Bath time

Water and Marshall has been a love/hate relationship since birth. As an infant, M seemed to enjoy being bathed, although he would try to sit up a lot... and he was only a week old when he started using his stomach muscles this way! Once Marshall was capable, we put him in the bathtub with one of those suction chairs and so he sat there with his sister D. He loved playing in the water and sucking on toys he'd dipped in there. He was all smiles and giggles... until we had to wash his hair. Both my kids came out with an abundance of dark hair that they never lost (except for the bald spot on the back), and Marshall's became curly, really curly, as it grew. It was super cute but washing it and rinsing the shampoo out took even longer than normal hair, and M was not a fan of this one bit.

Once M realized he could stand up and out of the suction chair, we couldn't keep him in there. He liked to sit but loved to stand. He loved to dip cups in the water and then tip them and watch the water fall before his eyes and sometimes onto his other hand. Watching water and being fascinated with it's movement is something many children with Autism enjoy. From the time M was 1 year to about 2.5 years old, he really liked bath time. He would get excited to get undressed and would love to sit in the bath as the water came out of the tap and splashed on his feet and hands. Marshall and D would play in the tub together for an hour, easy. I would empty the tub and refill as the water got cold. M loved everything about the bath... until it was time to wash. He would cry and get upset and try to knock our hands away from his head. I would just try to do it FAST and get it over with... which meant more water in his eyes which made him even madder. But it would get done quickly and he could breathe again... i could breathe again.

Around 2.5 years old, Marshall started to become... anxious about bath time. I don't know a better word to describe it besides anxious. He started to run away when i'd sing the 'warning song'... "Splish-splash I was takin' a bath!" He would hide in the house. I'd lure him into the bathroom, but he'd only stand so close to the tub and if i tugged him closer, he'd panic and sit down and try to get out of the room. Unfortunitely for Marshall, and for me for that matter, bathing is not optional.

Bathing started to look like this: Chasing a screaming Marshall throughout the house and having to fight him to strip him of his clothes and diaper. Picking him up while he kicks and screams and cries and bringing him into the bathroom where I'd just put him in the bath. He would NOT sit down and he would not calm down. None of the regular bathtub toys would interest him. I tried to bath with him in hopes that switching it up could be fun for him - not so much. I could sometimes stop the screaming by doing one of M's favourite activities....blowing bubbles for a few minutes, but he would not sit down and i could not wash him properly. It was a LOT of work, really intense, and i came away with a sore back every time.

Then it got worse. Marshall would sense that it was near bath time and would start doing his panicky cry and would dive into his crib in hopes that i would just let him sleep and skip his bath... and sometimes i did just that. We had to be careful that we didn't mention the word bath or even read it in a book as that would trigger M. Typically the kids have baths every other day. I would gather pajamas together and Marshall would see me and although it wasn't even a bath night, he'd freak out and run screaming to his room and hide in his bed under his blanket. I'd shout out, "NO bath Marshall, NO bath, it's ok", but he wouldn't calm down. Getting M into the bath on bath nights was still a big fight and i'd have to place him in there screaming still, but then this past spring, he started to try and climb back out of the bath... the SECOND i put him in there. We were strickly on a 'wash when desperately needed' basis at this point, so it was about once every 5 days or so and thankfully, our weather is cooler and he is not sweating all day long. So i would again, just try to do it fast. It was terrible. Marshall is strong... really strong when he wants to be. I'm no wimp or anything, but i'm not a weight lifter either, and bathing M was becoming extremely difficult. M's Dad comes home from work around 7:30pm and ideally, i'd have the kids out of the bath before he came home so he could spend some time with them before they went to bed at 8pm. But then I noticed one day that Marshall's one arm had strange bruising on it, and it dawned on me that I must have done that to him in the bath.

