The first time Noah repeated the words, "I Love You", was when he was almost 7 years old. Late by normal standards, but still the most precious words that have ever been spoken. Although the words naturally occur now on a regular basis, I am still the one who has to say them first. Noah repeats the words back to me every night when I turn off his bedroom lights. I have always felt that even though the words have become a habit, that Noah does mean them when he says them.
Last night while watching some fireworks that lit up our neighborhood sky from afar, Noah put his head on my shoulder, looked up at me, and said, "I love you, Mom." He will be 13 next month. I have waited almost 13 years to hear those words unprompted.
No amount of fire works could compare to the explosion I felt in my own heart last night. WELL. WORTH. THE. WAIT.
Sunday, June 17, 2012
Tuesday, May 8, 2012
Autism Acceptance
I started this blog a few years ago, with the expectation that I would write something positive, educational, or heart-warming every month. I have failed my original goal. Lately, the negative aspects have overshadowed the beautiful moments. I felt guilty about writing negative thoughts, so I did not post my blog entries.
April was a magical month for me. Two special events occurred that opened my eyes to the beauty of autism, and helped me embrace it once again. Six fourth and fifth grade girls joined me in a book discussion group at the local school. We read Rules by Cynthia Lord, and The Reinvention of Edison Thomas by Jacqueline Houtman. Both novels have a character with autism. The discussions with these girls gave me new hope that we are not only on a road to more awareness of autism, but we are paving a path for acceptance as well.
Last week, I also had an opportunity to do an autism presentation to seven elementary classrooms in our home town. My "neurotypical", ten-year-old daughter joined me for two of the presentations. Hannah read a book about a boy with autism, "Ian's Walk", and afterwards I asked the children to identify the similarities and differences between Ian and themselves. The differences were easy to identify. "Ian likes to watch the fan instead of people." "Ian doesn't like baseball or stories, but I do." "Ian would rather smell bricks than smell flowers." The younger students, however, were quicker to point out the similarities. The third and fifth grade students had difficulty with this.
Interesting.
Those Kindergarten and First grade students quickly stated that Ian is a "person" and he has "feelings". We talked about how to be a friend to someone like Ian, and how Ian would feel if he had no one to play with. Easy. I taught awareness of autism, but I did not need to teach acceptance, because the children were too young to have learned discrimination. Acceptance came naturally to them.
The older elementary students needed to really think hard to come up with ways in which the autistic character in the book was similar to themselves. I concluded that prejudice and discrimination must develop sometime between second and fifth grade. I believe it is partly developmental, but also environmental. Prejudice and discrimination are learned behaviors. I now realize that educating these students needs to occur before third grade. Refreshing them with awareness discussions on a yearly basis is also necessary.
While attending the state Autism Society Conference a few days ago, I bought a new book. "All About My Brother" is written by a nine-year-old girl who has a brother with autism. At the end of the book, there are three pages that enable the reader to write his/her own stories and experiences with autism. Hannah is already thinking about what she is going to add to the book, and she is also talking about going into more classrooms and speaking every year about autism awareness. I do believe she and I will make a great team!!
April was a magical month for me. Two special events occurred that opened my eyes to the beauty of autism, and helped me embrace it once again. Six fourth and fifth grade girls joined me in a book discussion group at the local school. We read Rules by Cynthia Lord, and The Reinvention of Edison Thomas by Jacqueline Houtman. Both novels have a character with autism. The discussions with these girls gave me new hope that we are not only on a road to more awareness of autism, but we are paving a path for acceptance as well.
Last week, I also had an opportunity to do an autism presentation to seven elementary classrooms in our home town. My "neurotypical", ten-year-old daughter joined me for two of the presentations. Hannah read a book about a boy with autism, "Ian's Walk", and afterwards I asked the children to identify the similarities and differences between Ian and themselves. The differences were easy to identify. "Ian likes to watch the fan instead of people." "Ian doesn't like baseball or stories, but I do." "Ian would rather smell bricks than smell flowers." The younger students, however, were quicker to point out the similarities. The third and fifth grade students had difficulty with this.
Interesting.
Those Kindergarten and First grade students quickly stated that Ian is a "person" and he has "feelings". We talked about how to be a friend to someone like Ian, and how Ian would feel if he had no one to play with. Easy. I taught awareness of autism, but I did not need to teach acceptance, because the children were too young to have learned discrimination. Acceptance came naturally to them.
