While leaving our favorite* (and only shoe store for Robbie) I was patting myself on the back for how calm I remained during our visit. After picking Robbie up from his after school social skills class, handing him his favorite snack (a way to keep him calm and happy) I explained that we were going to get him new shoes. Robbie has 1 pair of shoes. Sneakers. They are getting worn and I wanted to ensure his feet had not grown much since the fall- as he has certainly grown in height. "No shoes" he yelled. "I don't want shoes." Of course his 5 year old sister chimed in- "I'll get shoes, Mommy." She has more shoes than I do.
I proceeded to drive to Olly- our shoe store of choice. Robbie immediately yelled once we were in the parking lot- "no shoes, I don't want new shoes." I ignored the yelling and calmly parked the car. Once I had everyone out and baby in tow we began to walk towards the store. Robbie stopped twice, yelled no and I continued to walk- of course checking for on coming traffic. He followed and into the store we went. "No shoes mommy" as we entered the store. I searched the store for the familiar face that seems always to be there. The same saleswoman who has helped us for the last 3 years. Sees me, hears Robbie and knows the drill. We go back to the train, where feet are measured. Robbie, still under protest, takes off his shoes and puts his feet on the screen to be measured, while yelling "No!" Of course the computer is giving her problems, which she calmly works through. After discussing whether of not we should try to move Robbie to the other train, where Lexi had just gotten her feet measured and the computer was working, I made the decision to keep him where he was. I explained in my familiar mildly sarcastic but all too true voice- this is where Robbie gets his feet measured. He always goes to the same train station, there is no other. She smiles and gets what I am saying. Takes the measurement without saving our information to the system. Amazingly, his feet have not grown. She then asks what type of shoes I am looking for. Laces or Velcro, particular color, etc. I ask Robbie what he would like, trying to show him really cool bright blue shoes with laces. "No shoes. I don't want shoes. My shoes. You can't have my shoes" as he puts his old shoes back on his feet. Then, I understand his anxiety. He likes his shoes. They are his. He is afraid they will be taken and he will be given some new, different shoes, that are not his. I look at the sales women and say- "you know the drill, same shoes." She adds- " just a half size bigger." And then of course Lexi begs for new shoes as well. Sparkly new shoes. How can I say no. The sales women takes the two boxes to the register. Lexi asks who the other box is for- knowing full well they are Robbie's shoes. I explain to her- she knows who's shoes they are and please keep it to yourself to avoid a meltdown. Robbie is still saying "no shoes" but at least not yelling it.
Our purchase is rung up. She takes my expired coupon and enters in my rewards number, saving me $20 from the $100 purchase. Hands me the bags, looks me in the eye to say thank you. A look that does not show pity or frustration, just thanks for the business and understanding.
As I go over this interaction in my mind I realize- it is not me that deserves a pat on the back- but her. For the past 3 plus years she has helped make a difficult situation, a little less difficult. There was a time when Robbie stepped in tar at school and ruined his shoes. I called the store to ask them to hold a pair of the same shoes for him. To my dismay, they were discontinued. This woman found a pair so similar, Robbie did not fall to pieces when I gave them to him. It's these small acts of kindness that help.
I want to thank those who do see us- Parents of special needs children- for who we are. Just parents with a little more on our plates than most. Thank you for making what is an easy situation for most- easier for us, for me, for Robbie. I am a loyal customer because of you!
Wednesday, January 29, 2014
Tuesday, January 21, 2014
Moving Forward
One of my favorite television shows is Parenthood. One of the dynamics on the show is a family who has a son with Asperger's. (They also had a surprise "bonus" child) Last week the episode explored their worries and hopes for his future. This , of course, is something Rob and I think about for Robbie. In the show an older character learns he has Asperger's as well. He is a photographer and is professionally successful while he struggles in his personal life. They discuss the positives and negatives about this man's life. He is independent, has a career and has had meaningful relationships. However , these relationships do not last. A failed marriage, an estranged daughter, etc.
