Saturday, December 19, 2015
Ebbs and flows.........
When someone hits you with the full intention of doing you bodily harm, it hurts. When it's someone you love not only does it hurt physically but emotionally in a place deep down inside. Imagine the person harming you was your child.
Robbie has always been a kind soul. Sensitive and loving. As I may have mentioned in another post, the aggressive behavior has really thrown me for a loop. On one hand I understand the frustration he feels. I had a dream/ nightmare a few weeks ago. I was in a strange yet familiar country. I was trying to get home. I asked for help, but no one could understand me. They simply walked by. I ran in what seemed like circles yet could not find my way. I became scared. So scared that it woke me up. I felt for Robbie more deeply than ever at that moment in the middle off the night.
Yet, when he becomes violent, I have a hard time feeling for him. At times the outbursts are as simple as " no you can't watch this movie upstairs because it's a blue ray. Our blue ray player is downstairs, you can watch it there. On the bigger TV." Hitting, kicking, scratching. I'm fairly sure he stopped listening after he heard no.
Things have improved from changes in medication. The third SSRI ( selective serotonin retake inhibitor) or medication used to treat anxiety , we've tried seems to be helping. The meltdowns are less frequent but no less violent when they do occur. Lexi said " Robbie never hits me, so I can help." That is another conversation entirely. The meltdowns come quickly and I am never fully prepared.
School reports have improved and behavior in school has evened out. At home we still are struggling to get a handle on how to manage the outbursts when they happen. This weekend I have done exactly what Robbie's new behaviorist has suggested. Completely ignore it. Much of it is for attention however this weekend it seemed to intensify as I ignored. Sorry to my neighbors because as I ignored the yelling and went to take out the trash Robbie followed me and screamed the entire time. I will also say it is hard to ignore someone who is hitting you.
That being said I do agree it's hard to handle but I hate it when strangers say " I don't know how you do it." I will tell you how I do it, I am his mother. I will always love, protect and nurture him, even in the times I may not like him. Even in the times when I am having a tough time managing his behavior. Even when the frustration makes me cry and want to hit something myself. And yes , it is hard.
It does make me feel for my own mother. I remember how angry and hateful I was as a teenager. Even now I don't really know why I behaved that way but I do know , I was awful to her. Now being on the other side I do want to say , thank you Mom. Thank you for always being there for me, even when I made it very difficult. That's what I am trying to do now. Just be here.
Just be here, especially for the moments when Robbie , grabs my hand, looks me in the eyes and says " Mommy I love you." As he just did.
Monday, October 26, 2015
Great start to the week!!
" I love school." Says Robbie as we are on the swing set at 7:30am this morning. He has already had a bath, eaten breakfast and brushed his teeth. There has not been any whining,crying or aggressive outbursts. It was a great start to the week and lets face it, Monday's pretty much suck.
The weekend was busy with Halloween related activities and I really didn't think we'd get through it, but we did. The annual Halloween party at a friends went as well as could be expected. Rob took Robbie about 30 minutes before the party started, a coping ritual done every year. This allows Robbie to settle in before chaos begins. I arrive with Lexi and Timmy a few minutes after the official start time to find Robbie quietly playing with some toys in the family room. Robbie spent most of the time stimming outside, where we were, and eating sugary cookies. He did not want to go on the gigantic slide that was rented from bounce U. I was a bit surprised at first because Robbie loves Pump it up/ bounce U but then remembered he has not gotten in any other bounce houses or slides outside of the facility itself in a few years. This makes sense to me as Robbie tends to compartmentalize many things. For example I have never heard my son read yet he reads in school. That is the explanation. Reading is done in school, not at home. In the same token, sliding on a large inflatable slide is done at bounce u or pump it up, not at a house party.
Robbie did not want to wear a costume, which has been pretty typical for him at Halloween. He'll pick one out and wear it before or after Halloween but most years not during the actual day or anything associated with it. I took Robbie home about 40 minutes before the end of the party as everyone makes there way to the parade in Medford. We have never even attempted the parade. Apparently it is amazing, but all we think about is the crowd and the noise and of course how that would affect Robbie. So we skip it.
Sunday we attended a safe trick or treat at my husbands school. We have gone for the last 3 years as Rob has worked a station with his basketball team to hand out candy. Robbie wavered between wanting to wear his costume and wanting to stay in his pajamas. He also yelled " I don't want candy" as I explained he would be able to get lots of candy. This is a statement I ignored. Robbie LOVES candy. He decided he did want to come. He did want to wear his costume. He did in fact want candy. I wrestled all 3 into the car as Timmy began to state he did not want candy. Again, a statement I ignored as he too, loves candy. We pulled into the parking lot and Robbie started screaming that he did not want to go in. Again, this wavering back and forth happens often. Lexi and I both explained that we'd go in, see Daddy and come home. That finally seemed to work and I held him close to my side as we walked toward the door. We had to stop twice to breathe and give a deep hug. The next 2 hours were spent collecting candy, handing out candy and for Robbie, eating candy. Robbie ate an unbelievable amount of candy. That evening thing seemed very "normal" for our family. We ate dinner. The kids worked on a craft project. They watched a movie. Robbie ran back and forth a million times saying "eeeeeeeee." Robbie jumped up and down, flapped his hands and was loudly stimming. While I can't say the loud stimming noise was not a bit distracting, annoying even. I can say the lack of anger and aggression was awesome. Fingers crossed for a good week for all!!!!
The weekend was busy with Halloween related activities and I really didn't think we'd get through it, but we did. The annual Halloween party at a friends went as well as could be expected. Rob took Robbie about 30 minutes before the party started, a coping ritual done every year. This allows Robbie to settle in before chaos begins. I arrive with Lexi and Timmy a few minutes after the official start time to find Robbie quietly playing with some toys in the family room. Robbie spent most of the time stimming outside, where we were, and eating sugary cookies. He did not want to go on the gigantic slide that was rented from bounce U. I was a bit surprised at first because Robbie loves Pump it up/ bounce U but then remembered he has not gotten in any other bounce houses or slides outside of the facility itself in a few years. This makes sense to me as Robbie tends to compartmentalize many things. For example I have never heard my son read yet he reads in school. That is the explanation. Reading is done in school, not at home. In the same token, sliding on a large inflatable slide is done at bounce u or pump it up, not at a house party.
Robbie did not want to wear a costume, which has been pretty typical for him at Halloween. He'll pick one out and wear it before or after Halloween but most years not during the actual day or anything associated with it. I took Robbie home about 40 minutes before the end of the party as everyone makes there way to the parade in Medford. We have never even attempted the parade. Apparently it is amazing, but all we think about is the crowd and the noise and of course how that would affect Robbie. So we skip it.
Sunday we attended a safe trick or treat at my husbands school. We have gone for the last 3 years as Rob has worked a station with his basketball team to hand out candy. Robbie wavered between wanting to wear his costume and wanting to stay in his pajamas. He also yelled " I don't want candy" as I explained he would be able to get lots of candy. This is a statement I ignored. Robbie LOVES candy. He decided he did want to come. He did want to wear his costume. He did in fact want candy. I wrestled all 3 into the car as Timmy began to state he did not want candy. Again, a statement I ignored as he too, loves candy. We pulled into the parking lot and Robbie started screaming that he did not want to go in. Again, this wavering back and forth happens often. Lexi and I both explained that we'd go in, see Daddy and come home. That finally seemed to work and I held him close to my side as we walked toward the door. We had to stop twice to breathe and give a deep hug. The next 2 hours were spent collecting candy, handing out candy and for Robbie, eating candy. Robbie ate an unbelievable amount of candy. That evening thing seemed very "normal" for our family. We ate dinner. The kids worked on a craft project. They watched a movie. Robbie ran back and forth a million times saying "eeeeeeeee." Robbie jumped up and down, flapped his hands and was loudly stimming. While I can't say the loud stimming noise was not a bit distracting, annoying even. I can say the lack of anger and aggression was awesome. Fingers crossed for a good week for all!!!!
Friday, October 23, 2015
Autism takes
This statement may sound a bit harsh, but Autism takes. In the beginning Autism takes away hopes and dreams. As time goes on and your child grows up and matures a bit, some hope returns. Shortly after, it is taken away again. Rinse, repeat, rinse, repeat , if you catch my drift. Just about the time I feel like I really have a handle on things, something comes crashing down. Just as Emily Perl Kingsley says, you're not going to Italy, which you had prepared for, you are going to Holland. Or even more perfectly stated by Rachel, a fellow special needs mom, in her blog " The Kevin Chronicles" you're suddenly in the club that No One Wants To be a Member of Including the Members of This club, club.
