It's been months since my first blog post. I had every intention of writing earlier, but funny how life gets so busy and complicated, taking time to sit down and sort out and pour out my thoughts has been difficult.
In my last post, I was coming to terms with my daughter Jillian's Sensory Processing Issues, and with the incredible resources and help I've received thus far, things have gotten so much better. She amazes me how much she can handle now compared to last year. Things such as having her bare feet on the grass, getting water dumped on her and not reacting in a panic, playing in the sandbox, getting her hair braided, self-dressing, and most importantly, her self-regulation has improved tremendously.
What I didn't mention in my last post was that I had been on a waiting list since before Christmas to have a diagnosis given to Jillian. I came to this decision not because I wanted there to be something wrong with her, but I knew that if her Sensory Issues got officially "identified" by a professional, then it would ensure she would receive the extra help she needed in the school system.
I must add that Jillian, along with her twin brother and sister were born at 34 weeks (give or take a few days), and because of this, their development has been followed since birth by the various agencies in Guelph that help with Speech, O/T and Child Development. I have in the past year had help from a wonderful Infant Child and Development Consultant through Trellis in Guelph (now called the Canadian Mental Health Association), who has helped guide through this process. We had many discussions about Jillian, and she has been her school to observe her in the classroom setting a few times. She advised me that I could have Jillian put on a wait list to be diagnosed by a Developmental Paediatrician from McMaster Hospital who also works with Kidsability here in Guelph. Also, her younger brother Nathan (one of the twins) had been getting help in preschool due to his social and communication delays. Although I did not have as many concerns for Nathan due to the fact that he was not quite 3 years old when put on the waiting list, and thought things might improve with maturity and speech help, I wanted him to be evaluated also. I felt that it would be better to intervene sooner than later so that more help could be provided to him.
So, fast forward to May 8th. That was the day that the Paediatrician observed both Jillian and Nathan, separately. There was a team assessment involved which included a parent interview (me), child care observation (at their respective schools), informal play session with a speech-language pathologist and a clinical coordinator at Trellis, physical examination and review of medical history. This was an exhausting day for me (my husband stayed home from work that day to look after Avery while I was with Jillian and Nathan).
I was relieved when the day was finished, and was told that we would follow up with the Developmental Paediatrician b on May 23rd for the results. I can't speak for my husband, but I was very anxious leading up to that day.
When we sat down with the Paediatrician, she started with Nathan, and I was semi-surprised to learn that his profile was consistent with a diagnosis of High Functioning Autistic Disorder. I remember my husband and I squeezed hands at that point. She very graciously explained how she came to this diagnosis, and let us know that we could evaluate him again in a year's time and if there has been a marked improvement, the diagnosis could perhaps be taken away. Then she moved on to Jillian's assessment. (Another hand squeeze). I was sort of expecting a diagnosis of Sensory Processing Disorder, but were told that Jillian without question met the criteria to be also diagnosed with High Functioning Autistic Disorder.
At this point, you might be surprised to hear me say that a weight was lifted from my shoulders. We now had answers and could move forward. I was quite relieved to learn that because both of our children are high functioning, that with treatment, they could function in the world quite well, and lead relatively normal lives.
We left the appointment in a fog, and I must admit that has stayed with me to this day. However, both my husband and I agree that this will not change how much we love our children, and I look at this as a gift for us as a family to grow together, learn from each other, and celebrate that God has created us just the way they were supposed to be. I have hope that I will learn to be a stronger person who has been given this opportunity to advocate for my children, and to help others as I have been helped.
One final thing I must say before I end this blog. I have met some of the most generous, supportive people this past year. Each person I've met has had their own unique challenges with their children, but had arms outstretched to me in support and good will, and for them I thank and hope we can be there for each other going forward.
Tuesday 28 May 2013
Monday 11 February 2013
What a long strange trip it's been..
Sometimes I'll sit and stare at my daughter while she plays quietly at the kitchen table. I'll smile to myself as I watch her play quietly with her toys, having conversations with them, and realize just how far she has come. It's hard to imagine that just over a year ago, I learned about J.'s Sensory Processing difficulties.
