This week has been filled with plenty of emotions. It is a big adjustment when you aren't prepared for it. By prepared I mean they don't let you in on the real secrets of emotional Autism. How your child could go from being happy one minute to screaming, meltdown the next. I know most parents say that their kids go through this too. Difference with Reilly, and kids similar to him, is that the changing of moods is much more frequent and at a higher frequency. A typical child may have a meltdown once a day or a few a week. We have in the past, and on bad days go through many a day that last from 20 minutes to hours. Once Reilly is in this mood, it's a slim chance to get him out of it. Even though as a parent you know some of this behaviour is not his fault, you can't help but get frustrated. This morning I was trying to get Reilly ready for school. We do our best to help alleviate the morning stresses for him but most times it's unavoidable. We give him warnings that it's almost time to get ready for school, Ipad visual schedule etc. Our mornings go like this, "Reilly it's time to get ready for school". His response, "No I can't right now". Now, with a typical child, you can work around it, distract him/her and get them ready anyways, even with them not happy about it. It takes both of us to get Reilly ready if he really doesn't want to go to school. He will put up a physical fight with us. I can't tell you how many times I have been kicked in the chest, face, and throat to get him dressed. He rolls back and forth and thrashes his body all the while saying "NO,NO, NO! STOP IT!". This morning he didn't want to listen to me, even when standing beside me. Needless to say it was very frustrating. We both ended up getting him ready and after he left for school I felt guilty. Guilty for being mad at him. Not directly at him, but the situation that surrounds him and your whole family. The professionals don't tell you that when your child gets diagnosed with Autism, your whole family does too. Everyone suffers. I felt like a terrible mother for being mad at a kid who can't help it. Trust me, the guilt feels worse when your child is special needs. Somehow you feel the perfect parent bar is raised higher. When I think I have failed even a percentage I feel bad. As a parent, I am much more sensitive to things than most are. Good and bad emotions are heightened. On this particular morning, I was extremely exhausted and didn't want to go through the Groundhog Day of fighting him to get dressed. We are very, very tired everyday. The only way I can relate to it is when you have a newborn. When your baby is in the first few months of life, you get little sleep and you feel exhausted to the core. We still feel this way 4 years later! Reilly doesn't sleep well at all. He is currently awake, 11pm, and wont' go to bed, even with his night medicine. He will be up at 7am and wake 2-3x a night for a drink. He sleeps millimeters from me in the bed, literally. He will ensure every body part of his is touching mine. Needless to say a full night's sleep is long gone. Except for Zander, who is awesome at sleeping through the night. Thank God!
With sharing these moments in my blog, I don't want to give everyone the impression that everyday we feel negative. Sure, we have some trying and hard moments with him but with those we get some amazing ones. The day we found out he can write his own name at school, or when he says "Mommy! There you are! I am so happy to see you!" when I come home from work at night. I feel lucky to have a funny, take no for an answer child. He is the sweetest little boy and I feel so lucky that he finally calls me Mom. ( a year ago it was "Hey you" or "Bri"). My husband and I both agree we couldn't imagine Reilly any other way. Even if that means having the good and the bad.
Thursday 22 November 2012
Saturday 17 November 2012
"If it's not alright, then it's not the end"
Hello Everyone!
I decided to start writing my blog again! I must say it does feel nice to write again. We have been through so much since I have last blogged. To say it was a roller coaster ride is an understatement. We've definately had our ups and downs this year. I will give everyone a recap on Reilly's current medical conditions that we found out the past 7 months.
-Chromosome 2 and 6 slight deletions. (DNA). Chromosome 6 deletion causes low muscle tone, poor coordination, seizures and development delays. No effects for the Chromosome 2 deletion.
-Epilepsy
-3 Vitamin deficiencies (which are reasonable under control ) Vitamin D,B12, Iron
-Mild Lazy Eye
-ADHD
We fought so hard to get these answers. Constant visits to specialists and hospitals for testing. I was determined to not let a doctor tell one more time that "Sorry we know their is something wrong with your child, but we may never figure it out". That wasn't good enough for me. How do you tell that to a parent anyway? I knew in my heart their needed to be a reason. We knew it was going to be hard for Reilly, given the multiple testing but we wanted to do everything we could. I can still remember my heart sinking and fighting tears in my eyes when at one point we had to get some blood work done for Reilly, 7 viles. Yes seven. My son has sensory issues. He doesn't like people touching him that he doesn't approve. So I sat there with a brave face and held his legs between mine with all the force I could. He knew what was coming and started kicking and getting upset. I then proceeded to put my arms over his chest and arms. I came face to face with 3 nurses. He knew exactly what was happening and wanted no part of it. My son has had blood work done multiple times and knew he hated it. As soon as that needle hit his arm he cried harder than I could have ever imagined. He started crying hysterically. He cried and yelled for his Dad. Who mind you was in the car with my other son. All I could manage to tell him amongst my own guilt and sadness was "It's ok Reilly, Mommy's here", "Almost done Reilly, it's ok". All I knew is that it didn't feel ok. I hated it, every moment of it. But if I didn't do this for him and for us we wouldn't get the help we needed for him. It felt bittersweet. I hated causing my son pain. I wanted to wisk him away and tell him I was sorry.
