Summers are always hard with Bambam. Both Mr. Fixit and I work. Granted I only work part-time, but still need some sort of day care for about 25 hours a week. In the past we have muddled through with a hodge podge of grandparents, brother's help, and a very flexible work schedule for both myself and Mr. Fixit.
But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.
Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.
Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.
My Side of Typical
Tuesday, June 18, 2013
Sunday, May 26, 2013
Living in Fear, the Sequel
I wrote a blog the other day about living in fear. Here's is a perfect example of what I was talking about:
Bambam had practice tonight for Special Olympics golf. He LOVES golf. He would spend all day hitting golf balls, to the point of blisters on his hands. But I'm getting off topic.
Tonight as he was practicing on the driving range, he was hitting his driver. (quite well I might add) and in one swing, the head of his club flew off and landed about 100 feet out into the driving range. He glanced at me for maybe a nono-second before bolting out onto the driving range yelling "I need dat, I need dat! Dat mine!". And my heart about stopped.
Lined up across the driving range were about 20 other special olympians, all adults, hitting balls with various clubs right in the direction of my son. The coaches all started yelling "Stop! No one hit any balls! Stop hitting balls!" as I was sprinting towards Bambam. By the time I got to him, he had the club head firmly in his grib and was looking at me wondering why everyone was freaking out. That kid is fast.
As I dragged him off the range I tried to explain that he couldn't run out there, it was dangerous, he could get hit by golf balls and get hurt. But I'm not sure he understood. He did finally repeat "doan go out dere?" No son, don't go out there.
And people wonder why I have grey hair. I think I need a drink.
Bambam had practice tonight for Special Olympics golf. He LOVES golf. He would spend all day hitting golf balls, to the point of blisters on his hands. But I'm getting off topic.
Tonight as he was practicing on the driving range, he was hitting his driver. (quite well I might add) and in one swing, the head of his club flew off and landed about 100 feet out into the driving range. He glanced at me for maybe a nono-second before bolting out onto the driving range yelling "I need dat, I need dat! Dat mine!". And my heart about stopped.
Lined up across the driving range were about 20 other special olympians, all adults, hitting balls with various clubs right in the direction of my son. The coaches all started yelling "Stop! No one hit any balls! Stop hitting balls!" as I was sprinting towards Bambam. By the time I got to him, he had the club head firmly in his grib and was looking at me wondering why everyone was freaking out. That kid is fast.
As I dragged him off the range I tried to explain that he couldn't run out there, it was dangerous, he could get hit by golf balls and get hurt. But I'm not sure he understood. He did finally repeat "doan go out dere?" No son, don't go out there.
And people wonder why I have grey hair. I think I need a drink.
Monday, May 20, 2013
Living in Fear
The story of Mikaela Lynch grips my heart. It squeezes it until I feel like I can't breath. This is the story of my nightmares. Like so many parents of children with autism, I fear not being able to protect my child at all times.
Although Bambam is verbal, can tell you his name, Mr. Fixit's name, my name, the street he lives on (although not the house number for fear he'll share it with every stranger he meets), he still has no clear recognition of danger. He does not understand natural consequences. He is impulsive, bolts sometimes for no apparent reason. And like many, many autistic kids, he loves water. The combination of these things gives me nightmares. Literally. Many nights I've woken up in a cold sweat, and I tip toe into Bambam's room to touch his sweet face to reassure myself that he is fine. I stand there and listen to his even breathing.
It is an almost oppressive responsibility to keep someone safe that doesn't understand cause and effect, that is extremely impulsive. Who will bolt across a parking lot without looking. Who will jump into a pool without knowing how deep it is (and he can't yet swim, after 2 years of swimming lessons). Who will talk to any stranger in the store. When he looks over the railing of a bridge or a deck, someone always holds the back of him. He leans so far over... I cannot even finish the sentence.
It is frightening. It is overwhelming. I try not to think about it. And then I read a story like Mikaela's. And my heart breaks for her family. And I pray for their strength and peace. I pray that others will offer them support and understanding. I pray for all the other parents of autistic kids who's nightmares have been rekindled just like mine.
Although Bambam is verbal, can tell you his name, Mr. Fixit's name, my name, the street he lives on (although not the house number for fear he'll share it with every stranger he meets), he still has no clear recognition of danger. He does not understand natural consequences. He is impulsive, bolts sometimes for no apparent reason. And like many, many autistic kids, he loves water. The combination of these things gives me nightmares. Literally. Many nights I've woken up in a cold sweat, and I tip toe into Bambam's room to touch his sweet face to reassure myself that he is fine. I stand there and listen to his even breathing.
It is an almost oppressive responsibility to keep someone safe that doesn't understand cause and effect, that is extremely impulsive. Who will bolt across a parking lot without looking. Who will jump into a pool without knowing how deep it is (and he can't yet swim, after 2 years of swimming lessons). Who will talk to any stranger in the store. When he looks over the railing of a bridge or a deck, someone always holds the back of him. He leans so far over... I cannot even finish the sentence.
