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)
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