Just picture M and i right now... he is fighting for his life to get out of that bathtub and i am trying to wash him as fast as i possibly can. Because he won't sit anymore, i have to try and really clean his special parts as best i can, as well as his body and his hair. He is climbing the ledge of the tub, risking slipping and cracking his head. He is screaming... and we are in a bathroom where everything echos. D is in the bath with her ears plugged and turned to the wall as M kicks water all over the place. D is upset as her eyes can't stay open so she is crying. I am getting soaked as I use all of my strength to try and keep M from falling and washing him with my other hand while i repeatedly say, "It's ok Marshall, it's ok". And Marshall is red-faced, screaming, snot running out of his nose, and he is spitting and slapping his mouth, trying to climb out, jumping as he screams at the top of his lungs while i wash his hair, and at the same time, he is also trying to bury his head into my shoulder and he is saying "up" and "all done" when he has a breath that isn't all screams. It was exhausting.... for all of us... and those within earshot were exhausted as well. Something had to change.

First thing i changed was that D and Marshall would have seperate baths. The hope of them playing together again in there seemed to be a world away. Secondly, I would wait until Daddy was home from work as it really became a two person job. Daddy would allow for M to hug him as i tried to wash him. Daddy would get very soapy and wet as M buried himself into his shoulder. Daddy would rub his back and the screaming seemed to not be escalading as badly, and together my husband and i just had more control. It still was quite unpleasant and exhausting though as it was strickly a wash all over and get out experience.

FVCDC got a new OT (occupational therapist) and Melissa asked me if i'd like her to come by and meet Marshall and myself. Perhaps she had some ideas of how to make bathing easier and maybe even enjoyable for Marshall again. The OT could also give more advice on potty training which is still an obstical that needs to be overcome, but that is for another post, another day. So Carol came over with Melissa and i explained to her what has been happening pre-bath and during bath time. She had a few suggestions such as using a cloth to slowly get M's head wet without him really realizing it and triggering the big screaming. That didn't work. She suggested giving his head a deep pressure massage prior to washing him... he was not impressed with that one, although i thought it might work as he does enjoy us casually rubbing his head throughout the day. She suggested using a watering can rather than a yogurt container (my current water-dumper)... nope, he was having none of it. I told Carol how when i show him the bath toys or allow for some of his non-bath toys to come in there in an attempt to get him to play, he gets mad and throws them out of the tub. She suggested that i get some 'bath only' toys that never come out, ones that he'd really enjoy and that might be hard to leave behind, but that he'd be excited about playing with in the tub next time i showed it to him. Also, Carol suggested that along with the special bath-only toys, i get Marshall a reward for after bath time. Ok, so i made up my mind to put these last 2 suggestions together and to have a go at it.

So i was on a mission to find that 'perfect toy'. I really was just trying to find one that i knew would interest him. I'd thought about those windy toys that swim around as they unwind, and i had my mind set on that being the toy. Then i found one down in the States! A turtle, with a baby turtle on the top that you twist to wind up, then the arms flap in circles and it swims around in the water!! At the same store in the dollar section, i found bath books that were Toy Story, M's favourite! So i bought 3 of those books, one from each movie, and i thought that if the turtle didn't work, i'd try one of the books.

Then the big day came... experiment time! Lol. It sounds dumb but i was nervous about this!! At this point, i am kinda outta ideas so if this doesn't go over well, what the heck am i gunna do? Marshall's oldest sister B had soccer that evening and Daddy came home early. So my husband took both of the girls to soccer and M and i had a quite, calm house which was just what we needed. Marshall was watching a cartoon as i ran the bath water... which i assume he thought was for me as he didn't go into panic mode. Then i got everything ready and close by and then i prayed, "God help me! Please let this time be different, please help his interest in this new toy and book allow for some kind of normal, stress free bath, please!"