Lately for me, it has been aggression. Robbie is so angry. Anything can set him off. It is affecting the whole family. We've also experienced some regression. For example medicine- we had gotten to the point where Robbie would take cough medicine for a cough. Robbie would take headache medicine for a headache. Robbie would take his nightly medication with out argument. Now, it is all a battle that we are not winning. Almost any outing or activity that was once enjoyable is now stressful. I picked Robbie up early from school so we could go to his book fair and buy books for himself and his siblings. Something we have done the past two years. Robbie was happy to see me yet as we entered the library he became agitated. He picked up a book and when I suggested we keep looking but hold on to it he began screaming at the top of his lungs. The next stop was to pick up brother at daycare. Again something we've done many times. As we pulled in the parking lot he again became agitated. I had a sinking feeling as it was still nap time inside for the little ones. I explained that we needed to pick up Timmy and he could either wait in the car which I've never offered but feared the screaming episode of the library or come quietly with me. He chose to come with me but started to become loud as soon as we touched the door. His volume increased as we entered the building. Again, this is the time of day where most of the children are still napping and I creep in to pick Timmy up to ensure we get Lexi on time. The feeling of control is gone and that feeling of embarrassment is back. To be clear, the embarrassment is not from Robbie's autism but from your inability to have any control over your child, who once was somewhat under control. You knew when and why the meltdowns were to occur. He is not a toddler. This is not a new diagnosis. After years of struggle and daily tears, this should get easier, or at least not harder.
And then come the questions. Is Robbie in a new school? No. Does Robbie have a new teacher? No Is Robbie in a new classroom? No. His child study team think it could be due to hormones and behaviors. Did you know those on the spectrum tend to go through puberty earlier than their neuro- typical peers? Neither did I, but apparently so, says his teachers. So again, what do we do.
1) Tomorrow a new Behaviorist is coming to develop a program.
2) New medications begin as soon as we can get blood work done.
3) I know this is a bump in the road or the journey of autism and we will move forward, but it sucks.
Lately for me, it has been aggression. Robbie is so angry. Anything can set him off. It is affecting the whole family. We've also experienced some regression. For example medicine- we had gotten to the point where Robbie would take cough medicine for a cough. Robbie would take headache medicine for a headache. Robbie would take his nightly medication with out argument. Now, it is all a battle that we are not winning. Almost any outing or activity that was once enjoyable is now stressful. I picked Robbie up early from school so we could go to his book fair and buy books for himself and his siblings. Something we have done the past two years. Robbie was happy to see me yet as we entered the library he became agitated. He picked up a book and when I suggested we keep looking but hold on to it he began screaming at the top of his lungs. The next stop was to pick up brother at daycare. Again something we've done many times. As we pulled in the parking lot he again became agitated. I had a sinking feeling as it was still nap time inside for the little ones. I explained that we needed to pick up Timmy and he could either wait in the car which I've never offered but feared the screaming episode of the library or come quietly with me. He chose to come with me but started to become loud as soon as we touched the door. His volume increased as we entered the building. Again, this is the time of day where most of the children are still napping and I creep in to pick Timmy up to ensure we get Lexi on time. The feeling of control is gone and that feeling of embarrassment is back. To be clear, the embarrassment is not from Robbie's autism but from your inability to have any control over your child, who once was somewhat under control. You knew when and why the meltdowns were to occur. He is not a toddler. This is not a new diagnosis. After years of struggle and daily tears, this should get easier, or at least not harder.
And then come the questions. Is Robbie in a new school? No. Does Robbie have a new teacher? No Is Robbie in a new classroom? No. His child study team think it could be due to hormones and behaviors. Did you know those on the spectrum tend to go through puberty earlier than their neuro- typical peers? Neither did I, but apparently so, says his teachers. So again, what do we do.
1) Tomorrow a new Behaviorist is coming to develop a program.
2) New medications begin as soon as we can get blood work done.
3) I know this is a bump in the road or the journey of autism and we will move forward, but it sucks.
Monday, October 12, 2015
Art class
I ran into Robbie's art teacher this weekend. Robbie had missed art last week due to his bus being very late which has him out of sorts. I apologized for his missing the class and not reaching out to her sooner. Next she began by saying she had wanted to talk to me. Immediately my heart sunk as I assumed it meant Robbie was being disruptive during class however that is not what she said. She asked if it was ok for her to discuss Robbie's autism diagnosis with other parents in the class. She explained that Robbie was fine in class, a bit of scripting dialogue and asking for hugs from her but no disruptions. I exhaled. Robbie could continue art class as he has been doing for the past 6 sessions. Robbie really enjoys art. It's the only activity outside of school that has stuck. I offered to draft a letter she could use to help explain Robbie/ autism and send out if she wished. After discussing this scenario with my husband, here is the letter we came up with. And yes, I cried through most of it. Feel free to offer feedback.
Dear Other Parents in Robbie’s Art class,
I wanted to introduce Robbie to you and your child as he does not have the ability to do so himself. Robbie was diagnosed with Autism Spectrum Disorder at the age of three. People with autism have difficulty in areas of social interaction, communication and repetitive interests or behaviors. While those with autism have many similarities, each is also unique in many ways. Robbie likes hugs and touch. Robbie is verbal but may be hard to understand as much of his speech is linked to movie references or TV shows. Robbie also has a high level of anxiety due to his inability to communicate as others do. I write this letter to you and your child in hopes of providing some understanding as to why he may hug his teacher repeatedly or flap his arms in the air. He loves art class and it has been a blessing to find a friendly environment where he can be Robbie and enjoy the class.
I’ve drafted this letter just in case your child has discussed a student in the class that was either a bit weird or who did not follow all the rules the teacher has put in place- (hugs, interruptions, etc.)
If you have any questions, please free to reach out to myself or my Husband. We’ve been living in Medford lakes for 11 years and have 2 other neuro-typical children- 7 year old Lexi and 2 year old Timmy, as well.
Thanks!
Simonne Hummel
simonneprescott@hotmail.com
Dear Other Parents in Robbie’s Art class,
I wanted to introduce Robbie to you and your child as he does not have the ability to do so himself. Robbie was diagnosed with Autism Spectrum Disorder at the age of three. People with autism have difficulty in areas of social interaction, communication and repetitive interests or behaviors. While those with autism have many similarities, each is also unique in many ways. Robbie likes hugs and touch. Robbie is verbal but may be hard to understand as much of his speech is linked to movie references or TV shows. Robbie also has a high level of anxiety due to his inability to communicate as others do. I write this letter to you and your child in hopes of providing some understanding as to why he may hug his teacher repeatedly or flap his arms in the air. He loves art class and it has been a blessing to find a friendly environment where he can be Robbie and enjoy the class.
I’ve drafted this letter just in case your child has discussed a student in the class that was either a bit weird or who did not follow all the rules the teacher has put in place- (hugs, interruptions, etc.)
If you have any questions, please free to reach out to myself or my Husband. We’ve been living in Medford lakes for 11 years and have 2 other neuro-typical children- 7 year old Lexi and 2 year old Timmy, as well.
Thanks!
Simonne Hummel
simonneprescott@hotmail.com
Wednesday, September 23, 2015
I've always felt.........lucky
I've always felt lucky. Wonderful family, great friends and a pretty nice life. Even through the world of Autism, I've felt lucky. I'd hear stories from other Autism moms about taking all the furniture out of their children's bedrooms- in an effort to prevent self injury during a particularly difficult meltdown. Pad locking the food pantry and refridgerator because their children would constantly eat or drink. Those who are completely non verbal or those who show no affection and dislike touch or hugs. Those who want play team sports and be included with their neuro-typical peers, only to have their feelings hurt.
Lucky.
I would hear " I don't know how you do it." And get annoyed. ( honestly I am still unhappy with that comment. We all have challenges.)
Yet, he we are. In a place I did not see coming. My very sweet, kind, loving, affectionate boy has become volatile. I knew that sometime around the teenage years, things would be difficult. Now I fear they could get worse. ( fingers crossed they don't) As I hear him giggle in the next room with Dad and his little brother I can almost forget the screaming, crying, yelling, grabbing, hitting, kicking- breaking objects- scene of the other night. But I can't. The volatile behavior has escalated all summer. The hitting has begun to take place in school, at teachers. It has escalated at home to Dad and Mom. Robbie is struggling. We are struggling.
Many friends have asked if something changed? What do I think the cause is? Like the Autism logo, a puzzle piece, I think there are many things that play a part in the internal struggle Robbie is dealing with.
1)Too much sugar and junk food. This is always a struggle in our house as he won't stop at 1 soda- he sneaks 3 or 4. He can't take a small bowel of Doritos , he'll eat the entire bag.
2) Timmy- who is a toddler and gets a lot of attention. Lexi- who is a 7 year old girl and speaks very quickly and very often.
3) Change in routine/ environment. While he is going to the same school, with the same teacher, we are told this year is more challenging. There are a few new students as some have moved on.
