I have recently joined many different online Autism support groups. As I read some of the posts, I feel frustrated for many of the parents posting. So many of the complaints are members talking about the difficultly of their 3 years old with potty training, or their 2 and a half year old being out in public places. I know many, many people with Nero-typical children who struggle with potty training-at much older ages and most people who struggle with toddlers in public settings for any length of time. No one said raising children would be easy. Many of us- myself included, did not realize how difficult it could be.
Lexi was in a pull up at night time until a few months ago - at age 5. Many of her friends are still in pull ups at night. As one friend said the other day- there is a reason they make them in those sizes. Robbie was not fully potty trained until age 5 and had a pull up at night until 7 and a half. At that point, he did not want to wear a pull up. Fortunately, he was able to tell me. I think many times, we as parents are in a rush. We want results. That is how we have been programed. Parents- give yourself a break. It will happen.
Recently we have been dealing with increased aggression and extremely high anxiety. This means Robbie will have an angry voice and hit or kick things to show he is unhappy. Additionally , every request is responded to with yelling and extreme anxiety. For example- Robbie would you some waffles for breakfast? The response is a very loud "NOOOOOOOOO, Mommy!!!!! I am not hungry. No waffles!!!!! No waffles!! NOOOOOOOOO!!!!!" Only to hear " Mommy can I have some waffles?" a few minutes later. It's as if it takes that long for Robbie to process the information. This morning I asked Robbie if he wanted a banana- by showing him the fruit as I asked. His immediate answer was "Nooooooo!!!! No banana!! " Pause.... "Banana? No, Apple." just as I was washing one for he restated his request. " No apple, apple juice. I want apple juice." It was a reminder to me of how frustrating life must be for him. Sometimes he just can't get the request out at all and may be given something he does not want, with the inability to ask for what he truly desires. UGH, Can you imagine? Now , imagine this type of response for every question or request. Some days showers are met with the same anxiety and volume- others they are welcomed, as water has always been his happy place.
I am not going to pretend that life with Autism is easy. It is not. It is difficult. It is stressful. It is exhausting. But sometimes so is raising children overall. It is also wonderful. It is rewarding. It is the most important thing you can do. Life has ups and downs. Honestly some days are great and others make you want to crawl back under the covers. But again- Parents- give yourself a break! This is a marathon, not a sprint!
Saturday, June 21, 2014
Saturday, June 7, 2014
Why is Robbie different?
I knew it would happen. One day Lexi would ask why. Why is Robbie different? Why does Robbie have Autism? We have always been very open with Lexi about Autism, what it is and how it affects Robbie. However, I never wanted any of these conversations to hurt Robbie's feelings. Last night at dinner Lexi said " I hope Timmy does NOT have autism." Honestly- I may have said " me too" or just nodded my head. I caught myself and looked at Robbie- who covered his ears and put his head down. My heart broke. We hurt his feelings.
Later, I told Lexi that she can always talk to me or Daddy about Autism but we have to be careful not to hurt Robbie's feelings. She responded by saying- he didn't cry- so his feelings were not hurt. Such a tough concept for a 5 year old. The conversation continued with Lexi asking why Robbie is different, like the boys in her class with down syndrome. Why do we have to have Ms. Yevette ( Robbie's ABA therapist) over all the time? Why can't he be normal? Different is hard for me. I don't like different. Why can't he be like me... and Timmy? I reminded her about how much she loves her big brother. How much we all love him.
Toni Braxton- famous singer- who has a son on the spectrum was quoted as saying God punished her for having an abortion. The punishment was a child with Autism. How sad for her to feel that way. There has been a lot of discussion about her comments and while she was once a voice for Autism speaks, I hope she is no longer. Robbie is a gift. He is loved and I am thankful for him. However I will say - again, as I have posted this opinion- Autism does not define who Robbie is. It is a disability. If I could remove it- I would. Autism makes life harder for my son. He is funny and smart- and sometimes hard to understand. Sometimes he does not feel comfortable in his own skin. Someday, people will be cruel.
Recently a friend asked me how other kids treated Robbie- if they were accepting or excluding.. Again- a comment or question from a friend that took me by surprise.( And- again- as I write this blog, my hope is understanding.) The comment made me think- one of the many reasons I love the program Robbie is in is because he is safe. He is surrounded by those who understand. His classmates are on the spectrum. There is plenty of support staff. The school offers social skills- to - in my opinion- allow the "regular" kids an opportunity to interact with those on the spectrum. Those they see every day, walking down the halls, using the same bathrooms, and sharing a lunch and assembly with. I fear a time where Robbie is forced back into his district school- where there is no place for him. Where he is the only one. Where he is excluded. Where I may lose my cool if he not treated kindly.