We get moments like this often. And each time I put on a brave face and act like I can do it. Inside I want to scream. Not scream at the doctors and nurses. But God. Why does he decide to put my son through such hell. Such a precious, sweet little boy.
Today we had to take my son to the eye specialist. The doctor started talking to Reilly as if she thought he understood her language. She wanted to dilate his eyes so she said we had to put eye drops in his eyes. My husband and I know the drill. Restrain. It's an ugly word in our house. But a common one with Dr appts. So it took all my strength to hold his legs and arms again while my husband attempted to calm him down and hold his head still. Needless to say he freaked out and cried hard. I hate these moments. At this point I was exhausted from chasing him around in the waiting room with his younger, just as active brother ( 2 yrs old). I felt I had no strength in me to hold my child down for his safety. We have learned we must do everything as a team. We never ever go to any appt alone. It took a while to get a good system down but we did it. We both know what each of our roles are in dealing with him in public. It almost becomes a wierd normal state of mind.
No one tells you these things when your given a child like mine. Their is no book in this world that could ever explain how difficult it is or how absolutely rewarding it is at the same time. With this new blog I want to share more than I did before. I want to really share exact moments like I did above. Someone shared an amazing quote to me "If it's not alright,then it's not the end".
I decided to start writing my blog again! I must say it does feel nice to write again. We have been through so much since I have last blogged. To say it was a roller coaster ride is an understatement. We've definately had our ups and downs this year. I will give everyone a recap on Reilly's current medical conditions that we found out the past 7 months.
-Chromosome 2 and 6 slight deletions. (DNA). Chromosome 6 deletion causes low muscle tone, poor coordination, seizures and development delays. No effects for the Chromosome 2 deletion.
-Epilepsy
-3 Vitamin deficiencies (which are reasonable under control ) Vitamin D,B12, Iron
-Mild Lazy Eye
-ADHD
We fought so hard to get these answers. Constant visits to specialists and hospitals for testing. I was determined to not let a doctor tell one more time that "Sorry we know their is something wrong with your child, but we may never figure it out". That wasn't good enough for me. How do you tell that to a parent anyway? I knew in my heart their needed to be a reason. We knew it was going to be hard for Reilly, given the multiple testing but we wanted to do everything we could. I can still remember my heart sinking and fighting tears in my eyes when at one point we had to get some blood work done for Reilly, 7 viles. Yes seven. My son has sensory issues. He doesn't like people touching him that he doesn't approve. So I sat there with a brave face and held his legs between mine with all the force I could. He knew what was coming and started kicking and getting upset. I then proceeded to put my arms over his chest and arms. I came face to face with 3 nurses. He knew exactly what was happening and wanted no part of it. My son has had blood work done multiple times and knew he hated it. As soon as that needle hit his arm he cried harder than I could have ever imagined. He started crying hysterically. He cried and yelled for his Dad. Who mind you was in the car with my other son. All I could manage to tell him amongst my own guilt and sadness was "It's ok Reilly, Mommy's here", "Almost done Reilly, it's ok". All I knew is that it didn't feel ok. I hated it, every moment of it. But if I didn't do this for him and for us we wouldn't get the help we needed for him. It felt bittersweet. I hated causing my son pain. I wanted to wisk him away and tell him I was sorry.
We get moments like this often. And each time I put on a brave face and act like I can do it. Inside I want to scream. Not scream at the doctors and nurses. But God. Why does he decide to put my son through such hell. Such a precious, sweet little boy.
Today we had to take my son to the eye specialist. The doctor started talking to Reilly as if she thought he understood her language. She wanted to dilate his eyes so she said we had to put eye drops in his eyes. My husband and I know the drill. Restrain. It's an ugly word in our house. But a common one with Dr appts. So it took all my strength to hold his legs and arms again while my husband attempted to calm him down and hold his head still. Needless to say he freaked out and cried hard. I hate these moments. At this point I was exhausted from chasing him around in the waiting room with his younger, just as active brother ( 2 yrs old). I felt I had no strength in me to hold my child down for his safety. We have learned we must do everything as a team. We never ever go to any appt alone. It took a while to get a good system down but we did it. We both know what each of our roles are in dealing with him in public. It almost becomes a wierd normal state of mind.
No one tells you these things when your given a child like mine. Their is no book in this world that could ever explain how difficult it is or how absolutely rewarding it is at the same time. With this new blog I want to share more than I did before. I want to really share exact moments like I did above. Someone shared an amazing quote to me "If it's not alright,then it's not the end".
Friday 24 February 2012
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.
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.
Monday 16 January 2012
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.
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.
Monday 9 January 2012
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.
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.
Friday 18 November 2011
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.
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.
Wednesday 26 October 2011
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.
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.
Subscribe to:
Posts (Atom)