live in a place that understands that our health is more important then national security. And I am grateful that my child continues to improve under watchful care of community workers, health care professionals and government agencies. Some might say that our Canadian systems are not perfect and the government needs to do better. I say lets keep working at that, and at the same time, thank God we live in Canada. Let's pray for a better future for our American neighbours.
I didn't intend to get political in this post...it just happened.

Where are the Parents?

By Sue Stuyvesant

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.

They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.

They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.

They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through?

They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.

They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm.

They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of there own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.

They are struggling to keep a marriage together, because adversity does not always bring you closer.

They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.

They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Ahhh! The farmer’s market! A place brimming with hope and vitality! I just love the idea of sustainable, organic, locally grown food. The sights and sounds of the market are a soothing balm for my overly crowded mind. A place full of possibility, interesting people and interesting food.

However, a farmer’s market can be an absolute nightmere for an autistic child, and his parents. Today was our third attempt in a year to take Matty and Simon to the Trout Lake Farmer’s Market. The last two attempts ended in screaming fits, tears and frustration for all. The only reason today was any different from the other attempts was that we did not take Matty into the market at all. Paul, my dutiful husband,  and the boys spent their time in the adjacent playground. After fetching a steaming organic latte for my hubby, I peacefully strolled thru the market soaking up the atmosphere and picked up some organic apples to make a gluten free apple crumble for dessert. All so blissfully domestic and old worldly.

So, what is it about a farmer’s market that is so scary? Well, the dogs for one. Matthew can barely pass a dog with out trying to climb up to the top of one’s body to sit on one’s head to get as far away from the dog as possible.

The unpredicabilty of people weaving from one stall to another, baby strollers breaking from the crowd unexpectedly, loud guitar music from the busker, and the busy energy of the place is all just too much for a child suffering from sensory disorders.

For typical families a morning at the farmer’s market is just par for the course. Nibbling on fresh baked organic cookies, and sipping organic lattes while picking up fresh produce for the evening meal while their sweet young babies snooze in their prams is an experience I have never been able to enjoy.

Any time we have tried to do anything remotely similar is usually ended abruptly by a temper tantrum so intense that people start looking at us wondering if they need to call Child Protective Services!  Ok, I am being overly dramatic again, but certainly our first market experience was much like this!

We have made huge progress though! We now know better then to take Matty into the market at all and we head straight for the play ground first. This way he doesn’t have to get overwhelmed. Last year Matthew was not able to visit an unfamiliar playground. He would get worried, cry and want to go home. Now he sees the swings and practically jumps the fence to get in there!

So there is hope that one day he will be able to enter the market and fully enjoy an  organic family outing! Can you imagine taking him to the PNE??

So I offer you here a recipe for gluten free apple crumble. This recipe is modified from my mother-inlaw’s version made with wheat flour. I have simply swapped the wheat flour for the gluten free pancake mix. This is NOT a dairy free recipe. To make it dairy free simply replace the butter with dairy free margerine, and use a dairy free gluten free flour mix.

Ruth’s Apple Crumble

Topping

6 tablespoons butter or margerine

6 tablespoons shredded coconut

6 tablespoons brown sugar

2/3 cup gluten free pancake mix (Pamela’s)

Place all above ingredients in a small mixing bowl and with clean hands rub the butter into the mix until it is evenly distributed and crumbly.

Stewed apples

Peel 5-6 med apples

½ cup water

Cook until soft in a small saucepan aprx. 5 to 10 min. Most of the water should be boiled off.

Tip: if using very tart apples add a tablespoon of sugar while cooking apples

Grease an 8X8 baking pan. Pour stewed apples into baking pan. Make sure they are evenly distributed.

Top the apples with the topping mixture making sure to completely cover apples evenly. Bake in the oven at 350 for 30-45 min, or until the topping is golden brown.

Serve warm with vanilla icecream, or dairy free frozen dessert.

Serves 6.

 What is in a name?

A little side bar to this post...I heard somewhere that giving food fun names makes eating that food more enticing for children. So, just to prove this point I placed slices of black bell peppers, that I had purchased at the market, on the boy's dinner plates and told them it was 'chocolate peppers'. Simon examined his and decided to feed them to me. Matthew gobbled his up like they were cookies!!

I have made this apple crumble for the boys many times only to have them eat the ice cream off the top and leave the dessert at the bottom of the dish, looking at it like it was a slimey blob of spinach or something. Last night I told them it was 'apple cookie crumble', and with out hesitation, they gobbled it up! The high light of my day!!