I went into the livingroom and turned down the tv. I said to Marshall, "Come! Look! Come and see, Marshall!" all very excitedly. He followed me into the bathroom where he stood at the doorway as i approached the tub. "Look buddy!", i said to him again, pointing. A bit more coaxing and he came over to the edge of the tub and saw the turtle floating in there. He looked at me and was intrigued! So far so good. I picked up the turtle and wound it and placed it back in the bath. Marshall was excited! "Turtle!", i said. "Turle!", M replied. And then he grabbed his shorts and tried to pull them off... HE WANTED TO GET INTO THE BATH!!! Whaaaa??!! Awesome. So i'm praising M and getting all excited, "Yeah! Bath! Turtle!" Marshall said, "up" once he was naked and i placed him into the bath.... calmly, with no kicking, in peace. He bent down to grab the turtle and then showed it to me. I said to him, "Turtle... ohh la la! You sit down, ok?" And he SAT DOWN. Now i'm excited! I can't believe he is having a normal bath after so many train wrecks. I sat on the edge of the toilet and helped him wind up the turtle and we watched it swim... it was a really great time of one on one interaction in a place where i didn't think i'd ever find it again. It was a blessing. Marshall played in the bath for 25 whole minutes! He was so interested in the toy, he didn't mind that i washed his body while he played. He did lose interest in the turtle for a period of time so i brought out the Toy Story book. He didn't understand why i had a book in the bath so i tried to show him it was ok and i pushed it into the water... he freaked out! Ahh!!.... ok, so this was not a good idea. I quickly picked it up and he was desperately trying to wipe the drops off of it so i grabbed a towel and helped him and he got distracted by the turtle as i did this. I decided in that moment that i would use the book as the after bath reward, so i hid it temporarily.

Then i used a cloth and tried to wet his head for washing while he played, but he was onto me quick. He stood up and started crying and i kept telling him it was ok. I put soap in his hair and then i decided to stop before rinsing (which is usually the worst screaming part) and try to get him to calm down and get his attention back to the turtle. It worked. We played for a few more minutes and then i started to rinse with the wet cloth. I tried to get him to sit but he stood up and cried again ... but he didn't scream, at least not like he had been for the past 6 months. And because i broke up the washing from the rinsing and he had time to calm down, part two was much quicker and M's anger didn't escalade. Seems so simple and makes so much sense now! After washing was done, Marshall wanted "up" (out), but i thought it would be nice if i could take him out of his bath happy. Having him on the couch wiping his tears and trying to catch his breath is a routine i wanted to break. Because everything had gone so well, i did try to lure him back to the turtle... and IT WORKED! We played together for a few more minutes and then I said "all done bath" and M concured happily with, "ahh dah"(all done) and out we came... ALL SMILES! I handed him his Toy Story book... more smiles :) He sat on the couch so content just reading his special book. It was glorious. I sat down with him and we shared that peaceful moment together... along with many extra kisses of "good boy" praise :)

It has been almost a month since that successful day, and i am happy to report that we are still having many good experiences in the bathtub! Marshall still has his off days where he doesn't even want to get in, or days when the turtle doesn't seem to interest him, but MOST days he is happy to bathe... so much that we are back to every other day with him which is wonderful. It's been a challenge and a true test of my patience! But for now anyways, we will call this a success story :)

Nana and Grandpa's Yard

My parents live on 5 acres of bush. They have several ponds and pathways that my parent's have beautifully landscaped throughout the property. We go to 'Nana and Grandpa's' house for dinner weekly, but are usually indoors. My parent's host a lot of extended family gatherings and if the weather is good, we are outside. Being outside with 5 acres of freedom has often been a BIG challenge for us with Marshall. He LOVES being near the water. Throwing rocks into the ponds is one of M's greatest joys.

In the past, as i was all day yesterday, i was worried. Worried that i'd have to say 'no' too many times which would trigger screaming, uncontrollable screaming, in front of an audience of family. It has happened many times. There have been many hard outside days at my parents'. BUT...yesterday we celebrated with my Opa for Father's Day and Marshall did... AWESOME! We headed across the line just after lunch and Marshall took about an hour nap in the car on our way back to Canada, and to my parents' place. Marshall's after-nap behaviour can go either way, especially when it is just a shorter car nap.