4) I think- Robbie is also struggling with his communication limitations. Life is fast and loud. While he may not be holding his ears, noise bothers him. At dinner time he struggles to keep up with conversation. Although we try to slow things down and keep the noise level to a minimum , it's hard to do. Robbie also hears and understands everything. He knows he has autism and that his siblings do not. He know he is different.
What do we do now? Rob created a social story about not hitting, kicking, etc. We are moving things around in his room to give him a safer place to let out his frustrations. We are locking cabinets and limiting junk in the house. We are trying to slow down and be a bit more quiet. We are continuing to tell Robbie how much we love him and give him bear hugs. We are doing the best we can, just as Robbie is.
And 2 days later as I've let this post sit to reflect before posting, I've heard "I'm sorry Mom" more times than I can count and seemingly out of the blue. My reply is " I know Robbie, and I'm sorry too."
Lucky.
I would hear " I don't know how you do it." And get annoyed. ( honestly I am still unhappy with that comment. We all have challenges.)
Yet, he we are. In a place I did not see coming. My very sweet, kind, loving, affectionate boy has become volatile. I knew that sometime around the teenage years, things would be difficult. Now I fear they could get worse. ( fingers crossed they don't) As I hear him giggle in the next room with Dad and his little brother I can almost forget the screaming, crying, yelling, grabbing, hitting, kicking- breaking objects- scene of the other night. But I can't. The volatile behavior has escalated all summer. The hitting has begun to take place in school, at teachers. It has escalated at home to Dad and Mom. Robbie is struggling. We are struggling.
Many friends have asked if something changed? What do I think the cause is? Like the Autism logo, a puzzle piece, I think there are many things that play a part in the internal struggle Robbie is dealing with.
1)Too much sugar and junk food. This is always a struggle in our house as he won't stop at 1 soda- he sneaks 3 or 4. He can't take a small bowel of Doritos , he'll eat the entire bag.
2) Timmy- who is a toddler and gets a lot of attention. Lexi- who is a 7 year old girl and speaks very quickly and very often.
3) Change in routine/ environment. While he is going to the same school, with the same teacher, we are told this year is more challenging. There are a few new students as some have moved on.
4) I think- Robbie is also struggling with his communication limitations. Life is fast and loud. While he may not be holding his ears, noise bothers him. At dinner time he struggles to keep up with conversation. Although we try to slow things down and keep the noise level to a minimum , it's hard to do. Robbie also hears and understands everything. He knows he has autism and that his siblings do not. He know he is different.
What do we do now? Rob created a social story about not hitting, kicking, etc. We are moving things around in his room to give him a safer place to let out his frustrations. We are locking cabinets and limiting junk in the house. We are trying to slow down and be a bit more quiet. We are continuing to tell Robbie how much we love him and give him bear hugs. We are doing the best we can, just as Robbie is.
And 2 days later as I've let this post sit to reflect before posting, I've heard "I'm sorry Mom" more times than I can count and seemingly out of the blue. My reply is " I know Robbie, and I'm sorry too."
Monday, June 8, 2015
Things have been uneventful and why.........................................
A
very close family friend commented that things must be good because I had not
blogged recently. It made me pause. While I said I've just been really busy,
which is true. I was thinking about a few times I had tried only to be
interrupted by a toddler demanding my full attention, or a work commitment, or exhaustion. In truth, things have
been relatively eventful. However I do want
to thank all who came out to and supported the Miles of Hope 5k walk /run in April to benefit Autism Speaks. It was a fantastic day and over $7,000 was raised to support Autism awareness and research- obviously a cause very close to my heart.
to thank all who came out to and supported the Miles of Hope 5k walk /run in April to benefit Autism Speaks. It was a fantastic day and over $7,000 was raised to support Autism awareness and research- obviously a cause very close to my heart.
One of the reasons things have been relatively uneventful are with time things do get easier for the following reasons-
1) Acceptance- of the things Robbie can or will do and those either he can't or won't do. Knowing what situations may too difficult as a family. Being able to talk about his strengths and challenges to friends and strangers without tearing up (usually) and hearing the support and interest of those who are unfamiliar. Blocking out any ignorance or unkind statement.
1) Acceptance- of the things Robbie can or will do and those either he can't or won't do. Knowing what situations may too difficult as a family. Being able to talk about his strengths and challenges to friends and strangers without tearing up (usually) and hearing the support and interest of those who are unfamiliar. Blocking out any ignorance or unkind statement.
2) Trial - and error- continue to try new things but always have an exit strategy. 2 parents, 2 cars, a friend willing to watch one of the other children should an exit are needed. While we have tried just about every sport- Robbie is beginning to show genuine interest in basketball and soccer. We'll try again.
3) Preparation - pictures, discussion of events with Robbie and/ or arriving early to check out a scenario before he joins. Talking to others about events to know what pitfalls may lie ahead. ( ex. Robbie's fear of horses, so removing him from a party before the pony rides began, yes I said pony rides, it was an amazing party!)
4) Love- as always putting his needs at the top of the list , as they cannot always come first as 1 of 3 children. Yet we always think about how he may react to a situation and if it is worth the effort.
5) Experience -from us as parents and Robbie himself- knowing when he needs a deep squeeze, a light touch, an extra shower/ tub- for the pressure of the water, a quiet moment. Luckily many times he can tell us and more times than not he will “hang in there" a bit longer if we are at an event or party.
6) Laughter- Not always easy- but sometimes you just have to laugh. When Robbie decided to lay down in the middle of the hallway at Lexis' school during the art show- I scooped him up- but I did laugh my way to the car. This is our reality. Sometimes it is just- comical.
I am so proud of how far he has come and the kind, thoughtful and funny person he is.
I know there are many bumps ahead, puberty.......( Yikes...) Teenage years.....( Oh noooo) however I am equally fearful of those events with my neuro typical daughter, possibly more so. With hope, love, family and friends we will get through them, together. Hopefully with more laughter then tears !!!
Sunday, April 19, 2015
Food and Rainbows!
One of Robbie's home therapist asked my advice. He is a one to one aid in school to a boy who is not eating his lunch. His mother has requested that he sit with the boy until he has eaten his gluten free peanut butter sandwich. I asked if he eats anything else. Apparently he does eat some of the other items in his lunch, but lately not the sandwich. He wasn't sure that sitting with the boy and forcing him to eat would be beneficial long term. A different situation had occurred for a classmate of Robbie's. His mother shared her frustration as her son would eat everything else in his lunchbox before eating his sandwich. She thought that was fine, however the in class aide would try to make him eat the sandwich first. It became an issue. This mother however wasn't sure why it became an issue. If he's eating his entire lunch why does it matter what order he eats it in?
I have been blessed with three children who eat. I say this because I do know some families where eating anything can be a challenge. This post is not to demean those situations in any way.
The first situation may be that the boy was tired of the gluten free peanut sandwich that was packed every day. Robbie used to eat left over macaroni and cheese or couscous from dinner the night before for lunch. He will no longer eat either one in school. It took me a few while to make the connection, but I started packing different things for lunch and problem solved. The second situation is slightly different. If the order in which a child eats his lunch does not concern the parents, than why does it matter? I never pack sandwiches because he doesn't like them. This may have helped us avoid situations regarding what is eaten first. Although I too do not care as long as he eats lunch.
Both situations had me thinking about Robbie's eating habits as of late. I'll be honest. I've been celebrating a bit. Robbie has been expanding his food choices. This may seem small because as I mentioned he has always been a good eater. He does not have issue with texture as many on the spectrum do. We are lucky. However he is very picky. Whether that is in part due to the Autism or a kid just being picky- who knows. He will now eat Taco's- or at least the shell- with chicken and ketchup. May sound gross to some but I think it's great. This past week he ate regular pasta with butter and parmesan cheese. For the last 4 years he has not eaten pasta unless it was macaroni and cheese out of the box. Preferably Annie's homegrown mac and cheese. Friday night we made pizza ourselves. Usually I order from the local pizza shop because he would never eat the pizza we made. Loves to make it- but would never eat it. Maybe I was lucky because it was a new crust I hadn't tried- which was really good. Robbie ate his entire pizza. (Lot's of peperoni and little bit of cheese.- the way he likes it.)
Robbie has also decided he loves basketball. Many mornings he asks to play and shows me how ne can dribble the ball. We recently found a rainbow colored basketball at 5below and I think in Robbie's mind he'd won the lottery. (He is a bit obsessed with rainbows. You'll see many in our home- out of legos, blocks, beads, crayons- whatever is available.) He has been playing after school with his therapists. Since his father is a basketball coach this really should not be shocking, yet it was. He's watched it for years and never shown much interest. It's like a light bulb went on. I am happy he has found something he loves, besides minecraft and movies.