The older elementary students needed to really think hard to come up with ways in which the autistic character in the book was similar to themselves. I concluded that prejudice and discrimination must develop sometime between second and fifth grade. I believe it is partly developmental, but also environmental. Prejudice and discrimination are learned behaviors. I now realize that educating these students needs to occur before third grade. Refreshing them with awareness discussions on a yearly basis is also necessary.
While attending the state Autism Society Conference a few days ago, I bought a new book. "All About My Brother" is written by a nine-year-old girl who has a brother with autism. At the end of the book, there are three pages that enable the reader to write his/her own stories and experiences with autism. Hannah is already thinking about what she is going to add to the book, and she is also talking about going into more classrooms and speaking every year about autism awareness. I do believe she and I will make a great team!!
Friday, November 4, 2011
Thankful
I have been noticing many of my friends posting something they are thankful for every day this month. On a good day, I could think of more than a few dozen things to be thankful for. Today, however, is not a good day. In fact, it has not been a good week. When you are having a difficult week with an autistic child in the home, these negative scenarios overshadow everything to be thankful for. Yup.........that's what happens.
It was my decision a few years ago to call this blog "embracing autism". It has been my honor to write about all the positives that overshadow the negative. I have always thought that if I encourage anyone out there who is parenting a child on the Spectrum to keep doing what they are doing, to let them know they are not alone, and to help them see all the positive traits their child brings to their family and to this world, then I am doing a great service. Just one person. Just one.
Today, however, is my day to say, "I know". I know how you feel when you are up all night with a 12 year old who is pounding the wall. I know how you feel when the guilt is overwhelming because you haven't been able to attend to the normally functioning child in the household due to the extended hours with the one suffering at the time. I know how you feel when your child's skills start to regress. I know how you feel when the cocktail of medications prescribed by the pediatrician and psychiatrist stop working.
I know what it is like to feel helpless.
My purpose today is to say, "You are not alone."
My son Noah uses movies to describe how he feels, and to find the right words for the situation he is in at the time. So I will try that here. At the end of the credits of Toy Story 2, there are some "out-takes." Barbie comes on and very cheerily says, "Bye, Bye now.......Bye Bye." Then her mouth falls into a frown and she says "Is everybody gone?..........Good, because my cheeks are killing me!" I take pride in the fact that other parents connect with me because of the positive spin I can put onto every autistic behavior. I take pride that I go into public with a smile and genuinely cheerful attitude with my children. But I am as exhausted as Barbie!
So here I sit, munching down fun-size candy bars and typing on my blog about my shitty week. I *know* others have it worse than I do. I *know* there are more positives in my life than negatives. However, today is not a day I see that. Maybe tomorrow will be better. But for today, I am giving myself a belly ache and puffy eyes because every once in a while, a Mom just needs a day off. Let's call it "Mental Health Day."
It was my decision a few years ago to call this blog "embracing autism". It has been my honor to write about all the positives that overshadow the negative. I have always thought that if I encourage anyone out there who is parenting a child on the Spectrum to keep doing what they are doing, to let them know they are not alone, and to help them see all the positive traits their child brings to their family and to this world, then I am doing a great service. Just one person. Just one.
Today, however, is my day to say, "I know". I know how you feel when you are up all night with a 12 year old who is pounding the wall. I know how you feel when the guilt is overwhelming because you haven't been able to attend to the normally functioning child in the household due to the extended hours with the one suffering at the time. I know how you feel when your child's skills start to regress. I know how you feel when the cocktail of medications prescribed by the pediatrician and psychiatrist stop working.
I know what it is like to feel helpless.
My purpose today is to say, "You are not alone."
My son Noah uses movies to describe how he feels, and to find the right words for the situation he is in at the time. So I will try that here. At the end of the credits of Toy Story 2, there are some "out-takes." Barbie comes on and very cheerily says, "Bye, Bye now.......Bye Bye." Then her mouth falls into a frown and she says "Is everybody gone?..........Good, because my cheeks are killing me!" I take pride in the fact that other parents connect with me because of the positive spin I can put onto every autistic behavior. I take pride that I go into public with a smile and genuinely cheerful attitude with my children. But I am as exhausted as Barbie!
So here I sit, munching down fun-size candy bars and typing on my blog about my shitty week. I *know* others have it worse than I do. I *know* there are more positives in my life than negatives. However, today is not a day I see that. Maybe tomorrow will be better. But for today, I am giving myself a belly ache and puffy eyes because every once in a while, a Mom just needs a day off. Let's call it "Mental Health Day."