M tried to run over to the ponds when we first took him out of the van, but we brought him inside to get his mind off of that idea and it worked. As everyone came, the party moved outside. Marshall did try to run over to the main pond and i had to run after him, tell him "no water" which got him yelling and laying on the soggy moss. But i got him up and held his hand as we walked to the backyard and away from the pond. He was mad and was crying/yelling. But i told him again, "no" and "all done water" and miraculously, he joined his cousins and played in the backyard THE REST OF THE EVENING!!!

He was SO HAPPY and super giddy. He would come into the middle of the gathered circle of people and he was just being a total show-off! This is not the first we have seen of him enjoying being the center of attention, but it was definitely the first time this group of family got to see it.

It was so amazing to actually be able to sit back, relax, and enjoy the company around me... and to watch my son interact with everyone! My parents even made a fire after dinner to roast marshmellows (and to rid ourselves of the lurking mosquitos). Marshall, who doesn't always understand the dangers of heat, stayed his distance. He sat with Grandpa who he calls "Papa" and together they roasted a marshmellow... M's first doing that and he even ate it after! All day i have been continually reflecting on the entire family gathering and how wonderful it was to see Marshall just being a typical kid. Running, playing, laughing, engaging. I must take note of these amazing moments as they help to get me through the less than amazing ones :) A good day.

Next Step Autism Program

Today I met with Janel from the Next Step Autism Program. We are going to try out this program and see where it takes us. It sounds like they have solid therapists and they work cohesively together.

Janel will see Marshall in July for an assessment where she will try different skills with him until he fails every catergory. This will give her a very good idea of where M's skill levels are at and where the most work is needed at this time. The other therapists will meet with Marshall too and they will each create their own list for him. Then I as his parent will have a say as to which areas i'd like them to focus on more at this time and each month we update the file and review it. The speech therapist, Colleen, M has been seeing so it will be nice for Marshall to have one familiar face in a new environment... although the interventionalist will be who Marshall sees daily.

Janel told me about her backround in the ABA therapy and how she feels strongly about it. Now, this is the one thing that i am a little concerned about. I have heard many negative things about therapists working with kids in such a strict, sitting at a table, manner.

Janel stated that kids will need to learn to sit at a desk once their in school. She also said that this type of therapy has come a long way over the years and that the negativity that is out there is mostly based on the way they did things in the past. She said that if ABA therapy is not working for M, that they are open to doing whatever therapy is needed in order to see progress. They are open to adapt and to change if needed. So, i am happy to hear that. Marshall will be able to start with this program the second week of August. It will be 5 days a week for 2 hours each day. They are in a classroom with 3 other children and their aids.

It will be interesting to see how he does and i just PRAY that he will like it there. Leaving him screaming at the door with a stranger and a closed door will be very hard... so i hope it's not like that. Janel said they are open to having parents sit in and observe, but only after the child has adjusted so about a month in. It is scary.

BUT...

I have heard good things about Next Step from a parent friend of mine whose son has been in the program for about 3 months now, and also from a few other qualified people who work with children with Autism and their families.

There is no contract with Next Step, so if things aren't going well it is nice to know that taking Marshall out of their program is not a complicated matter. We shall see how things go! It's kind of nice to have July off to relax as this program is year-round so once we start, we're much more limited with our time.

Ministry of Children and Family Development

Margaret from the Ministry came by my home today to discuss what is available to Marshallas far as services go, and the funding that is available to pay for the therapies. Dan and I had already had some input from Dr. Brown as far as where to use the funding, but Margaret was helpful is letting us know how the invoicing works and what not. She was really nice and seemed sincere. She just loved our home... stating that the outside (the front) does not speak well for what the inside looks like, which is true :) She also, as most people do, fell in love with our backyard. It is a simple town lot which is a little larger than standards now for building, but it is square, fenced, and flat. We have done quite a lot of landscaping and have a large play area,a trampoline, and last fall Dan built a large shed that stores a lot of our stuff, but also has a sofa and tv so the kids can watch movies and what not in there. We have a decent sized patio for the kids to ride their trikes on as well. It really is a great space for kids, the reason we bought our tiny house, and it works out that with M's special needs, this environment at our own home is a big benefit!

