How did we get here?

I get asked this question often. "What got you to look into Autism?" Well, i had others intervene thankfully. I had other people (qualified people) ask me a lot of questions and express some concerns. I wouldn't have known. I had no clue. I didn't know anything about Autism or what it looked like.

Marshall was a typical newborn... as far as i was concerned. He was a little more work and woke up more at night than his sister D (but she was close to perfect!). He took a while to sit on his own (but we had hardwood and no carpet), but he started crawling and then understood sitting along with it, at about 8 months. He never walked along furniture, or even in our hands much. I'd look over around 9 months and Marshall would just be standing in the middle of the room. From there he started to take steps and was fully walking at 10 months. There were no physical delays for him! He had a LOT of energy and just wanted to RUN all day... but he was a boy, our youngest and only son, and boys are crazy so it fit - right?!

Around a year Marshall did start to talk... kinda. The first thing he ever said was, "no" and he said it like, "no, no no" and he'd point his little finger. Lol. He really liked the glass doors on our tv unit and i was constantly doing exactly as he was now mimicking... "no, no, no". Shorty after he started to say, "sit down". My firm voice must be more present in his mind!! He has always, and still is, a big stander in the bathtub. We gave up on "sit down" a long time ago :) Most of the day Marshall would speak jibberish... a bunch of his own sounds and 'words'. His favourite for a long time was "ticka-ticka-ticka" and he would run around smiling and jumping and 'talking'.

He was really only saying these 2 phrases, but he was talking so that was good... right? Then around 16 months, his language had not expanded at all, and he wasn't even using the phrases anymore. Sometimes when he'd want me he'd attempt to climb up me and he used the 'm' sound so i thought maybe that was his version of 'mama'... but it was never consistant or clear.

Marshall has always been a really happy kid. He is full of smiles and loves to laugh. So... he wasn't talking... he's a boy, they take longer to talk. He'll talk when he wants to. I was convinced of that, and so were many others that i spoke to about it. Other than the lack of language, i didn't see anything that would lead me to think that something else was going on... of course, i didn't really know what i was looking for either.

I had to visit the Health Unit for Marshall's 18 month shots and i decided at that time, that i would casually bring up the no-talking thing. At this point, Marshall was not frustrated with the language barrier, and because he was pretty happy most of the time, it wasn't a struggle for us at this point. But hey, i want to be a 'responsible parent' so i'm just going to inquire. At the appointment, Marshall had one of the worst tantrums i'd seen from him. The nurse was incredibly rude giving me looks and actually asked me, "what's his problem? why is he yelling like that?" I wanted to say, "He doesn't like you", but instead i just looked at her blankly and said that he wants to stay with the toys and not be trapped in a small room... that was normal right? I went on, after M calmed down a bit, and asked the nurse about his speech, stating that he doesn't really say anything at this point, but that he kinda did a few months ago. She got very serious with me and said that i should take him in to see my family doctor right aways. I tried to inquire as to why, but she just kept saying that she couldn't say why but that i needed to bring him to the doctor. Ok, so now my mind is racing and i don't know what to think. Is something wrong with him? He seems so normal.. except the talking thing. What was that fricken nurse's problem! What a bitch. The nurse let me know that she'd pass on M's file to the Speech Therapist at the Health Unit.

I go home and make an appointment for Marshall to see our family doctor. He says that Marshall is still very young, but let's get it checked out. When i ask what it is we're looking for, he tells me that M's lack of speech may be related to Autism. Wow. This sucks - was my reaction, but of course, i was still hopeful that it was nothing. I got a referral to a pediatrition in Abbotsford (where we live). They have a cancellation and we get in 2 weeks later. This is now January of 2010 and Marshall is 19 months old. I take him in and after the Dr. sees Marshall for a while, he states that M is fine. He says that he has great eye contact, which a lack of is a big indicator. He says that Marshall is smart (he tried to move a chair to climb up and reach some stuff on a desk in the office). He said that Marshall is a good looking kid and has nothing physical that would indicate anything. He says that he would be concerned if Marshall had been saying a lot and then nothing, but that this had not been a regression (hmm... right word? like he didn't stop talking all of a sudden) as M was only saying 2 different things. He said that Marshall will talk in his own time and that i should not be concerned. This Dr. went on the say that, "I'm not supposed to say this, but i am 100% confident that Marshall does not have Autism." PHEW! What a relief. I let myself start to get worried and all along it was nothing. He'll talk when he wants to talk - perfect! The end.