Robbie is not Asperger's but Asperger's is part of the spectrum. A friend forwarded a video developed by a young adult with Asperger's. He spoke about how difficult it can be to get through the day. Many times that was all the energy he had- to just get through the day. This is why many on the spectrum like things in a certain order and why everything has its place. This makes things a little easier for them. So when Robbie was following me around the house yesterday with a needle and thread to sew a pillow case that had ripped I decided to stop what I was doing and complete the task for him. These are the situations that could turn into meltdowns, but can be avoided.
Robbie also pointed out the obvious to me on Saturday. He is a boy. I am leery of letting him go to public restrooms on his own- for a variety of reasons. At one of Rob's basketball games, Robbie had to use the bathroom. I grabbed his hand and passed the men's room, heading toward the ladies room. He said "No, that one." pointing to the men's room. I told him I couldn't go in that bathroom because I am a girl , not a boy. He said " I'm not a girl, I'm a boy." It made me pause. My baby boy is growing up and becoming more independent. I let him go to the boys bathroom on his own, while waiting outside of the door. I welcome him doing things like pouring his own juice and putting his plate in the sink. Now I am going to have to start allowing him to do more of what almost 8 year olds do. But, what is that? I honestly have no idea. I have no idea where he should be in relation to an neurotypical child.
A fellow blogger wrote about his ten year old daughter. He was taking her to school. She was scripting her morning routine when they came upon two fellow classmates. The girls were chatting about ten year old girl stuff. They never acknowledged his daughter and she never acknowledged them. This made him realize how far behind his daughter is socially and what that may mean long term. It is these moments , good or bad, that remind you how different your child is from the norm.
We are fortune that Robbie is in a self contained classroom, which means all the kids are on the spectrum and the teacher to child ratio is 1 to 1 or better. This also means there are no models of behavior for Robbie or me. Still, I am confident he is in the right place. Maybe one day he will be able to mainstream for a portion of the day, but right now I know he is safe from exclusion and getting his feeling hurt.
One of the aids and his teacher has told us how funny he is and how much he adds to the class.
At dinner last night, we experienced this. Robbie was fake crying, as he often does. He said "Robbie is crying." I asked why and he replied "Because I won't ever be president." We all laughed, including Robbie. It was a line from a movie, but he was trying to be funny and succeeded! I told him he probably will not ever be president. However, can you imagine having a president on the spectrum. One who would not lie, cheat or steal because those behaviors go against their very nature! It could be amazing!! One can dream........................
Robbie is not Asperger's but Asperger's is part of the spectrum. A friend forwarded a video developed by a young adult with Asperger's. He spoke about how difficult it can be to get through the day. Many times that was all the energy he had- to just get through the day. This is why many on the spectrum like things in a certain order and why everything has its place. This makes things a little easier for them. So when Robbie was following me around the house yesterday with a needle and thread to sew a pillow case that had ripped I decided to stop what I was doing and complete the task for him. These are the situations that could turn into meltdowns, but can be avoided.
Robbie also pointed out the obvious to me on Saturday. He is a boy. I am leery of letting him go to public restrooms on his own- for a variety of reasons. At one of Rob's basketball games, Robbie had to use the bathroom. I grabbed his hand and passed the men's room, heading toward the ladies room. He said "No, that one." pointing to the men's room. I told him I couldn't go in that bathroom because I am a girl , not a boy. He said " I'm not a girl, I'm a boy." It made me pause. My baby boy is growing up and becoming more independent. I let him go to the boys bathroom on his own, while waiting outside of the door. I welcome him doing things like pouring his own juice and putting his plate in the sink. Now I am going to have to start allowing him to do more of what almost 8 year olds do. But, what is that? I honestly have no idea. I have no idea where he should be in relation to an neurotypical child.
A fellow blogger wrote about his ten year old daughter. He was taking her to school. She was scripting her morning routine when they came upon two fellow classmates. The girls were chatting about ten year old girl stuff. They never acknowledged his daughter and she never acknowledged them. This made him realize how far behind his daughter is socially and what that may mean long term. It is these moments , good or bad, that remind you how different your child is from the norm.