It is frightening. It is overwhelming. I try not to think about it. And then I read a story like Mikaela's. And my heart breaks for her family. And I pray for their strength and peace. I pray that others will offer them support and understanding. I pray for all the other parents of autistic kids who's nightmares have been rekindled just like mine.
Sunday, May 19, 2013
30 Days of Autism
I'm often asked what its like to raise an autistic child. There is no quick way to answer that question. The answer I give probably depends on the day. Each day, week, month is different. I'm never sure what to expect. As a way to answer the question, I've decided to write something everyday for a month about what its like raising my autistic child. Autism Awareness month seemed like an appropriate month for this project. So, here goes...
April 1: No April fools day jokes, he doesn't understand them. Bambam is extremely literal and takes everything at face value. Jokes simply don't register. Just another day in our household.
April 2: Today is World Autism Awareness/Acceptance Day. So we changed the light bulbs in front of our house to blue ones to join the "Light it up Blue" for autism campaign. Bambam and I also made cookies with blue frosting to take to his teachers and aids at school. We are so very grateful for all of them.
April 3: Bambam's class had a field trip today. In order for Bambam to go on field trips with his class, I have to go with him. Since we never know how he will respond to a new situation, we always need to have a quick exit plan available. So, I follow the school bus in my car and if necessary, I leave with him when needed. Today was one of those days. He lasted all of about 2 minutes before the "school today, go to school, go see E, its E time, its Phil time...." started. He just couldn't get past the fact that Wednesday is a school day and he should be at school doing his work with Mrs. E and Phil. There is no distracting this kid when he gets stuck on an idea. So, we cut our losses and headed back to school. On the bright side, I only missed 2 hours of work instead of 4.
April 4: Today is STAR Sports day. Bambam participates in a recreational sports league for kids with developmental disabilities. He LOVES it. And the volunteers are amazing, all college kids. He gets to run around kicking balls, hitting balls, playing with other kids and volunteers while I get an hour to sit and watch and talk to other moms who speak my language. Its a win/win. One of the things I like about having a special needs child is the ability to see goodness in this world that I otherwise wouldn't see. These college kids really are awesome. Every day heroes is what we call them.
April 5: Some days 8:00 pm can't come fast enough. Some days its just really hard to listen to or talk about the same damn airplane for the 864th time that day. Some days I just have to say "I'm not talking about it anymore, I'm done." And then I hear a little voice saying "I'm not talking about the airplane, I'm not talking about the airplane." I love his tenacity. But really, that isn't much better. Can't we talk about something else, anything else? Please?
April 6: Med changes suck. We are trying a new dosage of one of Bambam's medications. And he's not responding well. He is uncomfortable in his own skin. That's the only way I can describe it. And its awful to watch. We are supposed to give it a week. We are on day 3. I'm not sure we will make it a week. So hard to watch my baby struggle. (we lasted 4 days, then went back to his old dosage)
April 7: Its raining today, so we're stuck inside...all day. Not a good combination for a child who needs to run and jump and play large. That is why we have a small trampoline in our living room, where the coffee table used to be. Yes, our front room advertises that we are a special needs household. And right now I'm watching Bambam jump from the trampoline into a bean bag chair a few feet away and yell "splash" when he lands. Over and over and over again.
April 8: More testing for Bambam's GI issues. For the past 3 days I've been scraping poo (yes I said poo) from his pull ups to place in small vials. 3 times a day for 3 days. (yes, he does poo that often) Then I overnight FedEx'ed the "package" to the lab. You really haven't lived until you've scraped poo from a pull up. Just a day in the life.
April 9: Bambam has sharing at school today. The topic is "what I did over spring break". So we took pictures of our activities at the Fun House and made a poster using the pictures and simple captions. We practiced over and over. I'm hoping he'll actually get up in front of his class and do it. I will never give up trying and presenting him with opportunities to grow.
April 10: An example of Bambam's struggles with language: Driving home we saw a teenager walking up the hill.
Bambam: What is that?
Me: What?
Bambam: That boy.
Me: Who is that. When its a person you say 'who is that'.
Bambam: I don't know.
Me: Can you say 'who is that?'
Bambam: I don't know!
Its funny and a little heartbreaking at the same time. I felt like I was in the Laurel and Hardy "Who's on First" skit. But he really doesn't understand. And never repeats what I'm trying to get him to say. It can be frustrating. Language is a puzzle for him.
April 11: Bambam wakes up happy every morning, eager to start the day. We are fortunate that we do not have the anger and aggression that can be common with autism. He's a happy, content child who seems to be unaware that he is "different". I pray everyday that this stays with him his whole life. Sometimes awareness can be devastating.
April 12: Today is Friday. The third day of no school this week, it was a short week for conferences. And Bambam is NOT happy about it. He loves school and thrives on consistency. We just recently got to where he understood that there was no school on the weekends, and accepted it. But non-school days during the week throw him into a tizzy. All day long I hear "I go school today?" I've probably answered that question 100 times today. Patience, patience, patience. And the ability to have the same conversation multiple times a day. That is what is needed to raise my autistic child.
