Sometimes, as Benjamin's mother, I feel as competent as the
mother of a kid on the spectrum can be: I can predict what situations
and variables of a situation will overstimulate him and cause a
meltdown. I can zero in on those issues, prevent and manage what I can,
be prepared with mints and fidget toys and chewy tubes, explain in advance to Ben what might
happen and how he should respond, place events and activities on our
picture schedule and visual calendar. And it works out. Ben handles
the event successfully, he does not have a meltdown, and we are able to
accomplish the task in public at hand. I breathe a big sigh of relief
and can practically feel my Super Mom cape draped around my shoulders as
it unfurls in the wind.
Its not easy to pull off such a feat
A large portion of my daily life revolves around making preparations to ensure Ben
sleeps, eats, has sufficient down time, has been prepared for situations
and how he should respond, and is as prepared and able to deal with the
world outside of our home as possible. I live and breathe Asperger's
syndrome; at least, it feels that way sometimes. I make the preparations
and do the thinking ahead and the worrying, and I brace myself for
dealing with the fallout in case I am wrong
Because, believe me, sometimes I am wrong. Sometimes I am dead wrong.
Sometimes, I find myself in the middle of Target while my child bites the handle bar of the shopping cart and screams bloody murder because there is not a single male cashier at that store. And then I find myself peeling my screaming, flailing 49 pound child out of that shopping cart and stuffing him into my car and into his car seat restraints while 6 people stand around and stare at me. All while I sweat and get a shooting pain beside my eye. Not one of my finer moments, and ironically, it happened about 45 minutes after an appointment with a child psychiatrist who told me I am doing all the right things except putting him a a weighted compression vest in public situations that might cause distress. I just ordered one, by the way.
Sure,
sometimes, Ben does better than I expected. And I rejoice on the rare
occasions when this occurs. Unfortunately, and more frequently, sometimes I miss
something. I forget something or make the mistake that Ben has moved
past an issue when he hasn't. Sometimes, no matter how hard I try, I
just can't control everything that needs to be controlled. Sometimes,
despite having a large variety of snacks, that kid won't eat anything when he needs to.
Or he won't sleep. Or a place is louder than I thought or a place is
busy when I intentionally went at a time I thought it would not be. Or there are no male cashiers or waiters. Or
something doesn't go as planned And sometimes, just like any other kid,
he is just irritable or in an uncooperative mood in general, which
causes his symptoms to flare even if everything else does happen to go as planned.
And
then there is the meltdown. There is shrieking, hitting of himself,
clawing of his arms or face, kicking, biting, swiping at me or innocent
bystanders (nothing makes me want to melt into the ground with shame
more than when Ben swipes at someone else), throwing or shoving things
off of surfaces. Etcetera. Yes, really, etcetera is necessary here. He is
inconsolable and it is almost impossible to get him to hear me explain
something to him while he is melting. He might melt because he is
overwhelmed or physically in pain, because noises are too loud or people
are too close or he doesn't understand a situation, or there is just a
misunderstanding in general that sends his little stressed-out self over
the edge. Etcetera. But I can't explain those misunderstandings or
even remove him from the offensive stimuli because of that meltdown. It stops us in our tracks and freezes us in a hellish moment that I desperately want to break free of but can't.
So
it's not pretty. It frequently involves me grabbing both hands to
prevent swiping, or carrying him (while I still physically can) to
prevent kicking, and maneuvering my shrieking, flailing, 49 pound six-year-old outside or to a restroom or to the car. While everyone stares
at me, whispers about me, and/or offers unsolicited advice about
parenting and laughs about my horrific failures as a mother.
By
the way, perfect strangers who laugh at me and my child or talk about
us hatefully, just because Ben is screaming in my ear, it does not mean I
can't hear you. And sometimes, secretly, I wish he would kick you. In
the face. Or that I could. ***
Just blogging honestly, people.
This is when I feel
that Super Mom cape being ripped off my shoulders. This is when I feel
like a complete and utter failure as a mom and as a person in general.