My name is Megan, and the subject of my blog is the my beautiful, charming and fun-loving daughter, J. (For now, I'm going to use my daughters first initial of her first name, "J" when referring to her.)
I had known since she was a toddler, that things with "J" were a little "off" in her development, and had some "quirks" in her personality. She never crawled in the hands and knees way, she just "bum-scooted" around, which quickly wore out the rear of her pants, but she moved efficiently.
She was late to walk by normal standards (about 20 months old). We had her assessed by an OT, and were given tips to encourage her to get started. By 21 months she was well on her way and never looked back. She also had been late to talk, but we have had help with her speech and language ever since, and she has made amazing strides with her receptive and expressive language.
Some of the "quirks" (I used to refer to them as) became quite apparent at the age of around 18-months of age. J. had very strong negative reactions to loud noises (my hair dryer), getting water poured on her head during bath time, hair brushing. When she reached about the age of 2, her reactions intensified into temper tantrums, or running away in distress while we tried to calmly get her to come back to us. This occurred with hair cuts, hair brushing, teeth brushing, nail cutting. She had an aversion to tags on her clothing, so we had to cut them off each article of clothing, and that seemed to settle her. During winter, she often refused to wear mittens and any other winter-gear. Outside when other kids would appreciate trudging through a fresh snowfall, she would try desperately to get the snow off her boots.
During the warmer months, she would cry when her feet touched grass, or got wet in any way. It was all so very puzzling to me, and very frustrating for my husband and I. We just couldn't understand these "quirks". We would chalk it up to the "terrible twos" or the fact that she was feeling out of sorts because we had just welcomed her twin brother and sister 2 weeks before her second birthday, and her whole world, and being the centre of our world had changed.
As we adjusted to the never-ending exhaustion of round-the-clock feedings for the twins, and the perpetual sleep deprivation, we took solace in the fact that she had a wonderful babysitter who J. had been going to from the time I went back to work after maternity leave. Our babysitter cared for other kids close to J's age to interact with. Unfortunately, J. always interact with the others, she seemingly would prefer to play by herself. We had also enrolled her in Nursery school for two mornings a week. At first, she hated going, but over time she learned to trust her care providers and the structured learning environment.
Just after J. turned three, an event solidified in my mind that something was clearly off with our daughter. I remember it like it was yesterday. It was when she attended a friend's 3rd birthday party.
I was excited for her, this was her first birthday party and it was my best friend's daughter! There was going to be a face-painter, some lunch, and then afterwards they were going to go to a play centre where the kids could run, jump and climb and have lots of fun. I had such high expectations for J. that she would enjoy every minute, because I know I would have as a kid. Well, things went south fast. The lovely face-painter arrived at my friends' house, and the other girls greeted her excitedly. We went upstairs to a bedroom where she set up her kit, and was going to paint the girls faces individually. I could see that my daughter looked around the room and was looking for a quick exit, so I quickly said to her "Oh J. look, you could be a butterfly, or a bee - you like those animals, right! - do you want to go first?" She said no, which I expected. I thought if she watched one of the other girls get their face painted, she would see how cool it was, and sit still for her turn. Well, for the next 10 minutes, she tried to bolt out of the bedroom. I kept bringing her back in with words of encouragement, while all the while growing hot in the face from embarrassment. I couldn't understand what her problem was! Meanwhile, as J.'s reactions escalated, I kept apologizing profusely to my friend and the make up artist. I desperately couldn't understand why she was reacting so negatively??
I realized after struggling with J. for what seemed like an eternity, and her getting more and more upset, I stopped pushing her. Defeated and exhausted, I realized I was not going to win this battle. I took her downstairs, where she somewhat calmed down. Thankfully, the other girls finished up first, and their faces looked amazing. I felt a pang in my heart that Jillian could not share in the moment with the other girls, it was like she was an outsider already at 3 years old. Lunch came next and J. luckily sat relatively well at the table. She did fall out of her chair once to my dismay, but luckily she recovered quickly and resumed her meal. I knew that I had lost J. once presents were opened. She seemed to care less that her friend was opening her presents, J. was concerned about what toys she could find to play with herself. I told my friend that I wasn't sure how she was going to do at the play centre, but we agreed we could give it a try, and go home if she reacted poorly.