April 13: We had Bambam's spring conference yesterday at school. Oh, where to begin. His conferences are nothing like what we were used to. Typical measures for a child his age just don't apply. He's behind academically, socially, emotionally, in every way. If it weren't for the great people and educators that surround him at school, these meetings would be so much harder. But we focus on his improvements, no matter how small. And they always celebrate Ryan for who he is, where he is, and what he has to offer.
April 14: The iPad. Thank God for the iPad. There are days when we use it as a crutch and let Bambam watch his favorite videos over and over. I know, its not the best thing for him. But some days, we all just need to step back, take a deep breath, and relax in front of a screen. I may not win parent of the year, but we will survive.
April 15: Tax day. Having a special needs child means an extra deduction on our state taxes. But don't get all jealous. It also means itemizing all the out of pocket medical costs to deduct on our federal taxes. It's thousands and thousands of dollars. Autism is expensive.
April 16: Today Bambam pulled out his loose tooth. It was bothering him that it was loose, that's not the way it is "supposed to be". He doesn't like things that are out of the ordinary, he wants them to always be the same. So no loose tooth, simply pull it out and be done with it. And when asked if he wanted to look at his new toothless smile in the mirror he responded "naw, wanna go pway outside."
April 17: According to Bambam's aid, he can read several sight words. Who knew?!?! That child does not voluntarily show you what he can do. EVER. We've always said that he knows and can do so much more than he lets on. And it makes things so hard. How do you know what to work on if you don't know what he can do?
April 18: Bambam had STAR Sports today. But there were double the kids as usual. It was very noisy and visually chaotic. And to make it even worse, his usual aid "Sam" was not there. Bambam really struggled. He is hypersensitive to noise and visual stimulation. He spent much of the hour throwing himself on the ground or running into the walls. This deep pressure impact helps to calm him. Its one of the ways he tries to self regulate (instead of using his words or other more accepted calming techniques), but it is painful to watch and scary for those who don't know and understand. Sigh.
April 19: We're off to the Fun House for the weekend. But we don't tell Bambam until about 10 minutes before we leave. He cannot handle anticipation; has virtually no self regulation. If he knows ahead of time, he will perseverate on going to the fun house all during school, getting nothing else done. "Go to Fun House now?" will be uttered by him every 30 seconds until we leave.
April 20: So thankful we have the Fun House. Bambam loves it. To him, it is an extension of home, he's been going there since he was 11 days old at least once a month. Without it, we would never have a vacation. He does not do well in new situations so hotels are out. Day trips to new places are also hard. When we attempted a trip to the aquarium last summer, he lasted 10 minutes. We haven't yet tried the zoo. But at the Fun House we go to the airport, the Lodge, the Village, the river, the pool, etc. And he loves it as he knows all these places and is comfortable.
April 21: Motor Planning is difficult for Bambam. At 7 years old, he still cannot peddle a bike. And I'm not talking about balance and riding without training wheels. I mean he cannot get his legs and feet to push the peddles around in a forward motion, one leg push down, one leg pull up. He sits on a tag along bike behind Mr. Fixit and just rests his feet on the peddles. Mr. Fixit pulls all 65 pounds of him and the tag along bike, pretty much dead weight. We work on this weekly. Bambam got a new bile for his birthday. He sits on it, pushes it around with his feet on the ground, but cannot peddle. I crouch over behind the bike with my hands on his feet on the peddles and maneuver his feet around. It is not easy, or fun. But my kid will eventually learn how to ride a bike, dammit.
April 22: It's Special Needs Ride Night! The local Sheriff's Mounted Posse hosts a ride for special needs kids twice a year. The kids get to ride the horses lead around the arena by the deputies. It's awesome. And they take a picture in front of a green screen and then insert different backgrounds. We have one showing a cattle roundup, and an old western town backdrop. It's very fun. It takes some time and initiative, but there are many opportunities for special needs kids if you go looking. They are different opportunities than "typical" kids have, but they make for great memories just the same.
April 23: OMG. After 7 years you'd think this would no longer surprise me. The BLOWOUT. Like many kids with autism, Bambam has major GI issues. As a toddler and preschooler, it was not unusual for him to wake up screaming bloody murder in the middle of the night several nights a week from "tummy trouble". Thankfully, those days are gone. But, he still struggles with his bowels. Meaning, he doesn't have control. He's either constipated or has diarrhea. Sometimes he will go several days without a BM and then have a major blow out. I've never seen anything like it before. There is poop everywhere. Down his legs, in his shoes, up his back to his shoulder blades (its even been in his hair), up his front to his belly button, squishing out everywhere. Its not uncommon to just throw away whatever he was wearing, I don't think I could get it clean. And then I dump him in the shower. As he gets older, it gets more disgusting. If we could only get the BM's under control....
April 24: The weather is getting nicer and we went to the park after school. Since I pick Bambam up an hour early from school everyday, the park was empty when we got there. And he had a great time flying his glider, swinging, playing on the equipment. But no sand. I don't let him play in the huge sandbox. I know, bad mom. But when I look at it all I see is a great big litter box for all the neighborhood cats. And he still mouths things, including his fingers. Ew, just can't do it. But he loves the park and has a great time. Until all the other kids arrive. Then my bubbly, laughing, playing child gets quiet and comes to sit next to me and watches the other kids playing tag together on the equipment. And it breaks my heart as I watch him watching the other kids longingly. And not know how to join in. And I ask him if he wants to play with the other kids. And he hesitates .... before he answers "no, go home now". And I want to cry.