I was explaining how excited I have been with these "new culinary experiences" and his interest in basketball to my best friend. She gets my dueling sarcasm and genuine joy out situations like these. For us it is constant small steps, or little pieces of the giant puzzle that is Autism and Robbie. Some days they seem to be a dark cloud over our heads and some days they are as beautiful as the giant rainbow on his wall. And that is the beauty of Robbie! We love you Robbie!
I have been blessed with three children who eat. I say this because I do know some families where eating anything can be a challenge. This post is not to demean those situations in any way.
The first situation may be that the boy was tired of the gluten free peanut sandwich that was packed every day. Robbie used to eat left over macaroni and cheese or couscous from dinner the night before for lunch. He will no longer eat either one in school. It took me a few while to make the connection, but I started packing different things for lunch and problem solved. The second situation is slightly different. If the order in which a child eats his lunch does not concern the parents, than why does it matter? I never pack sandwiches because he doesn't like them. This may have helped us avoid situations regarding what is eaten first. Although I too do not care as long as he eats lunch.
Both situations had me thinking about Robbie's eating habits as of late. I'll be honest. I've been celebrating a bit. Robbie has been expanding his food choices. This may seem small because as I mentioned he has always been a good eater. He does not have issue with texture as many on the spectrum do. We are lucky. However he is very picky. Whether that is in part due to the Autism or a kid just being picky- who knows. He will now eat Taco's- or at least the shell- with chicken and ketchup. May sound gross to some but I think it's great. This past week he ate regular pasta with butter and parmesan cheese. For the last 4 years he has not eaten pasta unless it was macaroni and cheese out of the box. Preferably Annie's homegrown mac and cheese. Friday night we made pizza ourselves. Usually I order from the local pizza shop because he would never eat the pizza we made. Loves to make it- but would never eat it. Maybe I was lucky because it was a new crust I hadn't tried- which was really good. Robbie ate his entire pizza. (Lot's of peperoni and little bit of cheese.- the way he likes it.)
Robbie has also decided he loves basketball. Many mornings he asks to play and shows me how ne can dribble the ball. We recently found a rainbow colored basketball at 5below and I think in Robbie's mind he'd won the lottery. (He is a bit obsessed with rainbows. You'll see many in our home- out of legos, blocks, beads, crayons- whatever is available.) He has been playing after school with his therapists. Since his father is a basketball coach this really should not be shocking, yet it was. He's watched it for years and never shown much interest. It's like a light bulb went on. I am happy he has found something he loves, besides minecraft and movies.
I was explaining how excited I have been with these "new culinary experiences" and his interest in basketball to my best friend. She gets my dueling sarcasm and genuine joy out situations like these. For us it is constant small steps, or little pieces of the giant puzzle that is Autism and Robbie. Some days they seem to be a dark cloud over our heads and some days they are as beautiful as the giant rainbow on his wall. And that is the beauty of Robbie! We love you Robbie!
Tuesday, March 31, 2015
Miles of Hope- 5K to benefit Autism Speaks-.......Robbie is Ready!!!
http://www.courierpostonline.com/story/news/local/south-jersey/2015/03/26/south-jersey-moms-go-extra-mile-combat-autism/70495000/
Above is a link to an article that was in the Courier Post over the weekend discussing the upcoming 5K to benefit Autism Speaks. Robbie was so excited to see his picture in the paper!!
See the link below and please come out to support
Miles of Hope
5K Run/Walk
to benefit Autism Speaks
April 25th 8am
Vaughn Hall- Medford Lakes
https://runsignup.com/Race/NJ/MedfordLakes/MedfordLakesMilesofHope
Above is a link to an article that was in the Courier Post over the weekend discussing the upcoming 5K to benefit Autism Speaks. Robbie was so excited to see his picture in the paper!!
See the link below and please come out to support
Miles of Hope
5K Run/Walk
to benefit Autism Speaks
April 25th 8am
Vaughn Hall- Medford Lakes
https://runsignup.com/Race/NJ/MedfordLakes/MedfordLakesMilesofHope
Tuesday, March 17, 2015
Why my son, who has Autism, is a superhero..... for real
We all think our children are phenomenal. Of course they are. I am going to explain to you why my son is a superhero............. and many of classmates may be as well.
Spider-Man's five primary senses are above average perception, though not superhuman, as a result of his spider powers. This quote comes from Wikipedia, but it is exactly what I am referring to.
Vision- Robbie can literally pick out a needle in a haystack. He sees the smallest details in the biggest pictures. Coming from parents who both have horrible vision- it is unbelievable.
Taste- Robbie could taste .025 ml of a medication in applesauce, ice cream or juice. His sense of taste is uncanny.
Touch- Robbie will comment that I have hurt him if I graze past. Yet many times he craves deep pressure.
Sound- Vacuum cleaners may make him put his hands to his ears, yet loud laughing or happy screams- he enjoys.
Sickness- when I am not feeling well, Robbie is usually by my side asking if I am ok. Sometimes even before I realize that I do not feel ok.
All Superheroes have a weakness. For superman it's kryptonite. For Daredevil, who is blind, it is a lot of background noise. For the Flash it's actually running too fast. For the Human torch , it's not water, it's asbestos. Spiderman is not know to have any weaknesses, yet the common cold weakened his spider sense and gave the green goblin a distinct advantage.
What is Robbie's weakness or kryptonite? I think it may change of seasons. It is almost crazy as I track behavior and mood. We had thought it was change in routine and schedule that caused the behavioral issues. Now I think it may be weather. Robbie has sensory processing issues and a heightened sensitivity to the environment around him. . For him, this has been the biggest challenge. His occupational therapy needs are constant. One morning session would not help enough. Two 30 minute sessions weekly in school would not help enough. Adjustments have been made and more sensory breaks are woven in throughout his day. He has also become more aware of when he needs them and will take them accordingly in his classroom.
At dinner last night with a group I refer to as "Superwomen" of Autism moms, I hear stories of how one of Robbie's classmates has been learning multiple languages because he is fascinated with them. Yet his communication is still limited. It makes me wonder- how much knowledge has he been storing in his brain that is untapped? Another classmate uses a device to talk but is an incredibly fast runner. The only one who can catch him is the teacher- a true athlete- and runner. Other stories emerge of children hiding their faces under pillows or holding their ears and screaming in some sort of distress- all I can think is - what is their particular form of kryptonite. These children could be so highly in tune with the environment that what they hear, feel, or smell is something we just can't. So many what if's or maybe, that's why.... The discussion was unanimous that none of us think we will ever know what has caused our children to have autism. It is a puzzle. But as I ponder the why- there may be a day when someone literally saves your life....... and then flaps their hands, jumps up and down, says "EEEEEEEEEEEEEEEEE" or some scripting phrase in another language and runs away, at an incredible speed to the safety of their own bedroom. SOMEDAY :)
Spider-Man's five primary senses are above average perception, though not superhuman, as a result of his spider powers. This quote comes from Wikipedia, but it is exactly what I am referring to.
Vision- Robbie can literally pick out a needle in a haystack. He sees the smallest details in the biggest pictures. Coming from parents who both have horrible vision- it is unbelievable.
Taste- Robbie could taste .025 ml of a medication in applesauce, ice cream or juice. His sense of taste is uncanny.
Touch- Robbie will comment that I have hurt him if I graze past. Yet many times he craves deep pressure.
Sound- Vacuum cleaners may make him put his hands to his ears, yet loud laughing or happy screams- he enjoys.
Sickness- when I am not feeling well, Robbie is usually by my side asking if I am ok. Sometimes even before I realize that I do not feel ok.
All Superheroes have a weakness. For superman it's kryptonite. For Daredevil, who is blind, it is a lot of background noise. For the Flash it's actually running too fast. For the Human torch , it's not water, it's asbestos. Spiderman is not know to have any weaknesses, yet the common cold weakened his spider sense and gave the green goblin a distinct advantage.
What is Robbie's weakness or kryptonite? I think it may change of seasons. It is almost crazy as I track behavior and mood. We had thought it was change in routine and schedule that caused the behavioral issues. Now I think it may be weather. Robbie has sensory processing issues and a heightened sensitivity to the environment around him. . For him, this has been the biggest challenge. His occupational therapy needs are constant. One morning session would not help enough. Two 30 minute sessions weekly in school would not help enough. Adjustments have been made and more sensory breaks are woven in throughout his day. He has also become more aware of when he needs them and will take them accordingly in his classroom.