We are fortune that Robbie is in a self contained classroom, which means all the kids are on the spectrum and the teacher to child ratio is 1 to 1 or better. This also means there are no models of behavior for Robbie or me. Still, I am confident he is in the right place. Maybe one day he will be able to mainstream for a portion of the day, but right now I know he is safe from exclusion and getting his feeling hurt.
One of the aids and his teacher has told us how funny he is and how much he adds to the class.
At dinner last night, we experienced this. Robbie was fake crying, as he often does. He said "Robbie is crying." I asked why and he replied "Because I won't ever be president." We all laughed, including Robbie. It was a line from a movie, but he was trying to be funny and succeeded! I told him he probably will not ever be president. However, can you imagine having a president on the spectrum. One who would not lie, cheat or steal because those behaviors go against their very nature! It could be amazing!! One can dream........................
Thursday, January 16, 2014
The good the bad and the exhausted
There is a wonderful story of pure kindness floating around Facebook that actually made it to the news. A woman and her autistic daughter were on an airplane. The mother was dreading the flight and of course prepared herself for the worst. Then the best happened. The passenger sitting beside her daughter did not shy away from being called "daddy." He did not look away annoyed or worse, look at the mother with those judgemental eyes that say" you are a bad parent. control your child." Instead he acknowledged the little girl. He let he call him daddy. He played with her.
My sister in law passed this story along to me and I also saw it on the news. It made me smile. There is kindness in the world. A simple kind gesture meant the world to this family.
There is also a horrible story where lack of compassion take the lead. A mother took her 23 year old son who has autism to the movies. When the preview began the boy, or man as he appeared to the other patrons, made noise. He was bothered by the sound and had a hard time adjusting. It seems this happens to this boy and generally he calms down as the movie begins. On this day he did not get the chance. Other movie goers began to yell at the woman. They insisted she "shut him up". They made it so unbearable that she decided to leave. They applauded as she began to exit the theatre. This scenario breaks my heart for this family. But it does also make me remember many times when I have taken Robbie to the movies. One time in particular was an Autism speaks event. The entire theatre was full of those on the spectrum and their families. The volume was lowered and the lights dimmed, but not completely. I'll be honest.......it was not enjoyable.... for me. There was a lot of extra noise. A lot of "eeee's". A lot of getting up from the seat and jumping. The wonderful part of the event was the fact that it was a judgement free zone. I wish there were more opportunities like this for families with autism, who need it or could benefit. We are lucky. Robbie loves movies and we have a wonderful theatre near us with large rows and huge reclining seats. He can get up if needed. That being said I do try to be strategic about when we go to the movies and where we sit. But it has gotten much easier over the years. This is most likely because we have practiced. We were given the chance.
The exhausted would be referring to myself, my husband and Robbie. It was not long ago I was
happily rattling off the amount of "good nights" we'd had. A good night could be one where Robbie wakes up a few times even, but falls back to sleep, or stays quietly in bed. A bad night is one where Robbie is awake and disruptive. Continually moving, running, jumping, kissing, hitting, kicking, talking , yelling...............generally waking up the entire household and being a pain in the behind. He will go to sleep at 9pm after taking his sleep meds and then wake up at midnight or 1am. He will remain awake until 5am. At that time he falls asleep- or more accurately passes out from exhaustion. When I have to wake him up at 7am- he is not a happy camper. We have had a few weeks of too many bad nights. A call to the neurologist/ developmental pediatrician is on the immediate agenda.
Round and round we go it seems.
To end on a lighter note with more good. This week I had the first real phone conversation with my son. I was out of town for work and called home. I asked him a few brief questions and he answered, appropriately. He is 2 months shy of 8 years old. It is a real triumph.
Additionally we received a note from Robbie's teacher explaining a scenario that occurred in the hallway. Robbie was walking with his teacher and came across a little girl his age or slightly older in the hallway. He stopped dead in his tracks, looked at her and said " wow, cute!" His teacher thought it was hysterical. She does laugh with him often.
