Goodbye Blog

Hello to anyone who reads this blog. I will be shutting down my blog. I will from now on only give my blog info to very very specific people. If you want the blog address, you will have to email me or contact me. Sorry for anyone who enjoyed reading this.Thank you to the person who failed to contact me in person to see how my kids were doing. You know who you are. Congratulations, now you will not get your "inside scoop" on Reilly and be lazy enough not to call. Your welcome.

I felt like I won the lottery.

To say this has been a journey is an understatement. It's been filled with fear, sadness, joy, celebration, anxiety, and worry. As much as I've tried to fight it, it's our life. I live, breath and speak it. I may annoy people with my constant chatter of Reilly, but in reality, it's the only thing I know. It's never intentional. I really wish I could place my friends in my shoes for a day.  I couldn't begin to describe the battles we go through on a daily basis to fight for Reilly's well being. Any other Mom with a child with Autism will understand this. 


For example, Reilly is given a certain amount of money from the government each year to help fund his therapy, materials etc. We are eternally grateful for this. With this gift comes great responsibility. Constant phone calls to allocate certain amounts of money to certain therapists and companies. Long, tedious paperwork that needs to be faxed, mailed and filled out. It requires much patience and time. You have to ensure as his parents that the money given to you is used appropriately. It's as if they give you the money, theoretically, and say "ok here you go". You try your best to use this significant amount of money each month wisely. How do you begin to know where to spend this money the best? Every therapist or company you encounter relies on you to allocate them how much ever you wish. And you have to ensure the right paper work to go with that and that they use it correctly.  But I do feel very appreciative to live in such a place where this exists. Not every one is as fortunate as we are. For that I am very thankful. Just trying to show to everyone how much time consuming it is. 


I've had my moments on this roller coaster ride. I feel appreciative and thankful some days. Others, I wake up hateful I have to handle this much work and responsibility for one person. The therapy, the people, the paper work, the appointments etc. It feels ongoing and never ending.  I had a day like today when the long journey we've been on so far has made it all worth it. First I should back track the story before I share the exciting part. Back when Reilly was first diagnosed  Autistic almost a year ago he only had a handful of words he could say consistently at 2 1/2 years old. He couldn't point to things in pictures. If you showed him a real cow on a farm and one in a picture he wasn't able to connect them together. He had no attention span and no eye contact to say the least. Fast forward to today. He's now been in consistent daily therapy 5 days a week 2-3 hours a day at our home for the past 5 months. His therapist has been working on the alphabet with him lately. Recently, I caught him singing it by himself at the breakfast table. No prompting or help. Which has been the case all along. I'd have to prompt the first few or all letters to get him to say them with me. I was happy as could be. Wait, it gets better. I bought some flash cards the other day for the therapist to use with Reilly to help him be able to recognize the alphabet on a card. She's been working on this on a puzzle for a short amount of time. She was using the cards for an hour or so today. I came in to give Reilly a snack. I just casually showed a few cards to Reilly. I held up one and said "Reilly what letter is this?" ( which it was the letter Z)..He quickly responds " Z". I am almost in tears writing this. He began to say at least 10 more random letters I kept showing him. Wow. He really is such an intelligent little boy that some don't give him credit for. He really does hear me in there. He may not always show it or say it. But it's there! After this I felt like I just won the lottery!! Such a huge accomplishment for a boy who could barely say 2 words together a year ago. He can talk in sentences now. Almost fully understandable when he talks to you. He walks around constantly now and says " thanks mom". " thanks dad" and hugs us. Thank you to my wonderful son, who has seen our struggles first hand and can't stop thanking us for everything we do for him now. 


Some days are easier than others. But when I hold him, rock him and put him to bed. I sit and watch him. How incredibly strong he is. He's been through so much and keeps going. I feel beyond proud of how far he pushes himself each day. Never in a million years could I imagine Reilly coming this far a year ago. I am so lucky to have such an amazing little boy in my life. 

Picture this. You set sail to go to a wonderful exotic location. All your friends talk about this place. How warm the weather is. How wonderful the people are. You end up on a foreign island. The wrong one. This wasn't the one my friend's all talked about. You desperately try to find your way back to where you wanted to go. Only to realize your stuck. Forever. Alone. You didn't get a chance to research the place you were going. Who lives here? What is the weather like? What language do they speak? This is how I look at my life with Reilly. All my friends ( for the most part) have "typical" developing children. You read the books, did the research. After all, all your friends and even strangers have raised "typical" developing children. So you can base on what to do from their experience. We were thrown into this blind. For a long time we just "winged" it. We didn't have any friends with what we were going through.I didn't want to be where we were sent.