April 25: We are having some drywall repaired on the ceiling in our family room. So everything had to be removed and put in other rooms. So our really big plant (tree?) that is usually in the corner of the family room is now against the stairs in the entry hall and everyone has to walk around its huge leaves in the hallway and on the stairs. And one really big, beautiful leaf was in Bambam's way coming down the stairs. So he pulled it off. Not out of anger or spite or being mischievous, just because it was in his way. He was so surprised that I was mad. If something is in your way, just get rid of it. Logical. But not necessarily the right thing to do. No grey in his world, just black and white.
April 26: One of Bambam's meds is a stimulant for his ADHD. It is considered a controlled substance. So, every 30 days I have to go by the doctor's office to pick up a script and take it to the pharmacy. Today was the day this month. Such a pain.
April 27: Bambam has terrible eczema on his feet. Its so bad that his feet and toes crack and peel and bleed and look like they are rotting and going to fall off. Its really disgusting. And I've tried everything. Every night after he is asleep, I creep back into his bedroom and slather his feet with special cream and then put on socks. It helps, but does not cure the problem. We are working with a new holistic doctor to see if we can't find the cause.
April 28: Bambam started Special Olympics golf today. He LOVES golf. Started hitting a golf ball when he was 3 years old. The summer he was 5 he broke the sliding glass door hitting a golf ball into it. From then on it has been wiffle balls only in the back yard. So we thought we'd try Special Olympics golf. He's the only kid. There is no one close to his age, they are all adults. But he does not care. He gets to hit golf balls. And hit he does. One after another. Until there are blisters on his hands. Until we tell him he has to stop.
April 29: Something triggered Bambam's anxiety tonight. I'm not even sure what. But at 7:00 he wanted to go to bed. Bed is his safe place, his comfort. When he is really anxious, when his "fight or flight" response has been triggered, he wants to go to bed. In the past I've not been able to calm him, he has not sought comfort from me or anyone else. He goes to bed with his heavy covers and grinds his teeth. But tonight, tonight my boy was laying in his bed and I was sitting beside him in the rocking chair and he held out his hand to me and said "hold hands". He reached out to me for comfort. My boy sought comfort from me for the first time. So I held his hand, and with my other hand I rubbed the back of his hand, his arm, his back. I tried to impart some of my strength into him, rub out some of his stress and anxiety. And in time he fell into a peacefull sleep. My son reached out to me for comfort tonight. Little miracles are amazing.
April 30: This boy is amazing. He is joyful. He is funny. He is loving. He is affectionate. He is athletic. He is tall. He is gentle. He is sweet. He is strong. He is fast. He is pesisitant. He is tenacious. He is also autistic. But autism does not define him. It is just one part of him. One of many, many parts. He is beautiful.
Note: Being as technologically inept as I am, I thought this had published on April 30th. Oh well, better late then never. Happy Autism Awareness month, about 20 days late. :)
April 1: No April fools day jokes, he doesn't understand them. Bambam is extremely literal and takes everything at face value. Jokes simply don't register. Just another day in our household.
April 2: Today is World Autism Awareness/Acceptance Day. So we changed the light bulbs in front of our house to blue ones to join the "Light it up Blue" for autism campaign. Bambam and I also made cookies with blue frosting to take to his teachers and aids at school. We are so very grateful for all of them.
April 3: Bambam's class had a field trip today. In order for Bambam to go on field trips with his class, I have to go with him. Since we never know how he will respond to a new situation, we always need to have a quick exit plan available. So, I follow the school bus in my car and if necessary, I leave with him when needed. Today was one of those days. He lasted all of about 2 minutes before the "school today, go to school, go see E, its E time, its Phil time...." started. He just couldn't get past the fact that Wednesday is a school day and he should be at school doing his work with Mrs. E and Phil. There is no distracting this kid when he gets stuck on an idea. So, we cut our losses and headed back to school. On the bright side, I only missed 2 hours of work instead of 4.
April 4: Today is STAR Sports day. Bambam participates in a recreational sports league for kids with developmental disabilities. He LOVES it. And the volunteers are amazing, all college kids. He gets to run around kicking balls, hitting balls, playing with other kids and volunteers while I get an hour to sit and watch and talk to other moms who speak my language. Its a win/win. One of the things I like about having a special needs child is the ability to see goodness in this world that I otherwise wouldn't see. These college kids really are awesome. Every day heroes is what we call them.
April 5: Some days 8:00 pm can't come fast enough. Some days its just really hard to listen to or talk about the same damn airplane for the 864th time that day. Some days I just have to say "I'm not talking about it anymore, I'm done." And then I hear a little voice saying "I'm not talking about the airplane, I'm not talking about the airplane." I love his tenacity. But really, that isn't much better. Can't we talk about something else, anything else? Please?
