School issues

The end of Matthew's first school year is fast approaching. Overall it has been a great school year for Matt. he is learning new things, participating in the class, using more expressive language and has found his own unique way to connect with other children...most of the time.
There are times when things go sideways. Last week was a particularly tough week for Matthew, his teacher and the aids who deal with him. He reverted back to behaviours that we thought were a thing of the past. There were many contributing factors to a tough day; sickness, sub teachers, sub aid workers, a change in school routine. Last week all of these were factors in Matthew's behaviour. As his parent I can list them all and deal with the onslaught of behaviour with an understanding that things will normalize when his routine normalizes, and provide safety, discipline and routine at home.
However, the staff in the school are not always so savvy, and fair enough. They have other children to mind, classes to teach, activities to plan etc. The school can't stop for one wayward child.
Last week I was left with the uneasy feeling that these occurrences with Matthew will become more frequent, behaviour more extreme, and the tolerance for it will become less. It leads me to ask the question ' why does the government pour millions of dollars of funding into autism early intervention treatment, yet not follow it up by providing schools with appropriate training and staffing once early intervention is finished? In Vancouver many schools will not allow private autism therapists to work with in the school. Yet their staff is totally untrained in dealing with autism behaviour issues.
Matthew's school is a wonderful school with fantastic staff. The principal is proactive, the staff are involved and committed, and the support staff is ever steady, kind and supportive. However the staff is already stretched thin with only the bare minimum of special support workers. Very few of them are trained and experienced in behaviour management, let alone autism. Their role in the school is so vitally important, yet they are not trained.
Coincidentally a friend of mine told me of an incident that happened at her child's school in the same week. The autistic child in question has become violent toward other children. The first thought that popped into my head was that this child has been allowed to get away with extreme behaviour because the school staff does not understand that autistic children fully understand that they have gotten away with it. My second thought was how long will it be before I get a call from the school telling me that Matthew has done something harmful to himself or others? At the rate things are going, my guess is next school year, unless things change.

I would love to hear about your thoughts and experiences on this topic.

Therapy for therapy

So, recently my hubby and I signed up for a parent workshop with our autism services main man David Loyst. We should probably have done this workshop two years ago when we first signed on, but with Matthew's heart surgery, and having to move yet again, it was not the best time for us.
We finally decided it was time to do this workshop because Matthew is a different little boy then he was back then. Since his surgery, diet change and effective therapy, he is a new man with a new lease on life. His energy levels are way up, his language is up, and his happiness level is up. So why, you may ask, would be feel now we need a parenting workshop? Well, lets just say, we have difficulty directing Matthew's energy. He is restless and in constant need for attention. if he is not getting direct attention he is looking for a way to get it. It can be frustrating and distracting, to say the least. At first, when Matthew started to show his precocious nature,  we were relieved and excited! Finally, a little boy! It was like Gipetto with Pinoccio! Now we feel like we have Denis the Menis on our hands!
When we started with Loyst Inc, almost two years ago, Trisha, our most excellent team leader and behaviour consultant, instructed us to keep our language simple, and direct. Encouraging Matthew to look us in the eye and use language to have his needs met. We have yet to perfect this after two years, but we do try. I was a bit nervous about doing the workshop. I always get a little nervous when I know I am going to be 'on the spot' about how we do certain things and our parenting approach. I am a little insecure about my obvious lack of certain skills, that are required for 'home making'. I am not very organized, I am totally scatter brained, I easily get overwhelmed, I am very impatient, and I lack energy. I know all about myself and my short comings. I just don't need every one else knowing about all them and being subject to their opinions on it, like they are simple little habits to break.. I am also very insecure about my insecurity. I don't really like people knowing I feel insecure. But, I am always willing to give it a fair go if it means improving Matthew's situation. So I push down my fear and sign up. We are instructed to take video footage of us playing with Matthew one on one.
Well, after day one I am more overwhelmed then ever. Our video footage shows us having difficulty focusing Matthew, Matthew trying to get attention by whinging and rolling around on the floor, and  only really getting his attention with cause and effect games where language is at a minimum. Apparently we need to play with Matthew one on one, in a really energetic, animated fashion, with no distractions (i.e. Super Simon), focusing on eye contact and language. I am thinking, how are we possibly going to do this??