I got a call from the Speech Therapist at the Health Unit and we set up an appointment in February for her to meet Marshall. During the meeting, she tried to play a few different activities with M and we had a bit of tantruming from him when she tried to get him to interact with her. I mentioned that Autism had been ruled out... and she gave me a questioning look. I told her that we had seen a pediatrition who had said that there was no chance that M had Autism. She looked quite surprised and she asked who we had seen. I told her the name of the pediatrition and she kinda made a face like she wasn't surprised. Then she said, "I'm sorry to tell you this, but i can't believe that he would've said that to you. Marshall is displaying quite a few red flags for Autism and i suggest you get a second opinion." Ahhhh.... ok? This is great. Just great. It is just awesome to have mixed opinions over something so serious. The Speech Therapist set me up with a 'go-to' person who would oversea any of the other therapies and what not that i might be interested in through the FVCDC.

Melissa, who we have just loved over the past year and a half, was our 'umbrella' person. She came to our home bi-weekly for playtime with Marshall and to answer my questions and offer other services to us. Melissa spent several months with us from March-May and her report of Marshall was similar to the Speech Therapists, that M was displaying several red flags and that we should definitely get another pediatritions opinion, as well as get a referral from our family doctor to have Marshall tested for Autism. It seemed pre-mature to get Marshall tested, but after finding out that it is a year long wait list, it just made sense to get him on the list and if we felt it wasn't neccessary a year from now when he'd get tested, it was easy enough to cancel. And of course, if it was neccessary to get tested, we'd have results around the age of 3 and with Autism, the sooner the diagnosis, the more help he can get before he enters school. So we got Marshall on the wait list for June 2010 at the Sunnyhill Autism Centre (based in Vancouver, but they have testing in Abbotsford as well).