April 6: Med changes suck. We are trying a new dosage of one of Bambam's medications. And he's not responding well. He is uncomfortable in his own skin. That's the only way I can describe it. And its awful to watch. We are supposed to give it a week. We are on day 3. I'm not sure we will make it a week. So hard to watch my baby struggle. (we lasted 4 days, then went back to his old dosage)
April 7: Its raining today, so we're stuck inside...all day. Not a good combination for a child who needs to run and jump and play large. That is why we have a small trampoline in our living room, where the coffee table used to be. Yes, our front room advertises that we are a special needs household. And right now I'm watching Bambam jump from the trampoline into a bean bag chair a few feet away and yell "splash" when he lands. Over and over and over again.
April 8: More testing for Bambam's GI issues. For the past 3 days I've been scraping poo (yes I said poo) from his pull ups to place in small vials. 3 times a day for 3 days. (yes, he does poo that often) Then I overnight FedEx'ed the "package" to the lab. You really haven't lived until you've scraped poo from a pull up. Just a day in the life.
April 9: Bambam has sharing at school today. The topic is "what I did over spring break". So we took pictures of our activities at the Fun House and made a poster using the pictures and simple captions. We practiced over and over. I'm hoping he'll actually get up in front of his class and do it. I will never give up trying and presenting him with opportunities to grow.
April 10: An example of Bambam's struggles with language: Driving home we saw a teenager walking up the hill.
Bambam: What is that?
Me: What?
Bambam: That boy.
Me: Who is that. When its a person you say 'who is that'.
Bambam: I don't know.
Me: Can you say 'who is that?'
Bambam: I don't know!
Its funny and a little heartbreaking at the same time. I felt like I was in the Laurel and Hardy "Who's on First" skit. But he really doesn't understand. And never repeats what I'm trying to get him to say. It can be frustrating. Language is a puzzle for him.
April 11: Bambam wakes up happy every morning, eager to start the day. We are fortunate that we do not have the anger and aggression that can be common with autism. He's a happy, content child who seems to be unaware that he is "different". I pray everyday that this stays with him his whole life. Sometimes awareness can be devastating.
April 12: Today is Friday. The third day of no school this week, it was a short week for conferences. And Bambam is NOT happy about it. He loves school and thrives on consistency. We just recently got to where he understood that there was no school on the weekends, and accepted it. But non-school days during the week throw him into a tizzy. All day long I hear "I go school today?" I've probably answered that question 100 times today. Patience, patience, patience. And the ability to have the same conversation multiple times a day. That is what is needed to raise my autistic child.
April 13: We had Bambam's spring conference yesterday at school. Oh, where to begin. His conferences are nothing like what we were used to. Typical measures for a child his age just don't apply. He's behind academically, socially, emotionally, in every way. If it weren't for the great people and educators that surround him at school, these meetings would be so much harder. But we focus on his improvements, no matter how small. And they always celebrate Ryan for who he is, where he is, and what he has to offer.
April 14: The iPad. Thank God for the iPad. There are days when we use it as a crutch and let Bambam watch his favorite videos over and over. I know, its not the best thing for him. But some days, we all just need to step back, take a deep breath, and relax in front of a screen. I may not win parent of the year, but we will survive.
April 15: Tax day. Having a special needs child means an extra deduction on our state taxes. But don't get all jealous. It also means itemizing all the out of pocket medical costs to deduct on our federal taxes. It's thousands and thousands of dollars. Autism is expensive.
April 16: Today Bambam pulled out his loose tooth. It was bothering him that it was loose, that's not the way it is "supposed to be". He doesn't like things that are out of the ordinary, he wants them to always be the same. So no loose tooth, simply pull it out and be done with it. And when asked if he wanted to look at his new toothless smile in the mirror he responded "naw, wanna go pway outside."
April 17: According to Bambam's aid, he can read several sight words. Who knew?!?! That child does not voluntarily show you what he can do. EVER. We've always said that he knows and can do so much more than he lets on. And it makes things so hard. How do you know what to work on if you don't know what he can do?
April 18: Bambam had STAR Sports today. But there were double the kids as usual. It was very noisy and visually chaotic. And to make it even worse, his usual aid "Sam" was not there. Bambam really struggled. He is hypersensitive to noise and visual stimulation. He spent much of the hour throwing himself on the ground or running into the walls. This deep pressure impact helps to calm him. Its one of the ways he tries to self regulate (instead of using his words or other more accepted calming techniques), but it is painful to watch and scary for those who don't know and understand. Sigh.
April 19: We're off to the Fun House for the weekend. But we don't tell Bambam until about 10 minutes before we leave. He cannot handle anticipation; has virtually no self regulation. If he knows ahead of time, he will perseverate on going to the fun house all during school, getting nothing else done. "Go to Fun House now?" will be uttered by him every 30 seconds until we leave.
April 20: So thankful we have the Fun House. Bambam loves it. To him, it is an extension of home, he's been going there since he was 11 days old at least once a month. Without it, we would never have a vacation. He does not do well in new situations so hotels are out. Day trips to new places are also hard. When we attempted a trip to the aquarium last summer, he lasted 10 minutes. We haven't yet tried the zoo. But at the Fun House we go to the airport, the Lodge, the Village, the river, the pool, etc. And he loves it as he knows all these places and is comfortable.