I was laughing on the phone to my best friend explaining this story and said thank god for small favors. I know we will be blessed with infinitely more good, fight our way through more bad and honestly, isn't everyone exhausted these days!!!
My sister in law passed this story along to me and I also saw it on the news. It made me smile. There is kindness in the world. A simple kind gesture meant the world to this family.
There is also a horrible story where lack of compassion take the lead. A mother took her 23 year old son who has autism to the movies. When the preview began the boy, or man as he appeared to the other patrons, made noise. He was bothered by the sound and had a hard time adjusting. It seems this happens to this boy and generally he calms down as the movie begins. On this day he did not get the chance. Other movie goers began to yell at the woman. They insisted she "shut him up". They made it so unbearable that she decided to leave. They applauded as she began to exit the theatre. This scenario breaks my heart for this family. But it does also make me remember many times when I have taken Robbie to the movies. One time in particular was an Autism speaks event. The entire theatre was full of those on the spectrum and their families. The volume was lowered and the lights dimmed, but not completely. I'll be honest.......it was not enjoyable.... for me. There was a lot of extra noise. A lot of "eeee's". A lot of getting up from the seat and jumping. The wonderful part of the event was the fact that it was a judgement free zone. I wish there were more opportunities like this for families with autism, who need it or could benefit. We are lucky. Robbie loves movies and we have a wonderful theatre near us with large rows and huge reclining seats. He can get up if needed. That being said I do try to be strategic about when we go to the movies and where we sit. But it has gotten much easier over the years. This is most likely because we have practiced. We were given the chance.
The exhausted would be referring to myself, my husband and Robbie. It was not long ago I was
happily rattling off the amount of "good nights" we'd had. A good night could be one where Robbie wakes up a few times even, but falls back to sleep, or stays quietly in bed. A bad night is one where Robbie is awake and disruptive. Continually moving, running, jumping, kissing, hitting, kicking, talking , yelling...............generally waking up the entire household and being a pain in the behind. He will go to sleep at 9pm after taking his sleep meds and then wake up at midnight or 1am. He will remain awake until 5am. At that time he falls asleep- or more accurately passes out from exhaustion. When I have to wake him up at 7am- he is not a happy camper. We have had a few weeks of too many bad nights. A call to the neurologist/ developmental pediatrician is on the immediate agenda.
Round and round we go it seems.
To end on a lighter note with more good. This week I had the first real phone conversation with my son. I was out of town for work and called home. I asked him a few brief questions and he answered, appropriately. He is 2 months shy of 8 years old. It is a real triumph.
Additionally we received a note from Robbie's teacher explaining a scenario that occurred in the hallway. Robbie was walking with his teacher and came across a little girl his age or slightly older in the hallway. He stopped dead in his tracks, looked at her and said " wow, cute!" His teacher thought it was hysterical. She does laugh with him often.
I was laughing on the phone to my best friend explaining this story and said thank god for small favors. I know we will be blessed with infinitely more good, fight our way through more bad and honestly, isn't everyone exhausted these days!!!
Monday, January 6, 2014
Yes Virginia, there is a Santa Claus
Christmas has always been a magical time for me. My parents (especially my Dad) still get excited over the holiday. We had many special traditions and were very lucky that Santa always came to visit.(I think he came until I was 29.) As an adult I still believe in the magic of Christmas. Rob and I were engaged on Christmas eve, many years ago. It is a time where most people reach out to catch up , at least with a picture or short note. A time to relive your childhood and believe in something pure. A time to give.
A week or so before Christmas I was in a hair salon and over heard a conversation between a few women. They were discussing how Santa only leaves 1 gift in their respective houses and they "the parents" leave many more. The reason being "Why should Santa get the credit? I am the one buying the gifts." I understand many homes have various traditions. In many homes Santa brings the one big gift that had been requested. But as the season has come and gone I have heard many similar comments regarding getting the credit. Really?? I feel like shouting. My issue is feeling as if you have to get credit for the gifts. Could our society really have come to that conclusion. Give only for the credit? Charity work is only worth it if you get something in return? And what about the magic of Christmas for your children?