At dinner last night with a group I refer to as "Superwomen" of Autism moms, I hear stories of how one of Robbie's classmates has been learning multiple languages because he is fascinated with them. Yet his communication is still limited. It makes me wonder- how much knowledge has he been storing in his brain that is untapped? Another classmate uses a device to talk but is an incredibly fast runner. The only one who can catch him is the teacher- a true athlete- and runner. Other stories emerge of children hiding their faces under pillows or holding their ears and screaming in some sort of distress- all I can think is - what is their particular form of kryptonite. These children could be so highly in tune with the environment that what they hear, feel, or smell is something we just can't. So many what if's or maybe, that's why.... The discussion was unanimous that none of us think we will ever know what has caused our children to have autism. It is a puzzle. But as I ponder the why- there may be a day when someone literally saves your life....... and then flaps their hands, jumps up and down, says "EEEEEEEEEEEEEEEEE" or some scripting phrase in another language and runs away, at an incredible speed to the safety of their own bedroom. SOMEDAY :)
Monday, March 2, 2015
Unprompted Spontaneous Language
And the roller coaster of Autism goes up! As I have mentioned in prior blogs we have learned that after a stressful period comes progress. This weekend has been no different. While the balloon incident definitely threw us, the next day increased communication from Robbie and better listening from Mom and Dad occurred.
Sunday morning Robbie asked for a tub. He loves the water and spends as much time as he can in it. There is a sensory component with the pressure of the water surrounding his entire body. If you've see him at the lake in the summer , he is often chin deep - happy as a clam. ( Robbie would say- " No, I am not a clam, I am a boy..... LOL)
Lexi reminds us that Robbie had a tub the night before so he doesn't need one first thing in the morning. She also lets me know when his fingers have become wrinkly after he had has in the water for 20 minutes. The night before that was her sign to get out of the bath. I explain to Lexi that Robbie loves the water and it helps him in ways that are different than just getting clean. I also explain its a Sunday and there isn't a line for the bath- as there can be on a week night when 3 individual baths need to be drawn with some supervision for all 3. Robbie happily sits in the tub writing his name in shaving cream.
Sunday night, Robbie tells Rob he needs a hair cut. Whoa...... He has never asked for a hair cut. In fact , hair cuts usually start with some screaming, crying, and yelling "No don't cut my hair." Last night Robbie says he'd like his hair cut, but just around his ears- where it has gotten very long. He explains it has been bothering him. Awesome. He is communicating, and getting a hair cut- which he really needed!
Monday morning- Rob asks Robbie if he wants to take a shower. Robbie happily says yes. While getting the shower turned on he looks at his dad and says " You've got your red?." pointing to his Dad's shorts. "Yes Robbie, I have red shorts." Robbie replies "What's your favorite color?" Dad replies "It's green." Robbie says- "You like green? My favorite color is blue."
Unprompted spontaneous language. It's a beautiful thing. My wish coming true!
Sunday morning Robbie asked for a tub. He loves the water and spends as much time as he can in it. There is a sensory component with the pressure of the water surrounding his entire body. If you've see him at the lake in the summer , he is often chin deep - happy as a clam. ( Robbie would say- " No, I am not a clam, I am a boy..... LOL)
Lexi reminds us that Robbie had a tub the night before so he doesn't need one first thing in the morning. She also lets me know when his fingers have become wrinkly after he had has in the water for 20 minutes. The night before that was her sign to get out of the bath. I explain to Lexi that Robbie loves the water and it helps him in ways that are different than just getting clean. I also explain its a Sunday and there isn't a line for the bath- as there can be on a week night when 3 individual baths need to be drawn with some supervision for all 3. Robbie happily sits in the tub writing his name in shaving cream.
Sunday night, Robbie tells Rob he needs a hair cut. Whoa...... He has never asked for a hair cut. In fact , hair cuts usually start with some screaming, crying, and yelling "No don't cut my hair." Last night Robbie says he'd like his hair cut, but just around his ears- where it has gotten very long. He explains it has been bothering him. Awesome. He is communicating, and getting a hair cut- which he really needed!
Monday morning- Rob asks Robbie if he wants to take a shower. Robbie happily says yes. While getting the shower turned on he looks at his dad and says " You've got your red?." pointing to his Dad's shorts. "Yes Robbie, I have red shorts." Robbie replies "What's your favorite color?" Dad replies "It's green." Robbie says- "You like green? My favorite color is blue."
Unprompted spontaneous language. It's a beautiful thing. My wish coming true!
Sunday, March 1, 2015
Robbie, I'm scared...........
Robbie, I'm scared. Robbie, you scared us. I've written about hearing the phrase "Mommy, I'm scared" in the wee hours of the morning (1am, 2am, 3am) Friday night was one of those nights. Robbie is often plagued with anxiety.
Saturday night it is us who are plagued with anxiety and fear for our son. Besides anxiety, Robbie has many sensory issues. At times he is very sensitive to touch. He'll say " ouch- you hurt me" if you brush past him,gently grazing his arm. I'll think- I barely touched you. At times he wants to be touched lightly. He'll ask for tickles on his back or a little hug. At other times he needs added pressure. A weighted blanket or a deep bear hug. Communication has improved ten fold yet there are still times when we don't know what he needs. He can be sensory seeking to regulate himself. As he approached me last night with the balloon ribbon wrapped tightly around his neck panic set in. At that point he wanted it removed and he could still breathe yet it was hard enough to remove safely that I yelled for Rob, as calmly as I could, and ran to get scissors. Rob removed the ribbon and we both looked at each other, tears in our eyes remembering an incident a few years prior. Robbie had climbed onto a built in desk in the playroom. He had wrapped the cord to the blinds around his neck and gotten stuck. Again he was not at the point where he couldn't breathe but it was extremely scary. Here years later, just as I have been commenting on how much more control we have with Robbie's sensory issues, it has happened again.
To be perfectly clear, Robbie did not want to hurt himself. He may have had the sensation of " spiders crawling on him" as he tells me sometimes. He may have needed a really tight squeeze from head to toe. We don't really know.
To be perfectly clear, we were all right there. Rob and I had just finished watching a movie in our family room and all 3 kids had been playing in the kitchen. Our house has that fairly open concept and there are many views from the family room to the kitchen. I could hear them. Most of the time I could see them. My attention gravitating between the movie and Timmy , the 19th month old toddler. Yet never did I expect the need to keep that close of an eye on my almost 9 year old.
After the fear subsided a bit, I think there may have been a bit of yelling. Rob explaining to Robbie that he can't do that. It is dangerous. It's a bit of a blur. After receiving the scissors back from Rob, I froze. I remember clenching them tightly in my hand so the sharp ends were safely hidden from the other children.
Robbie ran to his room. He was upset. This was not the first time he'd run to his room today. That is how he handles being disciplined or hearing something he disagreed with. He is, after all, almost nine years old. Rob went up after him a few minutes later. I put the scissors back into the cabinet where we keep them hidden so Robbie doesn't cut his own hair, as he's done one too many times. I also went upstairs to check on Robbie. Rob was exiting his room as I entered and I noticed it felt cold but dismissed it until Rob explained Robbie had opened his window all the way up. The screen is not childproof, the warning written right on it. His bed sits up against the window. Again a situation that could have been disastrous, but thankfully was caught in time. As I curled up with Robbie I said " I'm not sure what to do" to Rob, referring to the window incident. Rob mentioned screwing the windows shut. Maybe we'll rearrange his furniture again, was my thought, but we'll figure it out tomorrow. I held Robbie extra tight. I looked at him, wiping the tears from his eyes and said "Robbie you scared me. You scared us. We love you. You can't wrap anything around your neck. It's dangerous." We laid their for a few minutes and discussed watching his favorite movie , Big Hero 6 on the "big tv, downstairs." I didn't want him out of sight as I prepared dinner for the family. While downstairs he pointed to his Big Hero 6 balloon that had floated to the ceiling asking if he could have it. I told him we would take the string off it but he could hold it. He put his hands to his neck and said " sorry mommy, I love you."
I love you too Robbie. I was scared. I'm not always sure what to do. Please try to tell me what you need so I can help you.
As I wipe the tears from my own eyes, that is my wish and my hope. Robbie will be able to communicate his needs. He will be able to self regulate, safely and appropriately. He will have the ability to control his stimming behaviors in public. He will be happy. He will be safe. He will always feel loved.
Saturday night it is us who are plagued with anxiety and fear for our son. Besides anxiety, Robbie has many sensory issues. At times he is very sensitive to touch. He'll say " ouch- you hurt me" if you brush past him,gently grazing his arm. I'll think- I barely touched you. At times he wants to be touched lightly. He'll ask for tickles on his back or a little hug. At other times he needs added pressure. A weighted blanket or a deep bear hug. Communication has improved ten fold yet there are still times when we don't know what he needs. He can be sensory seeking to regulate himself. As he approached me last night with the balloon ribbon wrapped tightly around his neck panic set in. At that point he wanted it removed and he could still breathe yet it was hard enough to remove safely that I yelled for Rob, as calmly as I could, and ran to get scissors. Rob removed the ribbon and we both looked at each other, tears in our eyes remembering an incident a few years prior. Robbie had climbed onto a built in desk in the playroom. He had wrapped the cord to the blinds around his neck and gotten stuck. Again he was not at the point where he couldn't breathe but it was extremely scary. Here years later, just as I have been commenting on how much more control we have with Robbie's sensory issues, it has happened again.