This is the place where we were sent. At first the people are welcoming. They are wonderful. All of a sudden one day they retaliate against you. They don't like you. In fact, they don't even remember your name anymore. Even though you've known them for years. Just when you think the local people hate you, they begin to like you again. Your not sure if you can get used to that behaviour. You start to realize everything you do sets these people off. The sounds, what you feed them etc. No one taught you what the language was or the history of the people. Or even what weather to expect. You are starting to hate living here but you can't find a way out. You have to get used to it. Just when you think you cannot stand it anymore, you see a beautiful flower emerge. From now on you keep searching for those flowers all over the island. Some days you find none, and some days you find a whole patch.

Most people only see this island from afar, through a telescope. Which has a narrow point of view. The people that see where you live have an opinion on what they think the island looks like but they have no idea the things you have been through living in this unknown, unpredicatable island on your own.

More than meets the eye

It's been a while since I have written last.  Part of me didn't want to write anymore because I didn't feel like anyone understood what is happening. Who reads this anyway? To be honest I have been feeling down. Don't worry, you haven't noticed. I put on a good front. Or maybe it's portrayed as how we handle Reilly and his situation as just natural and don't make it seem hard. True, we haven't known Reilly any other way than he is now. But that doesn't mean it's not the hardest thing to go through each day. Sure, I may be complaining, but I believe I have every right to finally announce to the world how much my situation sucks.

Instead of getting to know my friends, I get to know the therapists and doctors. My "playdates" consists of the therapist coming over for intervention. Day trips, coffee with friends and groups with other children don't exist in my vocabulary. Our life consists of medical procedures, doctors, therapy, implementing new schedules or activities for Reilly, and the daily behaviour issues Reilly has.

To be honest, everyone only sees a small percentage of Reilly. I do enjoy hearing how Reilly is doing well but don't be fooled that his how he is all day. It makes it seem the things I go through is trivial when people only point out the good things he is doing and don't support me through the tough times.  He is becoming more confident in who he is and what he wants. This turns into more erratic behaviour. If he cannot get what he wants then it's a physical fight. He kicks and thrashes his body. Meanwhile, screaming at us to stop. He may only be 30 pounds but he defeats my 120 easily. It takes us almost 15 minutes to brush his teeth everyday because we have to hold him down by his arms and legs. Sounds mean but we have to brush his teeth otherwise he'd have more teeth problems then he already does. On top of the ton of other medical problems we go through all the time.

Speaking of that, I haven't shared with any of my friends that last year when Reilly was hospitalized for his low B12 problems he was tested for cancer, tumours in his brain and blood pooling behind his stomach, and liver problems. This is something that still bothers me and I can't get past it. It's hard to be strong when their is 5-6 doctors trying to treat your child and scratching their heads and the cause of his problems.

I wish my friends could live my life for one day. Maybe they would say hello more often, ask me if I want to get out for a bit away from my kids.

Please don't try to compare Reilly to other children in similar situations to try to make me feel better, or tell me  that life will get better. I don't believe in my heart that Reilly has a mild case of Autism. Neither does his doctor. Just because it may seem one particular way to others, it's not always the whole truth. He will suffer from Autism his whole life. It will be a battle for him forever.

I hope one day he won't rely on me to be self sufficient with everything. When you see him dressed, fed and smiling. Look behind him. It's been us. It took us half the morning with chaos to get him in those clothes, to fight him to even eat at the dinner table. That smile on his face is because he knows no different. He knows that we keep fighting for him and make sure he has the best opportunities.

One of the best days I had was a week ago when I picked Reilly up from preschool and he ran to me and said " Mommy, there you are. I missed you". He's never said that to me before. We proceeded to head to the car as it was raining outside. Reilly looked up, held out his hand and said, "it's raining". He's never been aware of his surroundings before, like the weather or people etc. So that was a huge step for him. He just recently started to learn what emotions and colors are. This is the stuff that makes the struggles worth it.

God's Gift

I wanted to share with everyone my amazing day yesterday. First, I'll back track a bit. We were originally supposed to go to Reilly's gastro-intestinal scope today. Plans changed when both my boys got the chicken pox. Definately not the news I wanted to hear. I was really bummed out that I was going to have to reschedule his scope and wait to find more answers. In the midst of my horrible attitude about having 2 kids with the chicken pox and missing Reilly's scope, I had the opportunity to go to an Autism Forum. It was at the Clements Centre ( who I have mentioned on several occassions as being the best place on earth). At this place would be several autism service providers in the community and other local families with children with autism. Wow. I felt excited to go. Honestly, I was really scared to go at first.