There is no monetary value for the look on Robbie and Lexi's face when they look down from the top of the stairs and see presents for them under the tree. And nothing will beat my husband, who has in the past been very stressed out this time of year due to his grueling basketball schedule, getting so excited to decorate the tree with candy canes ( our newest tradition) and put the gifts under the tree. The reward- seeing the excitement on our childrens' faces, knowing Santa had come.
How does this tie in with Autism? I saw a facebook posting today from Autism awareness. It said "People with Autism do not lie, do not cheat, do not play mind games." A parent of a student my husband taught recently said "Many with Autism are just pure, unspoiled." This of course can be tough as our children on spectrum grow into teenagers and adults, but as children they will believe longer. And so again- yes Virginia, there is a Santa Claus- at least in the Hummel house for many more years to come, (I hope)
A week or so before Christmas I was in a hair salon and over heard a conversation between a few women. They were discussing how Santa only leaves 1 gift in their respective houses and they "the parents" leave many more. The reason being "Why should Santa get the credit? I am the one buying the gifts." I understand many homes have various traditions. In many homes Santa brings the one big gift that had been requested. But as the season has come and gone I have heard many similar comments regarding getting the credit. Really?? I feel like shouting. My issue is feeling as if you have to get credit for the gifts. Could our society really have come to that conclusion. Give only for the credit? Charity work is only worth it if you get something in return? And what about the magic of Christmas for your children?
There is no monetary value for the look on Robbie and Lexi's face when they look down from the top of the stairs and see presents for them under the tree. And nothing will beat my husband, who has in the past been very stressed out this time of year due to his grueling basketball schedule, getting so excited to decorate the tree with candy canes ( our newest tradition) and put the gifts under the tree. The reward- seeing the excitement on our childrens' faces, knowing Santa had come.
How does this tie in with Autism? I saw a facebook posting today from Autism awareness. It said "People with Autism do not lie, do not cheat, do not play mind games." A parent of a student my husband taught recently said "Many with Autism are just pure, unspoiled." This of course can be tough as our children on spectrum grow into teenagers and adults, but as children they will believe longer. And so again- yes Virginia, there is a Santa Claus- at least in the Hummel house for many more years to come, (I hope)
Saturday, December 21, 2013
Fear
I am afraid- very afraid. My sweet baby boy ..... is showing signs of autism. The same signs that we missed with Robbie. The same signs that early intervention missed with Robbie. The same signs our pediatrician does not see.......yet? Believe me when I say, I pray I am wrong. Unfortunately my gut and my husbands says otherwise. What are the signs? I am going to try to post a link to an incredibly helpful autism program that shows the signs that are so often missed. I shed tears watching it, because I saw Robbie. So- here it is from the Hummel house. Timmy is a very happy, pleasant baby. His eye contact is good- says the pediatrician. The concerns are .... he moves a lot. His legs especially are going, going, going. He LOVES the jumpy swing that its in the doorway. His body gets tense very often. His focus gets lost. If I didn't know better I would think he was looking at me- my eyes- but really he is looking at my hair many times. It moves. He is affected by loud noises- very easily.. (Robbie was not/ is not affected by noise but it is a trait in many on the spectrum.)
Again, I hope and pray I am wrong. But fear that is not the case. The "correct" response to this challenge is to say " I know what I need to do" " Been there done that" and all of those responses are correct but here are a few others. "What happens when I am gone or too old to care for my special needs children?" " I don't want to put that ..... whatever you may call it.... on Lexi." My hope was , she would have a sibling to be with her through any tough decisions that needed to be made regarding Robbie when I am gone. And yes the truth is I know what steps to take if Timmy is on the spectrum but the reality is, those steps suck. The process sucks. The sense of loss sucks. The realization that the dreams you had for your child are probably not going to happen. Not the dreams of them playing professional sports, but the dreams of them having a productive happy life filled with friends and a family of their own.. Worst post ever during such a happy time of year..............definitely. And don't get me wrong. We are so excited for Christmas this year. 5 month. 5 years old and 7 years old are incredible ages for Santa. Believe me, it will be a magical year!! Pictures and videos for sure. And again I hope and pray we are wrong or over cautious but I fear we are not.