Well, in the car, I tried to excitedly explain to J. where we were going, and that it was going to be a lot of fun. She was quiet for most of the ride. When we arrived, and I found parking, she fought me to get out of the car. Like a stubborn fool, I dragged her into the place, determined that if she were to see how fun it looked, that she would miraculously snap out of it and join in the fun. Well, I was sorely mistaken. She cried and kicked, and tried to find the exit. I exhaustedly told my dear friend that this was the end of it for us, and we left without saying goodbye to the birthday girl. In the car on the way back home, I was shaking, upset, exasperated, sad, confused. When we got in the house, I immediately took her to her room for some quiet time. She ended up sleeping for 3 hours (she had stopped napping almost a year prior to that, so I knew she had absolutely exhausted herself.
Fast forward to about a year ago, when she was almost 4. We were seeing a wonderful speech pathologist, who changed our lives and our understanding of Jillian. She had asked a few questions about Jillian, like does she not like tags on her clothes? I just about fell off of my chair, "well, yes she hates tags on her clothes". Does she respond negatively to getting hands messy, etc.?", I respond "yes!". Other questions were asked, I can't recall them. She then told me about Sensory Processing Disorder, and my world changed.
Our whole family began to see our daughter J's "quirks" in a totally different light, and we grew more empathetic to her once we researched it further, and spoke with professionals who understand it fully.
Fast-forward to present day. My daughter J. will be 5 years old in a month, and she, and our whole family have made incredible strides together. My goal in writing this blog is to educate others who may not be familiar with Sensory Processing Disorder. Most importantly, I hope to help others who are experiencing Sensory Processing issues with their children feel less alone and isolated. I have certainly had many, many moments of feeling like a failure as a parent, feeling alone and not being understood by others. I hope to share a little bit more of my experiences, and what has worked and what hasn't worked for us. It is an ongoing process, and I look forward to sharing my journey with you.
My name is Megan, and the subject of my blog is the my beautiful, charming and fun-loving daughter, J. (For now, I'm going to use my daughters first initial of her first name, "J" when referring to her.)
I had known since she was a toddler, that things with "J" were a little "off" in her development, and had some "quirks" in her personality. She never crawled in the hands and knees way, she just "bum-scooted" around, which quickly wore out the rear of her pants, but she moved efficiently.
She was late to walk by normal standards (about 20 months old). We had her assessed by an OT, and were given tips to encourage her to get started. By 21 months she was well on her way and never looked back. She also had been late to talk, but we have had help with her speech and language ever since, and she has made amazing strides with her receptive and expressive language.
Some of the "quirks" (I used to refer to them as) became quite apparent at the age of around 18-months of age. J. had very strong negative reactions to loud noises (my hair dryer), getting water poured on her head during bath time, hair brushing. When she reached about the age of 2, her reactions intensified into temper tantrums, or running away in distress while we tried to calmly get her to come back to us. This occurred with hair cuts, hair brushing, teeth brushing, nail cutting. She had an aversion to tags on her clothing, so we had to cut them off each article of clothing, and that seemed to settle her. During winter, she often refused to wear mittens and any other winter-gear. Outside when other kids would appreciate trudging through a fresh snowfall, she would try desperately to get the snow off her boots.
During the warmer months, she would cry when her feet touched grass, or got wet in any way. It was all so very puzzling to me, and very frustrating for my husband and I. We just couldn't understand these "quirks". We would chalk it up to the "terrible twos" or the fact that she was feeling out of sorts because we had just welcomed her twin brother and sister 2 weeks before her second birthday, and her whole world, and being the centre of our world had changed.
As we adjusted to the never-ending exhaustion of round-the-clock feedings for the twins, and the perpetual sleep deprivation, we took solace in the fact that she had a wonderful babysitter who J. had been going to from the time I went back to work after maternity leave. Our babysitter cared for other kids close to J's age to interact with. Unfortunately, J. always interact with the others, she seemingly would prefer to play by herself. We had also enrolled her in Nursery school for two mornings a week. At first, she hated going, but over time she learned to trust her care providers and the structured learning environment.