Cowardly, I made a phone call to the Clements Centre to get some additional information on the forum later that night. I blurted out to the lady on the opposite end of the line that I was going alone and I was nervous that I wouldn't have anyone to talk to. She assured me that I would have many amazing people to talk to and lots of stuff to check out. Fast forward later to that night, I get dropped off to the Forum. A nervous wreck. I am pretty shy and going to this alone, sans my chatterbox husband was daunting. I was going to face the music and make the best of it. Almost right away I was recognized by the woman I spoke to on the phone. She made me feel at ease right away. As the night progressed I started running into people who knew my name. Trust me, it's a bit odd to have people walk up to you and call you by name. Each person told me that the lady had told them about me. How sweet. No longer did I feel awkward and uncomfortable. It became amazing to hear each person's story. Every person I ran into I felt as though I was talking to a long lost relative. They knew everything about me, and I could relate to everything about them. Yet we weren't related at all. Not in the physical sense, but emotionally, more than ever.

I could talk with ease about my son's situation. Without fear of judgement or worry. Finally I felt as though I wasn't alone. This was the night I realized how lucky I was to recieve such a wonderful, amazing little boy. True, I have mentioned before how I love him so much and how amazing he is. I mean really, how amazing and unique he is. I now appreciate all his idiocincries and odd behaviours. Its' what makes him who he is. I am glad God didn't create him any other way. To have such amazing people love my son as deeply as I do. How did I ever deserve to have so many people in my life who I consider family? God didn't want Reilly to grow up alone and secluded like I originally thought at the diagnosis. He wanted him to grow up so loved and cared for he gave him this unique outlook on life. People may think I'm crazy for saying this, but I truly believe this.  I cannot count on two hands the amount of loving, devoted professional and personal people who have created a special place in my son's heart. All because my son' has Autism. What a wonderful, yet scary and sad gift all at the same time. Yes, their are lots of days I am sad Reilly has Autism and try to accept how much of a long journey this will be. But only in that forum did I realize how much blessings I can recieve from having such a wonderful, special needs boy.

 No longer do I feel hatred and anger towards God for giving me a child with this disorder. But I thank him for introducing me to the most amazing, good hearted people I have ever met in my life. People I may have never met otherwise. Without Autism, I wouldn't notice the small things in life. How to be patient and more loving, more gracious and attentive. God has shown me these things in such a different way. Far from something I could ever want.

Aside from yesterday, today I had another amazing thing happen. So not the best news, I found out I have chicken pox. Already having it before, I was surprised I could get it again. Also very mad I got it again. I was going to have to miss a week of work. Yikes. Not the best timing to miss that much work. I sat in disappointment the whole way home to my husband who reminded me not to dwell on all the negativity and focus on it. Wow, he was right. I was doing that. I then realized how much Autism has provided for us and given us so many gifts. I don't think I could thank God enough for being there for me when I didn't think he was.

I have always tried to be truthful in the realities of Autism. Never have I opened up to the true feelings how I deal with having a child with a disability. I'd love for you to step into my mind for a minute and get a bit of perspective of sorts on how it feels to have a child like mine.

Have you ever dreamed of having children after your married? What they would look like, which spouses' traits they would have etc. I did too. The difference is that I was given something totally different. Not by cho ice. I was "drafted" into Autism, unwillingly. I went in with attempts at highest hopes but kicking and screaming at the same time. Fighting for normalcy but embracing the differences at the same time. I dreamt of having amazing children. Boy, did I take for granted the simple things you would expect to have in a child.

To be truthful, I don't enjoy Reilly having Autism 99 % of my day. I absolutely HATE it. I know he's utterly the most amazing, smart little boy but its sure hard to see when the Autism comes full force everyday. My son's true self is masked by this Autism every day of his life. Struggling to figure out who he is and how he fits into this world.

I fight for my son everyday. I forget about me. And so do others. We are going through so many emotions. This our journey and our emotions too. I wish someone would ask how I am coping today. Most days, not very well. Sure, I cover it up very well with humour and a brave face. I go back and forth with the acceptance that my child even has Autism. It wasnt' fair he was given this. I get angered at the plan some times that God has for him. For him to struggle and need so much. Why can't it be easier like other kids have? I can only relate the process of dealing with it as compared to a relative passing away. Grief, acceptance. All those things we go through. I have to grieve that my child won't be what I expected, nor what I want him to be. He will be him in the good and the struggles.