Wednesday, March 9, 2011
The definition of BEAUTY
Valentines Day, 2011. We were anxiously waiting at the counter of our Disney World resort. After about 15 minutes of explanations from the resort staff, Noah was feeling restless, and was engaging in alot of "flipping" and movie talk. Feeling excited to finally have our tickets and room assignment in our hands, we started to walk away when a lady who was still in line stopped me and stated, "You have a beautiful family." I smiled and thanked her. She then continued in a graceful thick southern accent, "I have a son with autism. Your family is just beautiful."
Recognition is defined as "the identification of something as having been previously seen, heard, known, etc." This stranger recognized that Noah had autism because she had experienced it in her own life. She also used the word "beautiful". Beautiful is defined as "having beauty; having qualities that give great pleasure or satisfaction to see, hear, think about, etc.; delighting the senses or mind."
When I am in public with my family, I am used to people coming up to us and stating, "You have a beautiful daughter." Hannah radiates beauty with her blue eyes, long lashes, milky perfect skin, and golden blonde hair. I have never, however, been told by a stranger that I have a beautiful family. Strangers often do not recognize that Noah has autism, and they see the behavior he exhibits instead of his gorgeous eyes and handsome smile.
I imagine this lady, though, was not talking about "surface" beauty. She was genuinely complimenting my family on how well adjusted, how patient, and how accepting of one another we are as a collective unit. There is a saying, "To know me is to love me." I believe that only those who truly KNOW autism could recognize or fully embrace it's beauty so completely that it captures their heart.
In his eleven years, Noah has captured many hearts, including those of his family, his school aide, his therapists, and many friends. The lady in line at the resort, a stranger, recognized the beauty he brings to our family and reached out to me. I am proud to be Noah's and Hannah's mom, and as a parental unit, Brian and I ROCK! Every once in a while we need that "pat on the back" and that reassurance. Her words were probably one of the biggest compliments I have ever received.
I don't know where she lives.
I don't know her name.
All I know is that her words left a big impression.
Thank you.
Recognition is defined as "the identification of something as having been previously seen, heard, known, etc." This stranger recognized that Noah had autism because she had experienced it in her own life. She also used the word "beautiful". Beautiful is defined as "having beauty; having qualities that give great pleasure or satisfaction to see, hear, think about, etc.; delighting the senses or mind."
When I am in public with my family, I am used to people coming up to us and stating, "You have a beautiful daughter." Hannah radiates beauty with her blue eyes, long lashes, milky perfect skin, and golden blonde hair. I have never, however, been told by a stranger that I have a beautiful family. Strangers often do not recognize that Noah has autism, and they see the behavior he exhibits instead of his gorgeous eyes and handsome smile.
I imagine this lady, though, was not talking about "surface" beauty. She was genuinely complimenting my family on how well adjusted, how patient, and how accepting of one another we are as a collective unit. There is a saying, "To know me is to love me." I believe that only those who truly KNOW autism could recognize or fully embrace it's beauty so completely that it captures their heart.
In his eleven years, Noah has captured many hearts, including those of his family, his school aide, his therapists, and many friends. The lady in line at the resort, a stranger, recognized the beauty he brings to our family and reached out to me. I am proud to be Noah's and Hannah's mom, and as a parental unit, Brian and I ROCK! Every once in a while we need that "pat on the back" and that reassurance. Her words were probably one of the biggest compliments I have ever received.
I don't know where she lives.
I don't know her name.
All I know is that her words left a big impression.
Thank you.
Wednesday, January 19, 2011
The Pot calling the Kettle Black?
There was a time when I regularly passed judgement on parents who took their children out of school to take vacations. I remember believing that those parents must not value the importance of education. Their son's deer hunting experience with his father was more important than learning the basic reading, writing, and arithmetic that school offered; or that trip to Mexico was what Mom wanted, so the whole family went.
I eat my words. Who am I to judge?? I don't know the situation. What if that Father felt his teenage son slipping away into a world of drugs, and this time to reconnect saved his son? What if that Mother was just given 6 months to live because of breast cancer, and the family was taking her on the vacation of her dreams, creating beautiful memories, while living out her final wish?
Now, here I am, planning a Disney vacation for February. No, the children do NOT have off school. Not a single day off. But we are going. We are taking them out of school (input gasps here) to go on a family vacation. What could possibly be the reason? How could this be more important than the incredible education they are receiving during these formative years?
Those who know me know that I certainly value education. Having Noah, however, has taught me that there are lessons in life that are just as important, if not more so, than reading, writing, and arithmetic. Our first family vacation to Disney was in 2006. (Picture below) It was Amazing. It was Wonderful. It was Magical. And.....it was in February, when the children were scheduled to be in school.