And after I get Ben calmed down and back in the car, this is when I put
my head on my steering wheel and sob. Or climb into bed and struggle
to get myself back out of it. And I always feel guilty that Ben had a
meltdown and screamed or swiped at people, that I felt angry at him for
melting despite all my efforts to avoid it, and even that I deep down
secretly wished he had kicked the woman who called him a spoiled little
jerk in the face. It's not Ben's fault he has this syndrome. And I
suppose it's not that woman's fault she's ignorant and narrow. I was too
before I became a 7th grade teacher and had Ben, though I never would
have called anyone's kid a name or laughed at them.
I know it's not my fault. I
know I'm a good mom. I know I'm doing the best I can. I don't need that
kind of reassurance. That's not the problem. The problem is that THIS IS MY LIFE, and sometimes it makes me feel as helpless as Ben's Asperger's
makes him feel. Sometimes, it just doesn't matter how hard I try or how much I know.
Sometimes, I feel an overwhelming urge to avoid going out in public or
taking Ben to new places out of fear of a meltdown. Sometimes, the fear of them is crippling. And sometimes, I just have to vent. I don't need reassurance, just a little grace and understanding from time to time. Sometimes, I handle it gracefully and shrug it off, and that is always my goal, but sometimes I'm that woman crying on her steering wheel or peeling her kid out of the shopping cart and shoving him in the car.
I
love my son. He's sweet, smart, funny, helpful, and precious, and I wouldn't
switch kids with anyone. I'm thankful I have him and I can't imagine not
having him in my life as my child. I love my son.
Asperger's, on the other hand, SUCKS.
***There
are countless people who have not done such things. Many people,
strangers and otherwise, have helped me. Thank you to my family and
friends who help me maneuver Ben or simply understand what's up, and
thank you to the strangers who have retrieved my paper towels and
returned them to my cart or slipped my phone or car keys back into my
purse, thoughtfully, silently, and often without the appropriate
thanks.
Tuesday, July 24, 2012
Monday, June 11, 2012
Are you mad at me?
Poor little neglected blog. It's not that I don't have topics to blog about. I always have a lot to say about a lot of things in general, and that is true regarding my child as well. Several drafts have been started and abandoned over the last few months, and I will get back to them and flesh them out, but the last six weeks or so of school sucked the life right out of me, y'all. Now school is out for the summer, and I am in recovery (meaning still waaay tired), but I had a light bulb pop on today and it is worthy of exploration.
For the last few months, Ben has been asking a question very frequently: Are you mad at me?
At first, I was thrilled that my son was seeking to identify an emotion in others. That's a big deal. In some kids on the spectrum, it never happens. We have books about emotions and iPad apps about emotions and the accompanying facial expressions, and we talk about it all the time. I am constantly asking Ben: Are you scared? Worried? Nervous? Happy? Sad? Angry? Frustrated? Excited? And using his answers as both an assessment of how I need to adjust a situation to avoid a meltdown (as I am constantly on meltdown patrol) and also as an opportunity to teach him how to adjust and deal with his feelings in an appropriate way.
But the frequency of that question increased from asking, "Are you mad at me?" when he was being reprimanded to any time I got upset or frustrated (at traffic, breaking my fingernail off into the quick, a gallon jug of water busting all over the kitchen floor, etc.) and then he began asking others if they were mad at him as well. I began to worry. Had something happened to upset him at some point during his day, which is a myriad of different teachers, aids, therapists, daycare workers, etc? Was Ben afraid of someone's anger for some reason?
One of my biggest fears is that something will happen to him--someone will hurt him or take advantage of his challenges regarding expressing himself--and he won't be able to tell us. So far, I don't think this has actually happened, though we did have a scare last fall when he had some mysterious bruises on his arm. Thank goodness for cameras in daycares, because we were able to determine that it was an accident.
Ben said he was not scared, that no one had been mad at him, but if he doesn't completely understand the question, his standard response is no, so I still worried. Of course I did. How could I not?
Then we began to notice that Ben always asks, "Are you mad at me?" when he has done something he knows is wrong or has just been told not to do. Not just on that occasion-- others as well--but definitely when it arose. Was it manipulation--an attempt to get out of trouble? We know he is capable of that. It's cute when he says, "I like chocolate!" when asks about what he would like to eat, but it throws a wrench into dinner negotiations, and I do believe it is meant to do so. Was this question an attempt to get out of a consequence? But still, sometimes he is genuinely worried when he asks it: his voice breaks or his lip wavers, and I know he is upset.