April 21: Motor Planning is difficult for Bambam. At 7 years old, he still cannot peddle a bike. And I'm not talking about balance and riding without training wheels. I mean he cannot get his legs and feet to push the peddles around in a forward motion, one leg push down, one leg pull up. He sits on a tag along bike behind Mr. Fixit and just rests his feet on the peddles. Mr. Fixit pulls all 65 pounds of him and the tag along bike, pretty much dead weight. We work on this weekly. Bambam got a new bile for his birthday. He sits on it, pushes it around with his feet on the ground, but cannot peddle. I crouch over behind the bike with my hands on his feet on the peddles and maneuver his feet around. It is not easy, or fun. But my kid will eventually learn how to ride a bike, dammit.
April 22: It's Special Needs Ride Night! The local Sheriff's Mounted Posse hosts a ride for special needs kids twice a year. The kids get to ride the horses lead around the arena by the deputies. It's awesome. And they take a picture in front of a green screen and then insert different backgrounds. We have one showing a cattle roundup, and an old western town backdrop. It's very fun. It takes some time and initiative, but there are many opportunities for special needs kids if you go looking. They are different opportunities than "typical" kids have, but they make for great memories just the same.
April 23: OMG. After 7 years you'd think this would no longer surprise me. The BLOWOUT. Like many kids with autism, Bambam has major GI issues. As a toddler and preschooler, it was not unusual for him to wake up screaming bloody murder in the middle of the night several nights a week from "tummy trouble". Thankfully, those days are gone. But, he still struggles with his bowels. Meaning, he doesn't have control. He's either constipated or has diarrhea. Sometimes he will go several days without a BM and then have a major blow out. I've never seen anything like it before. There is poop everywhere. Down his legs, in his shoes, up his back to his shoulder blades (its even been in his hair), up his front to his belly button, squishing out everywhere. Its not uncommon to just throw away whatever he was wearing, I don't think I could get it clean. And then I dump him in the shower. As he gets older, it gets more disgusting. If we could only get the BM's under control....
April 24: The weather is getting nicer and we went to the park after school. Since I pick Bambam up an hour early from school everyday, the park was empty when we got there. And he had a great time flying his glider, swinging, playing on the equipment. But no sand. I don't let him play in the huge sandbox. I know, bad mom. But when I look at it all I see is a great big litter box for all the neighborhood cats. And he still mouths things, including his fingers. Ew, just can't do it. But he loves the park and has a great time. Until all the other kids arrive. Then my bubbly, laughing, playing child gets quiet and comes to sit next to me and watches the other kids playing tag together on the equipment. And it breaks my heart as I watch him watching the other kids longingly. And not know how to join in. And I ask him if he wants to play with the other kids. And he hesitates .... before he answers "no, go home now". And I want to cry.
April 25: We are having some drywall repaired on the ceiling in our family room. So everything had to be removed and put in other rooms. So our really big plant (tree?) that is usually in the corner of the family room is now against the stairs in the entry hall and everyone has to walk around its huge leaves in the hallway and on the stairs. And one really big, beautiful leaf was in Bambam's way coming down the stairs. So he pulled it off. Not out of anger or spite or being mischievous, just because it was in his way. He was so surprised that I was mad. If something is in your way, just get rid of it. Logical. But not necessarily the right thing to do. No grey in his world, just black and white.
April 26: One of Bambam's meds is a stimulant for his ADHD. It is considered a controlled substance. So, every 30 days I have to go by the doctor's office to pick up a script and take it to the pharmacy. Today was the day this month. Such a pain.
April 27: Bambam has terrible eczema on his feet. Its so bad that his feet and toes crack and peel and bleed and look like they are rotting and going to fall off. Its really disgusting. And I've tried everything. Every night after he is asleep, I creep back into his bedroom and slather his feet with special cream and then put on socks. It helps, but does not cure the problem. We are working with a new holistic doctor to see if we can't find the cause.
April 28: Bambam started Special Olympics golf today. He LOVES golf. Started hitting a golf ball when he was 3 years old. The summer he was 5 he broke the sliding glass door hitting a golf ball into it. From then on it has been wiffle balls only in the back yard. So we thought we'd try Special Olympics golf. He's the only kid. There is no one close to his age, they are all adults. But he does not care. He gets to hit golf balls. And hit he does. One after another. Until there are blisters on his hands. Until we tell him he has to stop.
April 29: Something triggered Bambam's anxiety tonight. I'm not even sure what. But at 7:00 he wanted to go to bed. Bed is his safe place, his comfort. When he is really anxious, when his "fight or flight" response has been triggered, he wants to go to bed. In the past I've not been able to calm him, he has not sought comfort from me or anyone else. He goes to bed with his heavy covers and grinds his teeth. But tonight, tonight my boy was laying in his bed and I was sitting beside him in the rocking chair and he held out his hand to me and said "hold hands". He reached out to me for comfort. My boy sought comfort from me for the first time. So I held his hand, and with my other hand I rubbed the back of his hand, his arm, his back. I tried to impart some of my strength into him, rub out some of his stress and anxiety. And in time he fell into a peacefull sleep. My son reached out to me for comfort tonight. Little miracles are amazing.