Reality check....
Here is what my morning consisted of...
600 wake up to hear children screaming to be let out of bed, after a typical night of several sleep disturbances courtesy of Super Simon. Children climb all over me while I try and pry my eyes open. Fall back to sleep after Paul takes children to eat breakfast.
630 Paul wakes me to take my shower. The only chance I will have for the rest of the day to take one, to look in the mirror, pee with the door closed, and pull on some clean clothes.
645 stumble to the kitchen only to find Paul on his hands and knees engaged in a heated argument involving milk, waffles, a dish rag, and who smeared snot on his work pants.
700 kiss Paul buy buy and cling to that one last moment of sanity I will have for the rest of the day.
701 swill down some cold tea and a GF waffle (I have not the energy to make myself something healthier that might aid in some weight loss efforts). I quickly check my email while Matthew is in another room. I he sees me on the computer he will want to get on it to watch BC Transit bus videos on Youtube and it will be hours before I can get him off.
702 shrieking and giggling. Must investigate. Children about the hurl themselves off new bunk bed. Stern words. Naughty corner for both.
704 matty giggling as he snorts out half a gallon of mucus and smears it all over himself.
705 Simon whinging and crying because Matthew is getting attention.
710 oops forgot to set the potty beeper! Silly me! set potty beeper for Matt.
711 realise I have to sort out the kids rooms, since erecting new bunk bed on weekend,  so the therapist can do her session with Matthew later. Despite a pile of dishes stacked up like the leaning tower of Pisa, baskets of laundry begging for some attention, and my unmade bed (I hate not making my bed), I set about condensing the mess in the boy's rooms to create a new toy room, where Simon used to sleep.
As I shift items from one room to another small children follow me shifting items from one room to another too. But of course, they are doing the opposite of what I am doing!
I turn around to find Matthew ripping a book. Naughty corner. Simon starts screaming that his train track is broken.
730 Fixing train track in a elaborate double decker kind of way, much to Simon's delight. I hear the familiar sound of toys loudly crashing down the stairs accompanied by the tell tale giggling. Matthew in naughty corner again. I am delighted that my head has not popped off yet.
735 get back to that tidy job.
745 really surprised that i have not been interrupted in 10 min. Check on children. Find Matt laying on the floor with pee stained pants. Off to the potty. Change pants while trying not to scold, be verbal, or give attention. A success! Buffy gets a treat for not reacting!
750 reset potty beeper. Children giggling and screaming. Hanging off the side of bunk bed. Naughty corner for both.
800 Still trying to sort out the rooms. Matty giggling. Find him riffling through cupboard for food and a box of fruit bars in hand. Pry fruit bars out of hand. Screaming and wailing. Threaten time out. Screaming and wailing stops. But giggling prevails as he snorts out another big goober. Wipe nose. Simon comes in crying and whinging, grabbing onto my leg, smearing my pants with goobers, he walks away content. I am a human Kleenex.
810 potty beeper goes off. Take Matty to potty. He has already peed his pants. Loose my head. Scold and threaten to remove all pants from the house until such time he can learn to not pee in them. Failure. Buffy loses treat. Shame for breaking potty training rule # 2.
820 finally get back to the organizing. Hear toys hitting the floor in a familiar, yet disturbing way, accompanied by giggles and shrieks. Find boys taking turns throwing Hot Wheels across the living room dangerously close to glass cabinet. At least they are taking turns! Naughty corner for both
830 realise that I have not peed since waking. Go to bathroom. Hear Matthew giggling (I can hear him because the door is open!), He is on my bed about to throw the contents of a cleaned folded basket of laundry on the floor. Because of my compromised position I can only use my voice to hopefully prevent the inevitable. I bellow out a threat of some sort hoping that I will not have to follow through. Apparently it worked. I just hope my downstairs neighbour does not call social services!

Somewhere in all of this I am supposed to find time to have one on one, play time with Matthew. I am thinking if my day continues on this path, it will not happen. All too often I have days like this.

Miraculously, somewhere around 10 am, all is quiet, all but the Thomas the Tank Engine cd chugging in the back ground. The boys are playing independently and quietly. Do I interrupt this reprieve to start a rouchous game, for Matthew's one on one play time? Or do I lay down on the sofa and pray for world peace? I choose prayer (ok, I was really praying 'please God, please God! 10 more minutes!). It does not last long. I hear Matthew's little feet tromping down the hall way. With his blanky in tow he slides in next to me and settles in for a cuddle. Two minutes later Simon stomps down the hall and the wind gets knocked out of me as he hurls himself on top of us. Matthew giggles in glee, and before you know it, we are all engaged in tickling, nose pinching, and scary dinosaur noises. I decide this is a good time for some directed play. I invent a game called 'blast off' (I am surprised at how easy it is to invent a game for toddlers). I get Simon jumping in my lap, count one two three BLASTOFF! as I throw him into the sofa. Simon easily gets the gist of the game, yelling out 'ONE, TWO, THREE, BLAST OFF! and AGIAN! AGAIN! AGAIN! with every turn.  With Matthew I have to work a little harder. I make him look at me rather then my hands, and make him say 'blast off' before throwing him into the sofa. For years I have been teaching my children to not jump on the sofa and now it is all undone!
But in this moment I realise that I can take what David is saying and modify it for almost any situation. If  I can't find a perfect moment, or create one, then I will just have to find an imperfect moment. I will have to take opportunities where I can find them. I also realise I need to give myself a break and not take an 'all or nothing' approach to things. After all most parents with typical children never have to think about how they play with their children.

Later in the day Sarah, the behaviour consultant is wrapping up her session for the day. She comments that Matthew's language was really up today. I notice later that Matthew is trying to get my attention in a different way. He is coming up close and looking into my eyes with a little grin on his face. After a little prompting from me he says 'blast off'. It may not seem like a big thing, but for a child who can rarely verbalize what he wants, this is pretty major. A small victory for the day! Now if only we can get this potty thing down. After 6 pairs of underpants in one day I am thinking I need to put a washing machine in the bathroom.

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.