To be perfectly clear, Robbie did not want to hurt himself. He may have had the sensation of " spiders crawling on him" as he tells me sometimes. He may have needed a really tight squeeze from head to toe. We don't really know.
To be perfectly clear, we were all right there. Rob and I had just finished watching a movie in our family room and all 3 kids had been playing in the kitchen. Our house has that fairly open concept and there are many views from the family room to the kitchen. I could hear them. Most of the time I could see them. My attention gravitating between the movie and Timmy , the 19th month old toddler. Yet never did I expect the need to keep that close of an eye on my almost 9 year old.
After the fear subsided a bit, I think there may have been a bit of yelling. Rob explaining to Robbie that he can't do that. It is dangerous. It's a bit of a blur. After receiving the scissors back from Rob, I froze. I remember clenching them tightly in my hand so the sharp ends were safely hidden from the other children.
Robbie ran to his room. He was upset. This was not the first time he'd run to his room today. That is how he handles being disciplined or hearing something he disagreed with. He is, after all, almost nine years old. Rob went up after him a few minutes later. I put the scissors back into the cabinet where we keep them hidden so Robbie doesn't cut his own hair, as he's done one too many times. I also went upstairs to check on Robbie. Rob was exiting his room as I entered and I noticed it felt cold but dismissed it until Rob explained Robbie had opened his window all the way up. The screen is not childproof, the warning written right on it. His bed sits up against the window. Again a situation that could have been disastrous, but thankfully was caught in time. As I curled up with Robbie I said " I'm not sure what to do" to Rob, referring to the window incident. Rob mentioned screwing the windows shut. Maybe we'll rearrange his furniture again, was my thought, but we'll figure it out tomorrow. I held Robbie extra tight. I looked at him, wiping the tears from his eyes and said "Robbie you scared me. You scared us. We love you. You can't wrap anything around your neck. It's dangerous." We laid their for a few minutes and discussed watching his favorite movie , Big Hero 6 on the "big tv, downstairs." I didn't want him out of sight as I prepared dinner for the family. While downstairs he pointed to his Big Hero 6 balloon that had floated to the ceiling asking if he could have it. I told him we would take the string off it but he could hold it. He put his hands to his neck and said " sorry mommy, I love you."
I love you too Robbie. I was scared. I'm not always sure what to do. Please try to tell me what you need so I can help you.
As I wipe the tears from my own eyes, that is my wish and my hope. Robbie will be able to communicate his needs. He will be able to self regulate, safely and appropriately. He will have the ability to control his stimming behaviors in public. He will be happy. He will be safe. He will always feel loved.
Wednesday, February 25, 2015
Autism Reversed...........................nope
I had coffee this morning with a coworker and friend from many lifetimes ago. The pre marriage and pre children era. While we were catching up on each lives- kids, marriage, divorce, many career moves- she mentioned a friend who had a child at the same time she did. This friend's son had a diagnosis of autism spectrum disorder. However this friend through early intervention had reversed the diagnosis.
I felt my body tense. My teeth clenched. I bit my tongue for a minute. I had just mentioned that Robbie was doing well a few minutes prior. I took a breathe. She didn't realize the effect that statement had on me. I explained my position.
There is no evidence that Autism can be reversed. There is no evidence that Autism can be cured. I believe that some children can learn how to handle situations and their own internal struggles to manage symptoms. I believe that many of those put into the umbrella of Autism Spectrum disorder may not have Autism. I believe many may have other issues such as food allergies or sensory issues. However many on the Autism Spectrum have food allergies/ sensitivities and sensory issues so it can be a difficult thing to define. I don't think we'll ever truly know what causes Autism. It is a puzzle with many pieces as the logo shows.
And yes, Robbie is doing really well- for Robbie. As his teacher said during our conference today when I asked- as I do at every conference- "How does Robbie stack up academically compared to his neuro-typical peers?" Her response " He is exactly where Robbie should be. He has made a lot of progress over the last 3 years." Academically he is somewhere around a first grade level. Still, he has Autism spectrum disorder. He struggles with stimming behaviors and focus. Yet he is advancing and improving. He is learning some self regulation behaviors. He is becoming more social. He is participating in games club- playing Uno with 2 fourth grade girls. ( He loves the girls.) He has a buddy named Danny that he plays Minecraft with at the end of every day. He loves school and his routine. He is happy. He is loving. He is Robbie. He is my son and I am proud of him!
I felt my body tense. My teeth clenched. I bit my tongue for a minute. I had just mentioned that Robbie was doing well a few minutes prior. I took a breathe. She didn't realize the effect that statement had on me. I explained my position.
There is no evidence that Autism can be reversed. There is no evidence that Autism can be cured. I believe that some children can learn how to handle situations and their own internal struggles to manage symptoms. I believe that many of those put into the umbrella of Autism Spectrum disorder may not have Autism. I believe many may have other issues such as food allergies or sensory issues. However many on the Autism Spectrum have food allergies/ sensitivities and sensory issues so it can be a difficult thing to define. I don't think we'll ever truly know what causes Autism. It is a puzzle with many pieces as the logo shows.
And yes, Robbie is doing really well- for Robbie. As his teacher said during our conference today when I asked- as I do at every conference- "How does Robbie stack up academically compared to his neuro-typical peers?" Her response " He is exactly where Robbie should be. He has made a lot of progress over the last 3 years." Academically he is somewhere around a first grade level. Still, he has Autism spectrum disorder. He struggles with stimming behaviors and focus. Yet he is advancing and improving. He is learning some self regulation behaviors. He is becoming more social. He is participating in games club- playing Uno with 2 fourth grade girls. ( He loves the girls.) He has a buddy named Danny that he plays Minecraft with at the end of every day. He loves school and his routine. He is happy. He is loving. He is Robbie. He is my son and I am proud of him!
Friday, February 20, 2015
I've got you...............
Anxiety is a huge hurtle for many of those on the spectrum. Robbie is definitely no exception. We have tried many anti anxiety medications- none of which seem to help. Late last night after being woken again to "Mommy I'm scared" and responding with a big hug and the reassurance that I am there and I've got him, I began to write this blog in my head- as I do many late nights. The new medication we have been giving Robbie- he won't take. We have tried liquid- mixing with apple sauce and even ice cream. He seems to notice it- and then pushes it away. We've tried tablet form- crushing it into juice with his other medication. He will not drink it. He points to the medications bottle and says- "No that one."- even when he doesn't see me put it in his apple juice. Amazing sense of taste.
As I contemplate the phone conversation I will have with his pediatric neurological nurse practioner, I open my emails. There it is, the Autism blog that I read religiously. The topic is anxiety. It explains through the voice of someone on the spectrum how much anxiety they feel every single day, from the moment they wake in the morning, even in their own homes. It also talks about the tools they have developed to handle the anxiety- each one unique. Perspective.
"Hugga Me." "Take a deep breathe" These phrases I hear at least 30 times a day- or more. It can become cumbersome. When you are cooking dinner, changing a diaper or helping a 6 year with her homework (which by the way can be really confusing these days). Stopping to give a hug, make eye contact and take a deep breathe seems like a lot. Especially if it's the 25th time in the last 15 minutes. Robbie's therapist thinks it has become an OCD behavior just as much as a coping mechanism. But it is a strategy he has developed- with our help. At times he will also tell me he needs a squeeze. On the flip side sometimes he will tell me he does not want to be touched or does not want to talk. Progress!
Nighttime has always been a challenge in our home. Robbie will not sleep by himself. The routine goes- someone lays with him until he falls asleep. Then we leave to go to our own bed. A few hour later he will come find one of us- usually me. Many nights he'll say "Mommy I'm scared." My reply is and will always be the same " I'm right here Robbie. I've got you."
As I contemplate the phone conversation I will have with his pediatric neurological nurse practioner, I open my emails. There it is, the Autism blog that I read religiously. The topic is anxiety. It explains through the voice of someone on the spectrum how much anxiety they feel every single day, from the moment they wake in the morning, even in their own homes. It also talks about the tools they have developed to handle the anxiety- each one unique. Perspective.
"Hugga Me." "Take a deep breathe" These phrases I hear at least 30 times a day- or more. It can become cumbersome. When you are cooking dinner, changing a diaper or helping a 6 year with her homework (which by the way can be really confusing these days). Stopping to give a hug, make eye contact and take a deep breathe seems like a lot. Especially if it's the 25th time in the last 15 minutes. Robbie's therapist thinks it has become an OCD behavior just as much as a coping mechanism. But it is a strategy he has developed- with our help. At times he will also tell me he needs a squeeze. On the flip side sometimes he will tell me he does not want to be touched or does not want to talk. Progress!