Again, I hope and pray I am wrong. But fear that is not the case. The "correct" response to this challenge is to say " I know what I need to do" " Been there done that" and all of those responses are correct but here are a few others. "What happens when I am gone or too old to care for my special needs children?" " I don't want to put that ..... whatever you may call it.... on Lexi." My hope was , she would have a sibling to be with her through any tough decisions that needed to be made regarding Robbie when I am gone. And yes the truth is I know what steps to take if Timmy is on the spectrum but the reality is, those steps suck. The process sucks. The sense of loss sucks. The realization that the dreams you had for your child are probably not going to happen. Not the dreams of them playing professional sports, but the dreams of them having a productive happy life filled with friends and a family of their own.. Worst post ever during such a happy time of year..............definitely. And don't get me wrong. We are so excited for Christmas this year. 5 month. 5 years old and 7 years old are incredible ages for Santa. Believe me, it will be a magical year!! Pictures and videos for sure. And again I hope and pray we are wrong or over cautious but I fear we are not.
Monday, December 16, 2013
Fullfilling potential...... and knowing when to laugh
Our biggest goal for Robbie- and all our kids- is to help them to reach their potential. Of course for a child on the spectrum this can be a little tricky. One aspect has been trying many sports or activities to see if any "stick." Soccer, (twice), gymnastics, swimming, scooter riding..........some things Robbie has enjoyed and others, well... not so much. One of the toughest aspects of any activity for Robbie has been focus.
Karate has been an idea I had toyed with, but never followed through. There is a special needs Karate class that meets Tuesdays at 6:30 in Marlton. The dilemma has been other commitments- speech, ABA or social skills at that time and /or the drive to marlton. ( It's not that far but at that time with other children it presents an additional challenge. )
I decided to give karate a shot locally, in a regular class and let the chips fall where they may. Robbie and I met with the instructor for a brief one on one session to see if he was even remotely interested. I showed him a few images online to prepare him and off we went. When Robbie walked into the facility his face lite up and he said "this is cool." The instructor showed him where to put his shoes and a few basic moves. Robbie was 100% engaged and followed every direction. He wanted to look at the weapons that hung on the wall. The instructor told him he would show him when he was done. The session was short but as we left, with Karate attire in hand, Robbie said "that was awesome." WHAT? Two full sentences. Complete engagement. A happy kid. What more could a parent ask for?
I knew going to a "real" class would present challenges, so our ABA therapist came with us. (Us being myself and all three kids- 4months, 5 years old and 7 year old Robbie. ) I also emailed the instructor let him know we'd be coming and voice some concern about the amount of students, noise, etc. When we arrived we watched the younger class finish up. Robbie was excited- jumping up and down. The room was crowded and I hoped it would clear out a bit for the next class. No such luck. Robbie changed into his karate attire and went on the floor with about 15 other kids. While he did his best to follow instruction, he was really lost. The group did jumping jacks. Robbie managed two before he went into full spin mode. Spinning in circles, mild flapping and saying eeeeeeeeeeeeeeee. A very kind women sitting next to me leaned and said she three special needs children, all of whom took karate. My response was "can you tell?" with a laugh. The best part of the experience was the smile on Robbie's face. He did his best to follow the routine, pushing his aid aside. Clearly he wanted to be part of the class on his own. He got through about half of the class and said "all done. " He changed back into his clothes and we watched the remainder of the class.
That was the first and last class he has participated in, so far. We have gone a few more times as Lexi is now interested and participates. I think the environment was too overwhelming for my boy. Happily the owner agreed to do a few one on one sessions with Robbie to see if he can get him comfortable with the routine. I am very interested in seeing how it pans out.