Our home is small, just 1200 sq.ft, so having the shed as 'inside space' is great! Margaret agreed with me that Marshall being in the First Step Program through FVCDC would best suite our family at this time. She let me know that i'd be getting a large package of paperwork in the mail that i needed to fill out to get the funding set up for M. From now until Marshall is 6 years old, the funding for therapies is set at $22,000 per year and then once he's 6 it goes down to $6000 per year. The First Step Program will take the entire amount of funding for the year. The other option that parent's have is to hire their own therapists (speech, behavioural, occupational) and then have seperate visits with their child either in your home (you'd need a 'therapy room') or at another location. You'd have to pay into that therapists EI and vacay pay (etc.), and then also, you'd pay for all of the therapists to meet together frequently and hope that they can come to a consensus on Marshall's needs and then write regular reports on him. Due to the busyness that is our lives at this time, to hire seperate therapists with different agendas just seems like too much to figure out. So I will be meeting with Janel from First Step later on this week to hear more about their program and hope that it is a good fit for our son.

Big Boy Bed!

Since he was 1 years old, Marshall has slept through the night. He used to play and chatter in his crib for a while, content, until he was tired, and then he'd go to sleep. He never woke up at night for a bottle or fussed at all. He'd sleep a solid 12 hours every night. In the morning, he'd wake up and he wouldn't whine. I kept some books and a few simple toys in the crib, and he would just play and read fairly quietly until i dragged my butt of bed to take him out.

We have thought about moving him into a real bed a lot over the past 2 years, but why change a good thing? He did start to climb out of his bed around 2 years old, but we told him no and for whatever reason, he listened and didn't try to climb out anymore. The past year or so, Marshall has taken to having many things in his bed. He will try to lift anything into it that he possibly can... on top of all of the things that he requires to STAY in his bed in his own special order. I gave him a pillow about six months ago as well to start to get him used to sleeping in proper form as some day, he would be sleeping in a real bed. His crib looked ridiculous. lol. He would hardly ever sleep with the pillow, and with all of this other toys and books in there, he barely had any room to sleep! Also, due to a phase he went through where bum-drops were a big hit, the plastic on the mattress was all broken so he was kinda sleeping in a hole... as if he was on a trampoline would be a better description! lol.

I was scared to move him into a real bed. You just never know with Marshall how changing things up will affect him. But then he started to climb out of his crib again... a lot. His rib cage was getting all bruised up from sliding down the rails, as well as his one leg. It was time. I didn't want to wait until he really hurt himself. My husband suggested we just take off the rail on the crib as an adjusting period, but i felt like that might be more confusing and he'd be upset. I really felt like a 'clean break' would be best and we would just deal with whatever came from that.

So yesterday i had my Mom watch the kiddies and my husband and I took apart the crib. Marshall and D share a room and currently, there was a set of bunkbeds and then the crib all in a pretty small space (2 dressers as well). ALL of the kids' toys have been living in our livingroom for years. So we bought a nice large area rug, took apart the crib, put up a safety guard on the top bunk for D, and moved all of the toys into the space where the crib was. It was great to create a play space with normal sleeping quarters! Then we went to pick up the kids.

Marshall seemed happy with the bedroom! I bought him a Toy Story pillow case and got his bottom bunk bed all set up with his things, and of course his favourite blanket. Then we started to get ready for bed. All day i was envisioning Super Nanny's methods of getting kids to stay and sleep in their beds. I figured it may very well be a long night and i was ready for it. D picked out a book and i tried to get both kids on M's bed so we could read. Marshall stood in the middle of the room facing the toys where his crib used to be. lol. He looked so confused and i guess it just dawned on him that his crib wasn't there anymore!

