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".
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