Nighttime has always been a challenge in our home. Robbie will not sleep by himself. The routine goes- someone lays with him until he falls asleep. Then we leave to go to our own bed. A few hour later he will come find one of us- usually me. Many nights he'll say "Mommy I'm scared." My reply is and will always be the same " I'm right here Robbie. I've got you."
Tuesday, February 3, 2015
Expectations
This post is two fold- Do I need to adjust certain expectations for Robbie? Do Others need to adjust certain expectations for Robbie?
Others first- Yesterday I went to pick Robbie up from after school games club. This is a social skills club where regular education children and special needs children play board games. The goal is to teach good sportsmanship, turn taking, social interaction and acceptance of those with differences. Those are the goals in my mind. The club has only met a few times due to snow and holidays. The person leading the group is Robbie's school social worker. She hasn't had a ton of direct contact with Robbie but has managed his case for the 3 years he has been at his current school. The first week she told me how great he did- although she had to encourage him to pop the dice for the game of trouble. ( encourage meaning hold her hand over his.) He did try to introduce his sister to a little girl in the club when we picked him up. To me- that was great. Yesterday she was excited because "Robbie did such a great job! He popped the dice all on his own." Hmmm. Really? I can see the progression but we also have the same game at home and on occasion he will play with Lexi and I. When we got home I read his daily report from school. Robbie had been very moody, difficult and was giving his teacher the silent treatment. She asked if we had experienced the same thing. Another subject entirely- but yes we have experienced the same thing on and off for a few weeks. He has seemed very overwhelmed at times and will change his mind during the same sentence. " Can I have applesauce, no I don't want applesauce, yes I'll eat applesauce, no I'm not hungry, please give me applesauce." Yes- that is for real. It happens many times during the day. Sometimes he just stops talking. He does this on purpose and will ensure he has full attention and eye contact while pointing out what he wants. Kind of brilliant if you ask me. He's struggling- so this makes it easier. - I digress. Expectations. Are the expectations Robbie's social worker has for games club that he will pop the dice in a game and that is success? I hope not. That is not my expectation. Next up- email to social worker discussing expectations and goals.
My expectations- I've mentioned in many blogs that Robbie doesn't understand catch phrases or slang terms. This morning I asked Robbie to get dressed and made a comment "whatever works man." His response was "I am not a man, I am a boy." My reply " Robbie you are right, you are a boy. It's just an expression. " Robbie " I am not an expression!!!!! I am a boy. I am Robbie!!" I put my hand on his head to calm him down and said " you are sensitive today." He replied- " I am not hot- I am better." He thought I was checking his temperature. I thought about the interaction that had just taken place. I asked Lexi if she understood what a catch phrase was. For example " see you later alligator." She said "you mean from a movie?" I explained that I am not really calling her an alligator- which I think she understood but the concept of a catch phrase may be a bit over her head. So- when do children pick up catch phrases , satire, sarcasm and really understand what they mean? I think I have to adjust my expectations. Maybe one day Robbie will truly understand, and then again, maybe not. Either way , it's ok. :)
Others first- Yesterday I went to pick Robbie up from after school games club. This is a social skills club where regular education children and special needs children play board games. The goal is to teach good sportsmanship, turn taking, social interaction and acceptance of those with differences. Those are the goals in my mind. The club has only met a few times due to snow and holidays. The person leading the group is Robbie's school social worker. She hasn't had a ton of direct contact with Robbie but has managed his case for the 3 years he has been at his current school. The first week she told me how great he did- although she had to encourage him to pop the dice for the game of trouble. ( encourage meaning hold her hand over his.) He did try to introduce his sister to a little girl in the club when we picked him up. To me- that was great. Yesterday she was excited because "Robbie did such a great job! He popped the dice all on his own." Hmmm. Really? I can see the progression but we also have the same game at home and on occasion he will play with Lexi and I. When we got home I read his daily report from school. Robbie had been very moody, difficult and was giving his teacher the silent treatment. She asked if we had experienced the same thing. Another subject entirely- but yes we have experienced the same thing on and off for a few weeks. He has seemed very overwhelmed at times and will change his mind during the same sentence. " Can I have applesauce, no I don't want applesauce, yes I'll eat applesauce, no I'm not hungry, please give me applesauce." Yes- that is for real. It happens many times during the day. Sometimes he just stops talking. He does this on purpose and will ensure he has full attention and eye contact while pointing out what he wants. Kind of brilliant if you ask me. He's struggling- so this makes it easier. - I digress. Expectations. Are the expectations Robbie's social worker has for games club that he will pop the dice in a game and that is success? I hope not. That is not my expectation. Next up- email to social worker discussing expectations and goals.
My expectations- I've mentioned in many blogs that Robbie doesn't understand catch phrases or slang terms. This morning I asked Robbie to get dressed and made a comment "whatever works man." His response was "I am not a man, I am a boy." My reply " Robbie you are right, you are a boy. It's just an expression. " Robbie " I am not an expression!!!!! I am a boy. I am Robbie!!" I put my hand on his head to calm him down and said " you are sensitive today." He replied- " I am not hot- I am better." He thought I was checking his temperature. I thought about the interaction that had just taken place. I asked Lexi if she understood what a catch phrase was. For example " see you later alligator." She said "you mean from a movie?" I explained that I am not really calling her an alligator- which I think she understood but the concept of a catch phrase may be a bit over her head. So- when do children pick up catch phrases , satire, sarcasm and really understand what they mean? I think I have to adjust my expectations. Maybe one day Robbie will truly understand, and then again, maybe not. Either way , it's ok. :)
Monday, February 2, 2015
Parenthood- the TV show- after 6 seasons I will miss you!
Parenthood- for 6 years I have watched every episode. Cried almost every week and yet smiled through it all. This show has meant so much to me over the last 6 years. Robbie is turning 9 in March. He was diagnosed at 3. I watched as Max Braverman- a character on the show- was diagnosed with Asperger's syndrome. I cried with the family- relating to the horrible sense of loss that accompanies a new diagnosis- of any kind. I watched the final episode where he graduated from High school- a charter school his mother had founded especially for kids like him. As the years went on I sometimes felt a bit detached to Max's character as Asperger's- while considered part of the spectrum of autism- is different than Robbie's diagnosis of moderate Autism. And even more- different than Robbie. Max does not like to be touched and almost never makes eye contact. While Robbie's eye contact comes and goes with people he does not know well, he makes fairly consistent eye contact at home. Robbie also likes to be touched- hugged and kissed. (Particularly big squeezes ) The interaction with Max and his siblings- or lack of interaction is also different. People often ask me how Robbie is with his siblings. I answer, but always find that to be an odd question- until I remember they don't know Robbie. He loves his siblings. He is excited to see Lexi after school and plays really well with her. She is his one true friend. He is also good with Timmy- most of the time, just as any other child would be with a toddler sibling. ( Timmy takes his toys, legos, food, juice, etc, etc, etc. I would be frustrated by that. ) There are similarities as well. The social awkwardness, being content to stay home, lack of interest in organized team sports, being very focused on one thing at a time. The inability to understand common phrases or slang. " See you later alligator " is followed by "I am not an alligator!!" usually yelled back in frustration by Robbie. These are also just similarities between Robbie and Max. I know other children on the spectrum who crave social interaction and enjoy team sports. Every child is different yet there are many strands of similarities. Again- its a spectrum.
As Autism rates sky rocket it is a bit amazing to me that there are not other shows which discuss the issues involved in life on the spectrum- or maybe I've missed them? At any rate- Parenthood and The Braverman family- I will miss you. Thank you for ending the season where you see some true joy on Max's face, as I sometimes see on Robbie's. Max hugs his baby sister, he plays baseball with his family, he takes pictures at a family wedding- a skill he is really good at.. Thank you for holding my hand through the last 6 years. Now who will be for the next 6? Any suggestions?
As Autism rates sky rocket it is a bit amazing to me that there are not other shows which discuss the issues involved in life on the spectrum- or maybe I've missed them? At any rate- Parenthood and The Braverman family- I will miss you. Thank you for ending the season where you see some true joy on Max's face, as I sometimes see on Robbie's. Max hugs his baby sister, he plays baseball with his family, he takes pictures at a family wedding- a skill he is really good at.. Thank you for holding my hand through the last 6 years. Now who will be for the next 6? Any suggestions?
Thursday, January 15, 2015
Shut up! Oh no I didn't........