We contacted a peditrition recommended by Melissa by the name of Dr. Deborah Hewes, who is here in Abbotsford. We had to wait until September for an appointment. Dr. Hewes met with Marshall and myself and she asked a lot of questions. At the end of the appointment, she stated that she was glad to hear that M was on the wait list for Autism testing already, but that she wasn't sure whether or not Marshall would be on the spectrum. She said that if he did have Autism, she was pretty confident he would be at the high functioning end of it. This was great news to hear really. The best of the worst... i'll take it :) I will add in that over the summer, Marshall recieved a 4 week block of Speech with Amy. M's speech was still fairly absent at this point. I believe he was saying, "more" and signing it, and a few other words such as "car" and "ball", he was also counting "two" when we started with "one". So this speech block was focused not so much on Marshall's language, but rather on getting him to ask with his eyes. Eye contact is a struggle for most kids with Autism. Marshall does have quite a bit of eye contact compared to other children, but at this point, he would want something and jump up and down crying and looking at the object, not at us to get it for him. Working with Amy and learning as a parent, how i can help Marshall improve his engagement and eye contact was so helpful... and we saw quick results in her methods which is always good! Melissa continued to spend time in our home with Marshall in the fall and over winter. We got an occupational therapist involved as well... but we found that some of the methods she wanted us to use with Marshall (such as deep pressure brushing), M resisted and would run away. We switched it up and used our hands to apply deep pressure as a calming method, mostly on his back and legs, and that helped a lot. We attended a playgroup set up by the Infant Development Program on Tuesday mornings. In the new year of 2011, Marshall had an 8 week block of Speech with Colleen (through FVCDC). We had some other family things come up and i postponed the block of speech in the middle of the block. In that break, Marshall started talking a lot more. He would say some words and was using some signing, but spring came and with it came a new Marshall who was trying to say any word we asked him to. He started labelling and pointing more and asking for things more!! Prior to this sudden progress, Marshall had been using words and signs, but then replacing them when we taught him something new. For example, M said "mo" for more and would sign it. Then we taught him please, "lease" as he'd say it, and he'd sign it but we never heard or saw 'more' anymore. I didn't really realize that he was replacing until he learned "apple", both for apple juice as well as for an apple... or so i thought. Suddenly he was pointing at everything he wanted and saying, "apple". Oh dear. I spent a lot of time running to the kitchen to grab an actual apple to try and show him what he was asking for!! But just few months ago, all of the words and signs that we had been teaching him and he'd been replacing, he started to use... ALL OF THEM, and at the appropriate times! It is wonderful and has been wonderful. Don't misunderstand me, we were excited that he was using about 5 or so words appropriately,but labelling a lot more than that! I'm not saying he just started to talk and got caught up by any means. But we were happy, and are still very hopeful as we see his language improve :) Colleen was so impressed, as was Melissa, with Marshall and his quick improvement during our 3 week or so break. One things we have been so thankful for since all of this started is constant progress! I got the call from Sunnyhill Autism Centre in March and we booked for Marshall's testing which we were able to do in Abbotsford in May. There were 4 appointments to follow: The first being a physical... which seemed kinda pointless actually. I drove out to Langley for this one and the Dr. basically weighed M, measured his height and his head, and asked me a few questions. I thought M would be tested on his reflexes and his physical skill. The second appointment was a 3 hour block where Marshall would see a psychologist (i could be in the room). The third appointment would be a 2 hour parent interview where there would also be a speech therapist, and the psychologist present and Marshall would be seen with me as well. And then the fourth appointment would be for my husband and I to hear the results. These appointments were spread about a month apart.

Marshall does call me "Mama". He just started using it the past couple of months. Usually he will use it if he's upset and wants me. It is nice to hear him address me by my own name! He has said "Daddy" before, but only when he imitates his sisters' greeting when Daddy walks in the door after work. Very recently, for the first time ever, Marshall used my name to get my attention to ask for something!! It was a big day for him (and for me)! I was in the kitchen and I heard "Mama", i looked over and several feet away stood Marshall who was waiting for me to look at him!! Our eyes met and he pointed to the slider door and said, "outside". I couldn't believe it!! It's amazing how with a normal developing child, you don't even consider something like this an accomplishment, at least i didn't. Marshall has used my name again in this same manner just the other day again. He was in the kitchen and he slightly stubbed his toe. He said, "ow" and i didn't come running over or even respond quickly, so M says, "Mama, ow!" as he grabs his foot! I came over to him and gave him what he was looking for, acknowledgement and comfort, and he was happy!! So this lengthy post catches you up to Marshall's recent diagnosis. I have shared this with many people who have asked and i am happy to have it all written down that i can just send the link!! As i've stated before, i am writing this blog for my own record, and to inform those around me who are curious and have questions, but if i happen to have followers of this blog who i don't know, but who have a child with Autism or who are on wait list, i hope that our journey can help. Feel free to ask any questions you might have. God decided to challenge our family with a special needs child, and i'm not going to hibernate (even though i want to most days) and feel all alone. I want to state also, that Austim has a huge spectrum and is not always easy to detect. There are a lot of symptoms/signs that kids with Autism do, that your 'normal' child will do. The thing with Autism is that it is all about the combination of 'things'. I have heard people get quite defensive when they ask and i tell them some of the things M (or other children with Autism) does that makes him Autistic, and i have got a lot of..."my son did that all the time and there's nothing wrong with him." My own husband would say all the time, "I did that when i was a kid" when i'd tell him something else that M does that i have learned is an autistic trait. I can't recall how many of the triats your child has to display before you should be concerned, but it's quite a few.

So this has been the past year and a half with our little guy and the journey so far! Thanks for walking along with me on it... and especially thanks to those who are walking beside me in it :)