Honestly I was feeling a little stressed out by the whole "class" scenario. I didn't want anyone to make fun of my son and I didn't want him to be a major distraction to the rest of the class. However, looking back at the video made me laugh. He is spinning, flapping, not following direction, but has a huge smile on his face the entire time. These are the situations that I have to laugh at. There will undoubtedly be a million more times like this, but sometime things will work out. Who knows- maybe it will be the next time!!Fingers crossed!!
Karate has been an idea I had toyed with, but never followed through. There is a special needs Karate class that meets Tuesdays at 6:30 in Marlton. The dilemma has been other commitments- speech, ABA or social skills at that time and /or the drive to marlton. ( It's not that far but at that time with other children it presents an additional challenge. )
I decided to give karate a shot locally, in a regular class and let the chips fall where they may. Robbie and I met with the instructor for a brief one on one session to see if he was even remotely interested. I showed him a few images online to prepare him and off we went. When Robbie walked into the facility his face lite up and he said "this is cool." The instructor showed him where to put his shoes and a few basic moves. Robbie was 100% engaged and followed every direction. He wanted to look at the weapons that hung on the wall. The instructor told him he would show him when he was done. The session was short but as we left, with Karate attire in hand, Robbie said "that was awesome." WHAT? Two full sentences. Complete engagement. A happy kid. What more could a parent ask for?
I knew going to a "real" class would present challenges, so our ABA therapist came with us. (Us being myself and all three kids- 4months, 5 years old and 7 year old Robbie. ) I also emailed the instructor let him know we'd be coming and voice some concern about the amount of students, noise, etc. When we arrived we watched the younger class finish up. Robbie was excited- jumping up and down. The room was crowded and I hoped it would clear out a bit for the next class. No such luck. Robbie changed into his karate attire and went on the floor with about 15 other kids. While he did his best to follow instruction, he was really lost. The group did jumping jacks. Robbie managed two before he went into full spin mode. Spinning in circles, mild flapping and saying eeeeeeeeeeeeeeee. A very kind women sitting next to me leaned and said she three special needs children, all of whom took karate. My response was "can you tell?" with a laugh. The best part of the experience was the smile on Robbie's face. He did his best to follow the routine, pushing his aid aside. Clearly he wanted to be part of the class on his own. He got through about half of the class and said "all done. " He changed back into his clothes and we watched the remainder of the class.
That was the first and last class he has participated in, so far. We have gone a few more times as Lexi is now interested and participates. I think the environment was too overwhelming for my boy. Happily the owner agreed to do a few one on one sessions with Robbie to see if he can get him comfortable with the routine. I am very interested in seeing how it pans out.
Honestly I was feeling a little stressed out by the whole "class" scenario. I didn't want anyone to make fun of my son and I didn't want him to be a major distraction to the rest of the class. However, looking back at the video made me laugh. He is spinning, flapping, not following direction, but has a huge smile on his face the entire time. These are the situations that I have to laugh at. There will undoubtedly be a million more times like this, but sometime things will work out. Who knows- maybe it will be the next time!!Fingers crossed!!
Tuesday, November 26, 2013
The Drawbacks of Autism
I recently posted regarding the "benefits " of autism. Here is the other side of the coin. After having a great day with Robbie at Chuck E Cheese, when asked what his favorite game was, he could not answer. The entire ride to and from consisted of Robbie scripting Monsters, Inc. and Monsters University. This means running the movie lines through his head and repeating what he could. If there is a part he can not speak the actual words, he will make up a phrase and continue until he knows the language. When we came home Robbie could not describe his experience in any way to the rest of his family. When Lexi came home that day from going to the movies with Dad she gave me the complete run down of the entire movie. I spoke to his home therapist and her response was " recall is tough for these kids. After the event is over recalling specifics tends not to happen because- the event is over. He may not be able to recall events until he is a teenager."
Additionally while at Chuck E Cheese there was a bit of stimming behavior. Rob became obsessed with a Jurassic Park game. "Dinosaur game, Dinosaur game, Dinosaur game" and then the jumping up and down, mild flapping and "EEEEEEE." There were other kids playing the dinosaur game at the time and one little girl- slightly younger than Robbie just stared at him. I don't think he noticed, but it made me sad for things to come.