As I write this- Lexi has looked over my shoulder asking about the contents on the page. She sees her name- multiple time- and popcorn words. I wonder if Robbie sees his name- and words he can recognize. He can not tell me- yet. He is 8 years old. Lexi can- she is 5.
While there has been much progression for Robbie in terms of language and communication, it can still be a challenge. Pictures are still helpful. Many times Robbie responds without really hearing what has been said. This morning Robbie had taken a bunch of loose change from a cup and put it into small ziplock bags. I told him he could keep the money but asked that he keep it far away from Timmy. Timmy is still at the age where he puts everything in his mouth. The response I got was yelling no and him throwing the bags all over the floor. Exactly what I did not want to happen. Honestly, I don't think he understood my request. He assumed he was in trouble for taking the money and putting it into bags. ( He has gotten in trouble before for taking multiple items and placing them in multiple baggies. It is wasteful and honestly, annoying because I end up having to put all the items back in their place and throwing away piles of baggies.) These types of exchanges are common. There is a lot of yelling- from Robbie and a bit of frustration at times from the rest of us.
Overall I am reminded to slow down. Take a deep breathe. Explain things more clearly to Robbie and remind Lexi that different is not bad. Different makes life interesting. What kind of world would we have if we were all exactly the same?? Boring!!!!!
Later, I told Lexi that she can always talk to me or Daddy about Autism but we have to be careful not to hurt Robbie's feelings. She responded by saying- he didn't cry- so his feelings were not hurt. Such a tough concept for a 5 year old. The conversation continued with Lexi asking why Robbie is different, like the boys in her class with down syndrome. Why do we have to have Ms. Yevette ( Robbie's ABA therapist) over all the time? Why can't he be normal? Different is hard for me. I don't like different. Why can't he be like me... and Timmy? I reminded her about how much she loves her big brother. How much we all love him.
Toni Braxton- famous singer- who has a son on the spectrum was quoted as saying God punished her for having an abortion. The punishment was a child with Autism. How sad for her to feel that way. There has been a lot of discussion about her comments and while she was once a voice for Autism speaks, I hope she is no longer. Robbie is a gift. He is loved and I am thankful for him. However I will say - again, as I have posted this opinion- Autism does not define who Robbie is. It is a disability. If I could remove it- I would. Autism makes life harder for my son. He is funny and smart- and sometimes hard to understand. Sometimes he does not feel comfortable in his own skin. Someday, people will be cruel.
Recently a friend asked me how other kids treated Robbie- if they were accepting or excluding.. Again- a comment or question from a friend that took me by surprise.( And- again- as I write this blog, my hope is understanding.) The comment made me think- one of the many reasons I love the program Robbie is in is because he is safe. He is surrounded by those who understand. His classmates are on the spectrum. There is plenty of support staff. The school offers social skills- to - in my opinion- allow the "regular" kids an opportunity to interact with those on the spectrum. Those they see every day, walking down the halls, using the same bathrooms, and sharing a lunch and assembly with. I fear a time where Robbie is forced back into his district school- where there is no place for him. Where he is the only one. Where he is excluded. Where I may lose my cool if he not treated kindly.
As I write this- Lexi has looked over my shoulder asking about the contents on the page. She sees her name- multiple time- and popcorn words. I wonder if Robbie sees his name- and words he can recognize. He can not tell me- yet. He is 8 years old. Lexi can- she is 5.
While there has been much progression for Robbie in terms of language and communication, it can still be a challenge. Pictures are still helpful. Many times Robbie responds without really hearing what has been said. This morning Robbie had taken a bunch of loose change from a cup and put it into small ziplock bags. I told him he could keep the money but asked that he keep it far away from Timmy. Timmy is still at the age where he puts everything in his mouth. The response I got was yelling no and him throwing the bags all over the floor. Exactly what I did not want to happen. Honestly, I don't think he understood my request. He assumed he was in trouble for taking the money and putting it into bags. ( He has gotten in trouble before for taking multiple items and placing them in multiple baggies. It is wasteful and honestly, annoying because I end up having to put all the items back in their place and throwing away piles of baggies.) These types of exchanges are common. There is a lot of yelling- from Robbie and a bit of frustration at times from the rest of us.
Overall I am reminded to slow down. Take a deep breathe. Explain things more clearly to Robbie and remind Lexi that different is not bad. Different makes life interesting. What kind of world would we have if we were all exactly the same?? Boring!!!!!
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