Just after J. turned three, an event solidified in my mind that something was clearly off with our daughter. I remember it like it was yesterday. It was when she attended a friend's 3rd birthday party.
I was excited for her, this was her first birthday party and it was my best friend's daughter! There was going to be a face-painter, some lunch, and then afterwards they were going to go to a play centre where the kids could run, jump and climb and have lots of fun. I had such high expectations for J. that she would enjoy every minute, because I know I would have as a kid. Well, things went south fast. The lovely face-painter arrived at my friends' house, and the other girls greeted her excitedly. We went upstairs to a bedroom where she set up her kit, and was going to paint the girls faces individually. I could see that my daughter looked around the room and was looking for a quick exit, so I quickly said to her "Oh J. look, you could be a butterfly, or a bee - you like those animals, right! - do you want to go first?" She said no, which I expected. I thought if she watched one of the other girls get their face painted, she would see how cool it was, and sit still for her turn. Well, for the next 10 minutes, she tried to bolt out of the bedroom. I kept bringing her back in with words of encouragement, while all the while growing hot in the face from embarrassment. I couldn't understand what her problem was! Meanwhile, as J.'s reactions escalated, I kept apologizing profusely to my friend and the make up artist. I desperately couldn't understand why she was reacting so negatively??
I realized after struggling with J. for what seemed like an eternity, and her getting more and more upset, I stopped pushing her. Defeated and exhausted, I realized I was not going to win this battle. I took her downstairs, where she somewhat calmed down. Thankfully, the other girls finished up first, and their faces looked amazing. I felt a pang in my heart that Jillian could not share in the moment with the other girls, it was like she was an outsider already at 3 years old. Lunch came next and J. luckily sat relatively well at the table. She did fall out of her chair once to my dismay, but luckily she recovered quickly and resumed her meal. I knew that I had lost J. once presents were opened. She seemed to care less that her friend was opening her presents, J. was concerned about what toys she could find to play with herself. I told my friend that I wasn't sure how she was going to do at the play centre, but we agreed we could give it a try, and go home if she reacted poorly.
Well, in the car, I tried to excitedly explain to J. where we were going, and that it was going to be a lot of fun. She was quiet for most of the ride. When we arrived, and I found parking, she fought me to get out of the car. Like a stubborn fool, I dragged her into the place, determined that if she were to see how fun it looked, that she would miraculously snap out of it and join in the fun. Well, I was sorely mistaken. She cried and kicked, and tried to find the exit. I exhaustedly told my dear friend that this was the end of it for us, and we left without saying goodbye to the birthday girl. In the car on the way back home, I was shaking, upset, exasperated, sad, confused. When we got in the house, I immediately took her to her room for some quiet time. She ended up sleeping for 3 hours (she had stopped napping almost a year prior to that, so I knew she had absolutely exhausted herself.
Fast forward to about a year ago, when she was almost 4. We were seeing a wonderful speech pathologist, who changed our lives and our understanding of Jillian. She had asked a few questions about Jillian, like does she not like tags on her clothes? I just about fell off of my chair, "well, yes she hates tags on her clothes". Does she respond negatively to getting hands messy, etc.?", I respond "yes!". Other questions were asked, I can't recall them. She then told me about Sensory Processing Disorder, and my world changed.
Our whole family began to see our daughter J's "quirks" in a totally different light, and we grew more empathetic to her once we researched it further, and spoke with professionals who understand it fully.
Fast-forward to present day. My daughter J. will be 5 years old in a month, and she, and our whole family have made incredible strides together. My goal in writing this blog is to educate others who may not be familiar with Sensory Processing Disorder. Most importantly, I hope to help others who are experiencing Sensory Processing issues with their children feel less alone and isolated. I have certainly had many, many moments of feeling like a failure as a parent, feeling alone and not being understood by others. I hope to share a little bit more of my experiences, and what has worked and what hasn't worked for us. It is an ongoing process, and I look forward to sharing my journey with you.
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