My explanation has a lot to do with his autism. Noah has difficulty with crowds, with heat, with overstimulation, and with waiting. Disney is less crowded in February, and the temperature is in the 70's. The conditions are perfect for his needs. When Noah is doing well, the whole family is relaxed. Therefore, the conditions are perfect for the whole family. We also connected as a family while there. This is so important when there is a sibling who is neurotypical. We were in a location that provided "equal" opportunities for BOTH children.
Here is another tidbit of information. Noah's language and social skills progressed greatly during the week we spent at Disney in 2006. We had never seen such progression of skills before then, nor has any experience since then given us the same results. When we returned home, I researched that fact and found that other parents with children on the spectrum have also noted things such as "first eye contact", or "first words", or "first time she used the potty" as occuring right there at Disney.
I am trying not to get my hopes up too high, but I have already seen an increase in Noah's communication skills as he is starting to get excited about our Disney trip. He has a count down calendar, and he talks daily about the characters he wants to meet. My hope is that he experiences the same progression of skills that he had last time. After all......Disney is Magic.
I eat my words. Who am I to judge?? I don't know the situation. What if that Father felt his teenage son slipping away into a world of drugs, and this time to reconnect saved his son? What if that Mother was just given 6 months to live because of breast cancer, and the family was taking her on the vacation of her dreams, creating beautiful memories, while living out her final wish?
Now, here I am, planning a Disney vacation for February. No, the children do NOT have off school. Not a single day off. But we are going. We are taking them out of school (input gasps here) to go on a family vacation. What could possibly be the reason? How could this be more important than the incredible education they are receiving during these formative years?
Those who know me know that I certainly value education. Having Noah, however, has taught me that there are lessons in life that are just as important, if not more so, than reading, writing, and arithmetic. Our first family vacation to Disney was in 2006. (Picture below) It was Amazing. It was Wonderful. It was Magical. And.....it was in February, when the children were scheduled to be in school.
My explanation has a lot to do with his autism. Noah has difficulty with crowds, with heat, with overstimulation, and with waiting. Disney is less crowded in February, and the temperature is in the 70's. The conditions are perfect for his needs. When Noah is doing well, the whole family is relaxed. Therefore, the conditions are perfect for the whole family. We also connected as a family while there. This is so important when there is a sibling who is neurotypical. We were in a location that provided "equal" opportunities for BOTH children.
Here is another tidbit of information. Noah's language and social skills progressed greatly during the week we spent at Disney in 2006. We had never seen such progression of skills before then, nor has any experience since then given us the same results. When we returned home, I researched that fact and found that other parents with children on the spectrum have also noted things such as "first eye contact", or "first words", or "first time she used the potty" as occuring right there at Disney.
I am trying not to get my hopes up too high, but I have already seen an increase in Noah's communication skills as he is starting to get excited about our Disney trip. He has a count down calendar, and he talks daily about the characters he wants to meet. My hope is that he experiences the same progression of skills that he had last time. After all......Disney is Magic.
Wednesday, January 5, 2011
Getting Past Blame
This past Fall we took Noah to see a pediatric psychiatrist. I wanted to know more about medications. I needed reassurance that we are doing the best we can for Noah. The psychiatrist was complimentary, and reassuring. She also described different psychotropic drugs, how they work, the benefits, and the side effects. She shared our concern about the side effects of the Risperdal (weight gain mainly in the tummy). She also had a PLAN. This was what impressed us the most. She had ideas of when to increase and when to decrease the medication in order to manage the side effects. She also introduced another medication with less side effects. We left her office with smiles on our faces and new hope.
The new medication (Intuniv) worked well at 1 mg. We then increased it to 2 mg after two weeks, as planned. At that time, Noah's self-abusive behavior increased. He was hitting his head (HARD - it was painful to watch), pinching and scratching himself, hitting his hand against walls, and had an angry tone in his voice. We decided, without consulting the psychiatrist, to decrease the medication to 1 mg again. The self-abusive behavior decreased immediately. We felt good about our decision.
Last month we saw the psychiatrist again. I did not leave this appointment with a smile. I left with guilt and regret. The psychiatrist gently scolded us for stopping the medication she recommended. Evidently, there is a period of time when the body will resist the new medication. We needed to wait FOUR WEEKS to see the benefit. I could not bear to watch my child in such pain for a week. Now I am being asked to watch this for what may be up to a 4 week time frame?