April 30: This boy is amazing. He is joyful. He is funny. He is loving. He is affectionate. He is athletic. He is tall. He is gentle. He is sweet. He is strong. He is fast. He is pesisitant. He is tenacious. He is also autistic. But autism does not define him. It is just one part of him. One of many, many parts. He is beautiful.
Note: Being as technologically inept as I am, I thought this had published on April 30th. Oh well, better late then never. Happy Autism Awareness month, about 20 days late. :)
Thursday, March 21, 2013
Miracles
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
I read this on another autism mom's blog today and it struck a cord with me. I've seen miracles.
I've seen big miracles. When Miracle Boy was three months old, he had emergency open heart surgery. He was in surgery for 11 hours. We were told he had a less than 1% chance of surviving. I'll stop here and let that sink in. Less.Than.One.Percent. As in almost no chance of survival. At one point, someone (I don't remember who) told us that we would be ushered to the operating room so we could hold our infant son while they "unplugged' him and he died. To this day I do not know how I survived that. I'm amazed my heart didn't give out.
But, not only did Miracle Boy survive, he thrived. All the predictions of being a medical invalid, needing a heart transplant, having developmental delays or other effects from lack of oxygen, none of them came true. Today he is a healthy, happy, bright, promising young man. And every year when we see his cardiologist, that man simply shakes his head and says "I'm not quite sure why this young man is alive. It's not because of anything we did. I never believed in miracles until he came along." He truly is a miracle, a big one. One that happened in an instant, on an operating table, while dozens of doctors watched in disbelief. One of them told us "We had given up. And then there was a spark and his heart just started beating again." No medical explanation, a miracle pure and simple. One I'm thankful for everyday. Big miracles are easy for everyone to spot.
But I've seen little miracles too. Sometimes they are harder to see, or recognize as miracles. But this does not make them any less spectacular. Bambam is the king of little miracles. And each one of them is precious. The fact that my non-verbal 3 year old now talks in full sentances at 7, a miracle indeed. When he started finally walking at almost 2 years of age (and 35 pounds) it was a miracle. One my back is ever thankful for. Walking into his classroom and saying "hi TJ" to his classmate (with appropriate eye contact), that is a miracle. Attending a birthday party at a bounce place with 20 other kids and not only surviving but having fun and laughing, another miracle. Each one of these miracles has taken hours of hard work and determination (on everyone's part), constant coaching and exposing, leading, prodding. But, just because we work at these things, that doesn't make them any less miraculous.
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
Indeed.
I read this on another autism mom's blog today and it struck a cord with me. I've seen miracles.
I've seen big miracles. When Miracle Boy was three months old, he had emergency open heart surgery. He was in surgery for 11 hours. We were told he had a less than 1% chance of surviving. I'll stop here and let that sink in. Less.Than.One.Percent. As in almost no chance of survival. At one point, someone (I don't remember who) told us that we would be ushered to the operating room so we could hold our infant son while they "unplugged' him and he died. To this day I do not know how I survived that. I'm amazed my heart didn't give out.
But, not only did Miracle Boy survive, he thrived. All the predictions of being a medical invalid, needing a heart transplant, having developmental delays or other effects from lack of oxygen, none of them came true. Today he is a healthy, happy, bright, promising young man. And every year when we see his cardiologist, that man simply shakes his head and says "I'm not quite sure why this young man is alive. It's not because of anything we did. I never believed in miracles until he came along." He truly is a miracle, a big one. One that happened in an instant, on an operating table, while dozens of doctors watched in disbelief. One of them told us "We had given up. And then there was a spark and his heart just started beating again." No medical explanation, a miracle pure and simple. One I'm thankful for everyday. Big miracles are easy for everyone to spot.
But I've seen little miracles too. Sometimes they are harder to see, or recognize as miracles. But this does not make them any less spectacular. Bambam is the king of little miracles. And each one of them is precious. The fact that my non-verbal 3 year old now talks in full sentances at 7, a miracle indeed. When he started finally walking at almost 2 years of age (and 35 pounds) it was a miracle. One my back is ever thankful for. Walking into his classroom and saying "hi TJ" to his classmate (with appropriate eye contact), that is a miracle. Attending a birthday party at a bounce place with 20 other kids and not only surviving but having fun and laughing, another miracle. Each one of these miracles has taken hours of hard work and determination (on everyone's part), constant coaching and exposing, leading, prodding. But, just because we work at these things, that doesn't make them any less miraculous.
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
Indeed.
Wednesday, March 20, 2013
Drained
Some days I just can't do it. I'm not sure why. Either I'm exhausted, or not feeling well, or stressed more than usual, or overwhelved, or simply drained, or...or...or. I'm not sure the reason matters, but somedays I just can't be the mom I should be. I want to lock myself in my bedroom and ignore the world outside. It doesn't happen very often. But once in a while I just need time to decompress, refuel, a mental health day off. Parenting a special needs child is demanding, a 24 7 job. And every once in a while I need a few hours off...or maybe a whole day.