Beauty is more then skin deep

I was going to write my second post on how to introduce your child to a gluten free diet, but then I turned my TV on to the new Dr. Oz show and immediately changed my mind. I have been looking forward to this show since he first announced he was going to do it. I just love Dr. Oz. I love all the gross details about our bodies that he is willing to discuss on television!

His guest today is Tim Gun, the host of Project Runway, and an educator for FIT in NY. Dr. Oz introduced him by saying that how women feel about themselves is so closely linked to how they feel they look. That beauty can make a woman feel better about herself and therefore impact her overall health. I could not agree more! This is what I am all about! Tim was helping women who have gone thru chemotherapy for breast cancer to update their look and get some of their groove back after such an assault on their health.

I spent many years working in the cosmetics industry. What I loved most about the job was getting a women in my chair, teaching her something about how to enhance her beauty, and actually seeing the spark in her eye when she was pleased with what she saw looking back at her in the mirror. I think I actually would get high off this some times. To know that I positively impacted someone’s day and made her feel great about her self was a real trip!

I myself have been trying to give myself a makeover, from the inside out! There have been so many days when I dropped my kids off at pre school after a no sleep night, with bags under my eyes, no makeup, greasy hair and clothes that I pulled from a pile on the floor.  I was staying up too late at night watching some frivolous TV, thinking I was having my ‘me’ time. I would lay around during the day thinking I was resting because I didn’t get enough sleep the night before. I would do the bare minimum to get thru the day on survival mode. My hair looked bad, my skin looked bad and I felt bad.

I gave myself permission to give up on myself because looking after my children took so much time and energy.  What took me a while to realize is just how intensely my poor care of my self was related to the care of my family. I used to think if I could become more self-sacrificing that I would benefit my family.  If I don’t spend money, don’t spend time, don’t spend energy, that there would be more for them.

What I know now is that this is just a big lie. It is time to really understand what ‘looking after yourself ‘ really means. I used to think it meant buying new clothes, wearing make up and getting a massage. But what it should mean is eating right, getting as much sleep as possible (in some other universe, right?), exercise, and most importantly, indulging in something you are passionate about.  Wearing a little make up and a new dress doesn’t hurt either! How you treat yourself will teach your children how to treat you, and essentially, how they will treat themselves when they grow up.

My First Post

Welcome to my new blog! This is the very first post for Bumps and Bruises. In this blog you will find a place full of useful, and maybe not so useful, information.

This is a blog for moms. If you have a child with special needs, or allergies, or maybe just typical children in not so typical situations, you may find something here to interest you.

I might not know much about much, but I do know a little about a little! I don’t fancy myself a writer, as many in my family are. The mere thought of writing a blog used to send me into a spiral of self doubt. I come from a line of smarty pants siblings who themselves write blogs, and read really big books with really big words. I have always been more of a practical girl. I like to indulge in hand crafts and I once had aspirations of being a fashion designer. Sometimes I still do and I have fantasies of competing on Project Runway! I am a mom of two little boys. My older boy, Matthew 4 1/2, has many health issues and suffers from ASD (Autism Spectrum Disorder).  His birth sent me on this new journey of learning things I never thought I would know, that most mothers never know. And my younger son, Simon 2 ½ yrs, is as typical as they get.  Together they form a formidable team focused on driving their parents insane! And I must say, they are doing a fantastic job of it!

A year ago Matthew had open heart surgery to repair a congenital heart defect. This was a difficult time, but it sparked a fire inside me to reach out and support motherhood. Before this time, and even now on not so good days, I find myself wondering what I was thinking, having children. Why did I sign up up for this constant sacrifice of self? I look in the mirror and see my aging, tired face and barely a flicker of the girl I once was. I have been trying to lose the same 30 pounds for two years. It is rare to get a full night sleep. I am surrounded by clutter and toys, laundry, dishes and a list of ‘to do’s’ as long as my arm.

On good days I remember that little fire inside me, the one that tells me that motherhood is the single most important thing that women can do to change the world. Raising happy, confidant, loving, healthy children ensures a brighter future for the world.  So in the spirit of the later, I write this blog to remind myself to stay positive, to focus on what I am good at, giving unsolicited advice, and to leave the the rest by the wayside.

My lofty goal for this blog is to be a place full of information to help moms be moms, and to give encouragement, and sometimes just a little distraction from the every day. My hope is to collect guest writers along the way and to create a community of support for mothers who are stretched thin and feeling weary. There may be recipes, diet tips for children, medical information and thoughts on raising children in difficult circumstances.  There may even be some make up tips and ‘find time for yourself’ tips!