I showed M his new pillow and told him "bed, sleep" as i padded the bed. Then he climbed in and we read a book... well, he explored his bed while i read with D. I put away the book, D climbed to the top bunk, i turned off the lights, and said prayers and sang to both of them... all our usual bedtime routine. Then i left the room... and waited. Marshall talked for a bit... HE NEVER CAME OUT!! Even with all of the toys right across the room from him now. I was in shock... i'm still in shock! HE FELL ASLEEP.... and slept through the night. In the morning, he didn't come out of his bed until i came into the room. I didn't even have to establish rules at all for coming out of his bed! Crazy. This was too easy... I am not complaining - i'll take it!!!! God knows we have so many other daily challenges with Marshall, and i am just happy that sleeping and the adjustment of a new bed is not one of them!

D's Preschool Finale Party

Marshall has 2 older sisters. B is 12 years old and is his half sister who spends time in our home every 2 weeks for a 5 day stretch. My husband and i have 2 kids together. D is 4, about to be 5 in fall and then there's Marshall who just turned 3.

Today D had her last day of preschool and they had the finale in the park and siblings were invited. My sister and her daughters would be there, so when my Mom offered to come along and help, i declined. I wanted to say yes, but i was having one of my 'I am strong and can handle it' kind of days and I wanted to prove to myself that i could do it. I wanted to prove to myself that Marshall would be manageable in a new setting, an open space, with many spectators. Well, looking back on the day, declining my Mother's help was a BIG mistake!

The first while the kids just had free play in the playground which was great for me as that's where Marshall wanted to be playing. I really have to watch him closely though as he really has no sense of danger and will run right into the nearby parking lot without blinking. D was playing with her cousins so that allowed for my attention to be on M.

Then the teachers called over all of the kids to come and play some games in the field. This was when things got... stressful. I was hopeful that Marshall would come and join in, even if it was in his own way. The teachers are great and they know M already so i knew if he was acting out a bit, they'd understand. Well, i tried to lure Marshall away from the playground but he wasn't having any of it.

I could barely see the kids in the field and i was upset as i was really missing everthing that D was doing. This day was supposed to be about her, and having fun with her and here i was, with Marshall. Guilt set in. My sister has said to me often that i am really so blessed to have a child like D, when i have a child like Marshall. My sister is right. D is so easy going and just wants to have fun with those around her. She never once looked over or got upset that i wasn't there at the finish line, or that my presence in that area wasn't available. I knew my sis was taking photos so for that i was very thankful, and i am happy to look at these photos at the end of the day with D and to experience and re-live the excitement and fun that i just wasn't able to enjoy with her in the moment. D holds no grudges. She understands... without really understanding at all. I believe she is God's special gift to us.

I mentioned to my mother in law this topic of having D as Marshall's sister and how blessed i feel to have this 'match made'. I shared with her just how upset i felt that i couldn't take part in her day, but how content and happy D was anyways. My mil said to me, "D is so secure in your love, that's why." That really touched me... and i hope that it's true for D, and that she will always know that she is loved unconditionally, regardless of my actual presence. I'm sure there will be many more days where the focus will have to shift to M, and for now, i am just so happy that D is ok with that.

The parachute. My new enemy. Lol. Marshall loves the parachute, but he doesn't understand it. He wants to climb on top of it (which he did), and under it (which he did at the wrong times). M did come over to the field where the kids were at near the end of the party, but he wanted to do what HE wanted to do, and I become very lost when his temper flares up like it did and he won't let down. I had to keep telling him "no". Marshall was MAD. I was trying to show M how to play with the parachute... like how ALL the other kids were doing it, properly. He had his own agenda. And when Marshall doesn't get what he wants.. he gets mad. Mad for M right now looks like screaming.... a LOT.... and LOUDLY... at the top of his lungs. I had an audience of preschool parents this day, which makes everything harder. I think that perhaps it felt harder because of the actual diagnosis. I was flashing forward to how this behaviour and our challenges aren't just going to go away, but are a reality and will take work and time now. I felt like the worst parent in the world with all those eyes on me, not being able to have any control over my child. I wanted to yell at those parents... with their judging eyes and sideways looks at eachother. I wanted to shout, "Stop f*$%ing judging me and my son because i'm doing the best that i know how, and his best right now is lost somewhere in a major lack of communication and understanding. I'm struggling right now. Support me!!" But of course, i didn't. It was a hard day. I held back the tears at the park... as i often do in public when i feel them coming on. There have been a lot of hard days lately, and they seem to be coming more and more frequently.