Yes I did. I said those two words to my autistic eight year old son. The same son whom I tell daily how much I love to hear him talk. In my defense it was 5am. I had been listening to him script movies, mutter to himself, tell me he's sad, tell me he's happy, ask for a kiss , since 1am when he woke up. This is the cycle we go through. He sleeps well for a few weeks and then- very very little sleep for a few weeks. What pushed me over the edge last night was not just shear exhaustion but that he had gone into his sister's room at 4:30am, specifically to wake her up. He knows better. He knows it is still night time and everyone else wants/ needs to sleep. He knows I will stay with him while he struggles through whatever is going on in his mind. Yet he woke up the first grader on a school night. At 5am she began complaining of stomach pains. We have had the stomach bug once already and I was dreading the thought of her hunched over the toilet as she had been last time. Sick kids are the worst- since there is so little you can do to ease their discomfort. At 5am Robbie began running down the hallway yelling some movie line. He had already woken Dad, who leaves for work by 6:30am so sleep is precious as well. Now I thought- he'll wake Timmy too and it will all be over. 3 exhausted kids are much worse than 1 or even 2. So it came out of my mouth- "Robbie- please just shut up." Horrible and ineffective. He laid in bed with Dad while I got Lexi in the tub- still feeling sick.
Truth be told I had a feeling it would be a rough night when I picked him up from School. He has his first session of "Games Club"- which is a social skills class at school. At first he was so happy to see us. He tried to introduce Lexi to another regular ed little girl in the club. I was told he did well. Yet he was stimmier (if that is even a word) than usual. He was muttering to himself and extremely jittery on the ride home. I don't think he was unhappy- actually he seemed very happy yet overstimulated at the same time. It was a Monday. Mondays are tough to begin with and the games club added an extra hour to his day.
Again- this a cycle. And with it comes great reward. Tuesday night Robbie asked me to play a game with him. He has NEVER asked to play a game. We usually beg him. Last night he played the same game with his ABA therapist and sister. His speech and communication has also increased. Yesterday he told me about his day at school. He played mindcraft and made chickens with one of the aides at school. (I'm sure it was during free time.) Again- he has never told me about his day with being prompted, multiple times. He is taking a second session of a regular art class. We drive by the art studio everyday while taking Lexi to school and he has said- "I love that place." His aba instructor picked him up and took him to the class this week. A friend of mine whose daughter is in the class drove him home. Seems like small potatoes to most but all this things are huge to us!
As I drink my 2nd cup of what will likely be 10 cups of coffee today- as last night was another rough night I am reminded of just how far we've come. Last night I was able to manage my own behavior and from 1am until 4:30am told him I loved him. Gave a few hugs and asked him politely to quiet down so everyone else could sleep, while he played on his ipad or watched a movie. Never again do I want to lose my patience and ask him to stop talking, just to keep it down from midnight to 5am.............. Love you Robbie.
Truth be told I had a feeling it would be a rough night when I picked him up from School. He has his first session of "Games Club"- which is a social skills class at school. At first he was so happy to see us. He tried to introduce Lexi to another regular ed little girl in the club. I was told he did well. Yet he was stimmier (if that is even a word) than usual. He was muttering to himself and extremely jittery on the ride home. I don't think he was unhappy- actually he seemed very happy yet overstimulated at the same time. It was a Monday. Mondays are tough to begin with and the games club added an extra hour to his day.
Again- this a cycle. And with it comes great reward. Tuesday night Robbie asked me to play a game with him. He has NEVER asked to play a game. We usually beg him. Last night he played the same game with his ABA therapist and sister. His speech and communication has also increased. Yesterday he told me about his day at school. He played mindcraft and made chickens with one of the aides at school. (I'm sure it was during free time.) Again- he has never told me about his day with being prompted, multiple times. He is taking a second session of a regular art class. We drive by the art studio everyday while taking Lexi to school and he has said- "I love that place." His aba instructor picked him up and took him to the class this week. A friend of mine whose daughter is in the class drove him home. Seems like small potatoes to most but all this things are huge to us!
As I drink my 2nd cup of what will likely be 10 cups of coffee today- as last night was another rough night I am reminded of just how far we've come. Last night I was able to manage my own behavior and from 1am until 4:30am told him I loved him. Gave a few hugs and asked him politely to quiet down so everyone else could sleep, while he played on his ipad or watched a movie. Never again do I want to lose my patience and ask him to stop talking, just to keep it down from midnight to 5am.............. Love you Robbie.
Friday, January 9, 2015
Amazing Robbie and.... Astonishing Alexis
As I write all these blog posts about Amazing Robbie it makes me think about the movie Gone Girl. ( I don't want to give away the story to those who haven't seen the movie or read the book and to my husband- don't get nervous about where this post is going.) The parents of "Amazing Amy" the main character in the movie write a series of childrens books based on her. She was their only child and they obviously - really screwed her up. I don't worry - as much- about screwing Robbie up as I do my other neurotypical children. Robbie is amazing. He has already over come tremendous odds. Today he pulled out a series of pictures he had cut out in school. He laid them out on the table. He told me a story about the pictures. The story was clear, concise and he demanded my full attention. I laughed reciting the event with Rob tonight. As a (part time) working mother of three, no one ever really gets my full attention. Robbie made sure to get full eye contact. I paused and he told me the story. The story itself has meaning as well. It was about a mother bird who had three baby birds. They hatched. She fed them "wormins" ( that's what worms are called on the backyardigans- so that has stuck.) Individually they flew out of the nest- each doing it differently. The last image is of the mother drinking lemonade- and "relaxing" as Robbie told me. Of course by the end of this 2 minute tale this momma was almost in tears. Never could I have imagined sitting with my oldest son and having this type of interaction. He also told me how much he loves school- especially getting these stories to bring home- and that his teacher has a giant boyfriend.- ( Miss Kim- if you read this- it was hysterical.) Amazing Robbie.
This brings to my other children - especially my little girl who often gets over looked. She is stuck between a special needs older brother and a toddler- who obviously needs more supervision than she does at this point. She is amazing as well. I think my expectations for her are higher however. I think I may get frustrated more easily with her. I fear that one day she will read all these posts that talk so much about my love for Robbie and feel- less than amazing. One of my (many) resolutions for the new year is to ensure I tell her how special she is. How smart she is. How funny she is. How amazing she is- not only for being such a great sister to her brothers but because of who she is. How much joy she gives me every day and how much I love her. Astonishing Alexis........ I hope I don't screw you up!!xxoo
This brings to my other children - especially my little girl who often gets over looked. She is stuck between a special needs older brother and a toddler- who obviously needs more supervision than she does at this point. She is amazing as well. I think my expectations for her are higher however. I think I may get frustrated more easily with her. I fear that one day she will read all these posts that talk so much about my love for Robbie and feel- less than amazing. One of my (many) resolutions for the new year is to ensure I tell her how special she is. How smart she is. How funny she is. How amazing she is- not only for being such a great sister to her brothers but because of who she is. How much joy she gives me every day and how much I love her. Astonishing Alexis........ I hope I don't screw you up!!xxoo
Thursday, January 8, 2015
A simple fact
Here is a simple fact- and one that resonates with most parents. I will like you if you are nice to my kids. If you show them kindness and treat them with respect. Sounds pretty simple. Most of the time it is pretty simple. Who would be unkind to a child?
I understand that autism can be a scary word. It is different. Some may not know how to react to a child that is different- especially one who may not respond to them at all. Some days Robbie is completely engaged and will acknowledge others and have clear concise communication- like right now as he is explaining what's going on in the movie Astro Boy- and I am obviously not paying attention. He is giving me the play by the play- to ensure I don't miss out on his joy. ( He loves this movie.) Other days Robbie is - for lack of a better term "stuck in his own head." He will not make eye contact and if you try to engage him , he will seem to ignore you. That can be frustrating. And I understand why some would give up.
I ask- please - continue to try and engage him. Try and talk to him. Try and treat him like you would treat every other 8 year old boy. I promise that the times he lets you in- are well worth the effort. And not just because he's my little boy. His perspective is unique. His innocence is refreshing. He has a wonderful sense of humor. He wants to play. He wants to be heard. Many times it just takes a little more effort, on everyone's part..
I understand that autism can be a scary word. It is different. Some may not know how to react to a child that is different- especially one who may not respond to them at all. Some days Robbie is completely engaged and will acknowledge others and have clear concise communication- like right now as he is explaining what's going on in the movie Astro Boy- and I am obviously not paying attention. He is giving me the play by the play- to ensure I don't miss out on his joy. ( He loves this movie.) Other days Robbie is - for lack of a better term "stuck in his own head." He will not make eye contact and if you try to engage him , he will seem to ignore you. That can be frustrating. And I understand why some would give up.
I ask- please - continue to try and engage him. Try and talk to him. Try and treat him like you would treat every other 8 year old boy. I promise that the times he lets you in- are well worth the effort. And not just because he's my little boy. His perspective is unique. His innocence is refreshing. He has a wonderful sense of humor. He wants to play. He wants to be heard. Many times it just takes a little more effort, on everyone's part..
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