She also looked right at me and stated, "You are a therapist, right?" She then went on to say that I would not be recommending to other parents what I am doing in my own home. She stated that Noah's anxiety is a mirror reflection of his Mother's anxiety. She said, "You need to stop being a Mother, and start being a therapist." OUCH! The main reason I have hired therapists in my home is so that I can concentrate on being Noah's MOTHER, not his therapist! I have been contemplating her comment for an entire month. I go between feeling hurt, insulted, and guilty to being angry with her statement.
Are there other mothers of children with ASD out there who feel like they need to be more of a therapist than a mother? How do you balance these two roles without feeling guilt?
The new medication (Intuniv) worked well at 1 mg. We then increased it to 2 mg after two weeks, as planned. At that time, Noah's self-abusive behavior increased. He was hitting his head (HARD - it was painful to watch), pinching and scratching himself, hitting his hand against walls, and had an angry tone in his voice. We decided, without consulting the psychiatrist, to decrease the medication to 1 mg again. The self-abusive behavior decreased immediately. We felt good about our decision.
Last month we saw the psychiatrist again. I did not leave this appointment with a smile. I left with guilt and regret. The psychiatrist gently scolded us for stopping the medication she recommended. Evidently, there is a period of time when the body will resist the new medication. We needed to wait FOUR WEEKS to see the benefit. I could not bear to watch my child in such pain for a week. Now I am being asked to watch this for what may be up to a 4 week time frame?
She also looked right at me and stated, "You are a therapist, right?" She then went on to say that I would not be recommending to other parents what I am doing in my own home. She stated that Noah's anxiety is a mirror reflection of his Mother's anxiety. She said, "You need to stop being a Mother, and start being a therapist." OUCH! The main reason I have hired therapists in my home is so that I can concentrate on being Noah's MOTHER, not his therapist! I have been contemplating her comment for an entire month. I go between feeling hurt, insulted, and guilty to being angry with her statement.
Are there other mothers of children with ASD out there who feel like they need to be more of a therapist than a mother? How do you balance these two roles without feeling guilt?
Saturday, August 14, 2010
Giving up or Giving in?
August already? Summers just fly by in Wisconsin. We have kept busy all summer, and have lots of memories recorded on film to prove it! Noah has enjoyed playing on the baseball team, has gone to cub scout camp, has traveled Wisconsin on a few family camp trips, and has celebrated his 11th birthday in July.
We "gave in" and finally agreed to increase the Risperidone medication in June. After many trials of numerous other medications, I discovered yet again, that the Risperidone is the ONLY medication that decreases the self-abusive behavior. I hesitated to increase it due to the side effect related to weight gain, which is exactly what is happening now. The pediatrician is not concerned about the weight gain because Noah is growing in height as well. I, on the other hand, am very concerned about the weight. Noah now weighs more than I do, and is only a few inches shorter than me. His tummy has bloated out due to the medication. I have increased his fiber and protein intake, hoping that he will feel full for longer periods of time. I hope this will work, especially when he starts back to school in September.
I have noticed Noah has also been demonstrating more anxiety about "unknown" future events over the last year. This year, he really perseverated on the toys he listed on his birthday list. He needed to know that the toys would be his, and he needed to know WHO was giving him WHICH toy and WHEN. When relatives would call and ask what he wanted for his birthday, he requested a particular toy from each person. Then he would pair that person with that toy each time he spoke about his upcoming birthday. Tantrums occurred when he was told that his gifts were a "surprise".
Finally, I "gave up" and just stated, "Yes, I am getting you Dug the dog from Up, and you will open your gift when you get back from camp." Then he was fine. Children and adults on the autism spectrum do not like surprises. They need to know what is going to happen next. This brings comfort, and eases any anxiety they may be experiencing. Words or phrases such as "Wait", "Surprise", "Maybe", "I don't know", and "Might" are very difficult to comprehend. They are too abstract, and do not predict the exact future.
Am I "giving up", or "giving in" when I increase medication that I disagree with, or go against social rules that state that birthday gifts should be a surprise? Maybe not. In life there are times when you have to put aside what you want and choose to do what is best for the other person. I would love for Noah to be able to stay calm and stop the self-abuse without medication, and I would love for him to be able to enjoy a "surprise" once in a while. But that is not best for NOAH. He needs his medication, and he needs to know what will happen in his future. As long as his needs are being met, I will assume that my decisions are sound. I just wish it were easier.
Subscribe to:
Posts (Atom)