When Miracle Boy was 6 months old, his dad left. There is a whole long story there, but it has nothing to do with this so we'll leave it in the past. For the next 7 years, I was a single parent. And there were times when that was really tough. But honestly, it was nothing compared to parenting a special needs child. I simply cannot imagine being a single parent of a special needs child. I'm so thankful for all the support I have.
Even with all the great support I have, there are some days I just can't do it. I can't repeat my part of the same script for the 82nd time that day, or watch the same airplane video over and over and over and over.... Or, change the pull ups on my 7 year old. Some days I just need a break.
And I try not to feel too guilty for it.
When Miracle Boy was 6 months old, his dad left. There is a whole long story there, but it has nothing to do with this so we'll leave it in the past. For the next 7 years, I was a single parent. And there were times when that was really tough. But honestly, it was nothing compared to parenting a special needs child. I simply cannot imagine being a single parent of a special needs child. I'm so thankful for all the support I have.
Even with all the great support I have, there are some days I just can't do it. I can't repeat my part of the same script for the 82nd time that day, or watch the same airplane video over and over and over and over.... Or, change the pull ups on my 7 year old. Some days I just need a break.
And I try not to feel too guilty for it.
Thursday, March 7, 2013
Careful What You Wish For
When Bambam was 2.5 years old and not uttering a single work yet, I had but one single wish. If he could just talk. If he could just tell me what he needed, wanted, liked, hated, was scared of, etc our lives would be so much easier. The endless meltdowns would slow down, possibly end. It was to me the answer to everything.
With hours and hours of therapy and patience, he did eventually start speaking. And has not shut up since. I have never been around a child with such severe verbal diarrhea. That child is never quiet. He talks incessantly, and usually about one topic that he perseverates on day after day after day for weeks. The topic may change every few weeks, but after 3-4 weeks of hearing about the same biplane, or pizza delivery man, or bulldozer I'm about ready to use the pirate bullet on myself. How much is one parent expected to take?
Last weekend Miracle Boy was gone. And Bambam was obsessing over this fact. He is after all Miracle Boy's shadow. Sometimes I feel bad for that teenager as Bambam follows him all around the house. So starting at 6:30 Sunday morning Bambam started with "When brother home?" or "when brother time?" or "brother home 10 minutes?" or "brother home an hour?" or "brother home yet?" or ..... you get the idea. Every 5 minutes there was some version of this question. And he doesn't just ask the question, he has to poke you too, just to make sure he has your attention. Imagine: poke, poke, poke every 5 minutes. And he does not discriminate on where he pokes you, arm, leg, stomach, back, boob. Poke, poke poke, "brother home 10 minutes?" over and over and over again.
By 10:00 am I had locked my self in my bathroom. I know, mother of the year award. But seriously, if he poked me one more time I was going to loose it. Poke, poke, poke. If you don't think that is irritating, you are a saint.
I love that he can talk and tell us what he needs, when noises are too loud, that he likes the garbage truck, that the neighbor's dog is his friend. I love the things he says, he's funny without trying. Having him tell me that he had lunch with TJ and played with Ben at recess is beautiful to me. He's worked so long and hard so he can tell me. But silence, just a few minutes of silence, well they say its golden. I'm not sure, I don't think I've heard it in oh 4 years or so. Perhaps I should borrow his noise cancelling headphones.
With hours and hours of therapy and patience, he did eventually start speaking. And has not shut up since. I have never been around a child with such severe verbal diarrhea. That child is never quiet. He talks incessantly, and usually about one topic that he perseverates on day after day after day for weeks. The topic may change every few weeks, but after 3-4 weeks of hearing about the same biplane, or pizza delivery man, or bulldozer I'm about ready to use the pirate bullet on myself. How much is one parent expected to take?
Last weekend Miracle Boy was gone. And Bambam was obsessing over this fact. He is after all Miracle Boy's shadow. Sometimes I feel bad for that teenager as Bambam follows him all around the house. So starting at 6:30 Sunday morning Bambam started with "When brother home?" or "when brother time?" or "brother home 10 minutes?" or "brother home an hour?" or "brother home yet?" or ..... you get the idea. Every 5 minutes there was some version of this question. And he doesn't just ask the question, he has to poke you too, just to make sure he has your attention. Imagine: poke, poke, poke every 5 minutes. And he does not discriminate on where he pokes you, arm, leg, stomach, back, boob. Poke, poke poke, "brother home 10 minutes?" over and over and over again.
By 10:00 am I had locked my self in my bathroom. I know, mother of the year award. But seriously, if he poked me one more time I was going to loose it. Poke, poke, poke. If you don't think that is irritating, you are a saint.
I love that he can talk and tell us what he needs, when noises are too loud, that he likes the garbage truck, that the neighbor's dog is his friend. I love the things he says, he's funny without trying. Having him tell me that he had lunch with TJ and played with Ben at recess is beautiful to me. He's worked so long and hard so he can tell me. But silence, just a few minutes of silence, well they say its golden. I'm not sure, I don't think I've heard it in oh 4 years or so. Perhaps I should borrow his noise cancelling headphones.
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