Another challenge is never knowing what his behavior will like. If I expect he'll be fine in a situation, many times he is not and vice versa. A friend of ours was having a large party a few months ago. I expressed concern over the amount of people, not knowing most of them and the lack of escape routes. ( The party was over an hour away.) He'll be fine , was her response. I know that was meant to put me at ease- but the reality is he may not have been fine...............or he could have been. Again I know many parents experience the same struggles with neuro-typical kids- however I believe the melt downs and "bad" behavior for those on the spectrum is more severe. I also know we as a family need to be more brave and challenge ourselves to be in these situations. However sometimes we just don't have the energy and want to stay home.
Behavior modification is also different. Robbie's teacher is out for the week and had put a behavior plan in his clip board. His home therapist brought it to my attention by asking if Robbie had displayed bad behaviors at school? While there have a few bad days , for the most part he has come home with good reports. Good was circled. That means he was good, right? I began to wonder if the standard of behavior is slightly different for those with Autism. My kindergartner gets a blue star for "good" behavior and the stars change color as bad behavior escalates. However for her, bad behavior is talking while the teacher is talking. (I am not making light of that, you should NOT talk over your teacher.) For Robbie, bad behavior was defined as" rude, nasty or aggressive." Telling the teacher to leave, or repeating what they are saying. The standards seem a little different- because they have to be. Teachers and aids in Robbie's classroom (kindergarten through grade 4) are regularly taught how to contain a child. I doubt that strategy is used very often in Lexi's kindergarten class.
I guess my point is this, things are just different. I hope that is not used as an excuse for bad behavior however I hope it is used for understanding in certain situations. So if you see a child jumping up and down, flapping, saying "EEEEEEE", don't be alarmed. Smile. Smile at that child and please smile at that child's parents. They really do appreciate it.:)
Additionally while at Chuck E Cheese there was a bit of stimming behavior. Rob became obsessed with a Jurassic Park game. "Dinosaur game, Dinosaur game, Dinosaur game" and then the jumping up and down, mild flapping and "EEEEEEE." There were other kids playing the dinosaur game at the time and one little girl- slightly younger than Robbie just stared at him. I don't think he noticed, but it made me sad for things to come.
Another challenge is never knowing what his behavior will like. If I expect he'll be fine in a situation, many times he is not and vice versa. A friend of ours was having a large party a few months ago. I expressed concern over the amount of people, not knowing most of them and the lack of escape routes. ( The party was over an hour away.) He'll be fine , was her response. I know that was meant to put me at ease- but the reality is he may not have been fine...............or he could have been. Again I know many parents experience the same struggles with neuro-typical kids- however I believe the melt downs and "bad" behavior for those on the spectrum is more severe. I also know we as a family need to be more brave and challenge ourselves to be in these situations. However sometimes we just don't have the energy and want to stay home.
Behavior modification is also different. Robbie's teacher is out for the week and had put a behavior plan in his clip board. His home therapist brought it to my attention by asking if Robbie had displayed bad behaviors at school? While there have a few bad days , for the most part he has come home with good reports. Good was circled. That means he was good, right? I began to wonder if the standard of behavior is slightly different for those with Autism. My kindergartner gets a blue star for "good" behavior and the stars change color as bad behavior escalates. However for her, bad behavior is talking while the teacher is talking. (I am not making light of that, you should NOT talk over your teacher.) For Robbie, bad behavior was defined as" rude, nasty or aggressive." Telling the teacher to leave, or repeating what they are saying. The standards seem a little different- because they have to be. Teachers and aids in Robbie's classroom (kindergarten through grade 4) are regularly taught how to contain a child. I doubt that strategy is used very often in Lexi's kindergarten class.
I guess my point is this, things are just different. I hope that is not used as an excuse for bad behavior however I hope it is used for understanding in certain situations. So if you see a child jumping up and down, flapping, saying "EEEEEEE", don't be alarmed. Smile. Smile at that child and please smile at that child's parents. They really do appreciate it.:)
Subscribe to:
Posts (Atom)
.JPG)