I feel as though I wake up to Groundhog Day everyday. Do you know how hard it is to wake up to optimism when you know you will go through the same motions everyday with the same person. We teach Reilly the same thing everyday, consistently. And everyday, he wakes up and we have to hope he will catch on to what we taught him over and over for months. Simple things as asking for juice, or knowing how to put a puzzle together. We had Reilly reassessed developmentally by his new therapy place the other day and he is still at a 1 year to 1 1/2 year old level. He is 3. I feel as though he has been stuck being a 1 1/2 year old mentally for a very long time. He may appear to be 3 years old physically but has not progressed mentally. Most kids are predicatable in their milestones. Reilly isn't. Reilly has holes in his milestones. I dont' know what the next step is. Hard to cope with not knowing what is next and how to prepare for it. You put on a brave face and hope for the best.

I pray for the days that my son can have the appropriate skills of his age. That he can be unstuck from this stage he is at right now. Everyday we try to get closer and closer to our goals. They may be very simple goals but everything counts. I cannot describe truly how difficult is is to live the Autism lifestyle. It has been the hardest thing I will ever face in my lifetime. You have to be completely selfless. 1000% devotion to him.

As I write this, teary-eyed and physically and mentally exhausted beyond reason, how lucky I feel to have such a unique little boy. The way he looks at the world, to his own little way of showing how he loves you. I wouldn't change him for the world. I just hope that everyone understands that it isn't just his journey, but ours as well. What takes him 1000% effort to do, takes just as much effort from us as well.

One thing I also have a hard time with is the change in our social situation. I am saddened that I cannot be a good friend to most people. It is so hard to be able to just pick up and go out for a coffee or go to a playdate. We have so much going on and so much of our day is devoted completely to Reilly and Zander. Between therapy, doctors appointments and everyday things we have no energy left. Not even for ourselves or eachother as a married couple. I say to my friends, don't take it personally that I cannot be there for you. I really wish I could be there as much as people are there for us.

I read a quote the other day and it was very true " When you have met a child with Autism, you have met ONE child with Autism." It goes to show how different everyone's stories are yet we all struggle with the same aspects.

Make a wish!

It's official. He's growing up. I am now a Mom with permission slips, school artwork, indoor school shoes, backpacks and snacks. Did he have to turn 3 years old? Could I not leave him in his bubble of tiny diapers,onesies and rocking him to sleep? It was about time he started Preschool. He's actually doing very well in preschool and we are very proud of him. I had a proud mommy moment when I picked him up the other day from school to have his teacher hand me his very first school art work. With a smile on my face and a tear in my eye all I could muster up to say was "aww". He's been making friends and having a lot of fun at preschool. It's been going better than we could ever expect.

As much as I love and accept Reilly the way he is, it's still hard to grief the fact that your child has special needs.No parent ever wishes thier child to be born this way. But the thing is that you don't have a choice once your faced with it. I cannot go back and change him. I can only go forward and try to make do with what we are given. Some days are better than others. I relish in the days he can sing me "Row Row Your Boat", but am sadden in the days that people look at him funny in stores and that he doesn't even know his own name. It broke my heart when he didn't even know it was his own birthday a few weeks ago.

I think the worst feeling is when you know your child is being judged. Right in front of you. It's hard because Reilly doesn't have the "face of Autism". He looks like any other child. On the outside. On the inside he must be screaming for someone to understand how he thinks and feels. Even as his parent I struggle most days to figure out what makes him tick. Hearing him talk sometimes is like trying to translate someone speaking a forgein language. You only know a key word here or there and overtime you pick up new words slowly.

It's going to be a long few weeks coming up for Reilly. He has a sleep EEG to check if he is having seizures when he wakes up, a follow up on his B12 issues at the BC Children's Hospital, a gastro-intenstinal scope, and a hearing test follow up. A full plate for a busy 3 year old. He's quite a trooper through out each medical test. He's such a strong little boy who has been through what any other 3 year old shouldn't.

His first shouldn't be doctors, MRI's, CT Scan's and therapy. But such is life, and we try to adjust to it as much as we can. It's tough watching your child scream and cry with each procedure. It's heart breaking but we just want the best for him and his health. Slowly we find answers but more answers lead to more questions.