But.... i KNOW that M will get better. I KNOW that he will learn. I KNOW that communication will improve. I have to have HOPE and FAITH in a future that looks bright. I just have to.

So there you have it. A party that was anything but that for me. My life, our life as a family, revolves around Marshall right now. We will celebrate the good moments as those outweigh the not so good moments. HE knows that this is gunna make me STRONGER (Mendisa). I love my kids for who they are. Unconditionally. Just as Christ loves me.

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 :)

Why Blog about it?

I enjoy journaling. It is very therapeutic to write down my thoughts and stresses. It is as if putting them down on paper releases them from me. All through highschool and even into adulthood, i've kept personal journals (on paper). Since having kids, sleep has taken over priority of journaling many nights, and i find that i miss 'getting it out'... venting.

I also do not have a good memory. My brain is very selective in what it chooses to retain. I have loved that i can sit down with my old journals and read through them and just remember. Be brought back to that place in time, to where my heart was and then to skip forward and to see where i ended up, how God got me through it, to see how it shaped me and moulded me to be the person i am today. I have been keeping a private family blog since 2008 and have really loved keeping it up to date with pictures and allowing others to follow us in our journey. I would love to scrapbook, but the time and space is just not available anymore. Three kids, a husband, and a home is a LOT of work to maintain! My blog is my scrapbook... and i review it from time to time and find joy in that.

One great thing that i have loved about the fact that i've blogged (journalled), is that i have been able to read over the past year and a half to see the progress, in more detail than i can recall by memory, of our son Marshall. I love looking back now and really seeing how far he has come! I have thought often that i should be writing down all of the little things, both good and bad, that happen in each day.. more so for myself than anything. So now that Marshall is diagnosed, i have felt like it is important that i really start recording (daily if i can) the challenges, the struggles, the progress, and the accomplishments.... ALL of it.

I want to do this for my own record. But then i thought, maybe Marshall's story and my journey with him can help someone else? I know that my sister has stated that she is often approached by people (mostly from our church) that ask, "How's Marshall doing? How's Sonja doing?" My sis has stated that others have shared that they don't want to upset me or say the wrong thing. Well, i'm an open book... especially on paper ;) I am not a perfect parent... not even close! But i love my kids with the love that the Lord God has shown to me... unconditional. It is going to be a journey with ups and downs, it already has been. So i figure, why not put myself out there? Be vulnerable sometimes? Allow people to follow on this adventure that God has decided I am strong enough to handle.... and i feel that this is part of His plan, to start this blog, this blog about Faith, Hope, Love and Autism.

Jeremiah 29:11-13 "For I know the plans i have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."

Diagnosis

My husband and I saw the Autism testing team through Sunnyhill Autism Centre today and they have confirmed that Marshall, does in fact have Autism. PDD-NOS which stands for: Pervasive Development Disorder -not otherwise stated. He is thankfully on the high-functioning end of the spectrum.

It is not a surprise to us, but of course, we were hopeful that a label wouldn't be given... every parent wants to hear that their child is 'normal'. The big benefit of the 'label' for M of course, is that now he qualifies for government funding for therapy... which he needs.

Dr. Corinna Brown gave us the official diagnosis and she suggested strongly that Marshall get as much speech as possible as he is at a 1 year old level (he just turned 3) and that we get therapy for him to work on his social engagement. We have high hopes for Marshall, that his skills will develop and that because of the young diagnosis and intervention that will come, he has every chance at living a full life, depsite the challenges he will face. And above all, not only is he our son, but he is a child of God and we trust that His plan for M's life is greater than anything we can imagine!