It's hard to maneuver your way through such vague, abstract issues with kids on the spectrum, so I just didn't know. I began using it as a chance to explain about other emotions that might look like anger and to explain to him that yes, when he does what he is told not to do, I do get angry at him but that I also still love him, as I always love him, mad or not. But then this morning, I had a light bulb--you know, when you aren't thinking about something you've been fretting over and suddenly the answer is crystal clear and you wonder why it didn't occur to you before.
Ben is having an extra occupational therapy appointment each week this summer, and while waiting for him this morning, I read part of House Rules by Jodi Picoult, who is one of my guilty pleasures. It's a novel centered around a main character who is an 18-year-old boy (or man, I guess) with Asperger's Syndrome. I am not far enough into the book to recommend it or not, but the mother character was explaining how the world is completely black or white for her son--something is either right or wrong, a rule either applies 100% of the time or not at all-- and she mentioned that he asked her, "Are you mad at me?" Before she answered, she explained this:
"I think that's the attribute I miss seeing the most in my son: empathy. He worries about hurting my feelings, or making me upset, but that's not the same as viscerally feeling someone's pain. Over the years, he's learned empathy the way I might learn Greek--translating an image or situation in the clearinghouse of his mind and trying to attach the appropriate sentiment to it, but never really fluent in the language."
And that's when the light bulb flashed. A hallmark of Autism and Asperger's is missing social cues in others. Emotions are shown to others by way of these: a raised voice, facial expressions, looking drawn or tired, or that vein that always stuck out of my father's forehead to accompany his clenched jaw when I was being a teenaged terror. Ben doesn't read those social cues fluently. We have taught him about them, but he doesn't naturally pick up on them. When he asks, it's because he doesn't know; because he can't distinguish the cues for my anger at him for standing on the dining room table for the fifth time in five minutes from the cues for my pain when I rip off part of a fingernail in the car door.
He asks because he doesn't know otherwise. It's as simple as that, and this is good news. It's a coping mechanism, and that is the way our kids with Autism and Asperger's learn to navigate the world with people who are neurotypical.
Will he ever inherently understand and be able to pick up on someone's emotions without asking? I don't know. We will continue to work with him always, of course, and I can hope for it, but I am just as hopeful that he will continue to use that coping mechanism and that the world will try to understand why he needs to do so.
For the last few months, Ben has been asking a question very frequently: Are you mad at me?
At first, I was thrilled that my son was seeking to identify an emotion in others. That's a big deal. In some kids on the spectrum, it never happens. We have books about emotions and iPad apps about emotions and the accompanying facial expressions, and we talk about it all the time. I am constantly asking Ben: Are you scared? Worried? Nervous? Happy? Sad? Angry? Frustrated? Excited? And using his answers as both an assessment of how I need to adjust a situation to avoid a meltdown (as I am constantly on meltdown patrol) and also as an opportunity to teach him how to adjust and deal with his feelings in an appropriate way.
But the frequency of that question increased from asking, "Are you mad at me?" when he was being reprimanded to any time I got upset or frustrated (at traffic, breaking my fingernail off into the quick, a gallon jug of water busting all over the kitchen floor, etc.) and then he began asking others if they were mad at him as well. I began to worry. Had something happened to upset him at some point during his day, which is a myriad of different teachers, aids, therapists, daycare workers, etc? Was Ben afraid of someone's anger for some reason?
One of my biggest fears is that something will happen to him--someone will hurt him or take advantage of his challenges regarding expressing himself--and he won't be able to tell us. So far, I don't think this has actually happened, though we did have a scare last fall when he had some mysterious bruises on his arm. Thank goodness for cameras in daycares, because we were able to determine that it was an accident.
Ben said he was not scared, that no one had been mad at him, but if he doesn't completely understand the question, his standard response is no, so I still worried. Of course I did. How could I not?
Then we began to notice that Ben always asks, "Are you mad at me?" when he has done something he knows is wrong or has just been told not to do. Not just on that occasion-- others as well--but definitely when it arose. Was it manipulation--an attempt to get out of trouble? We know he is capable of that. It's cute when he says, "I like chocolate!" when asks about what he would like to eat, but it throws a wrench into dinner negotiations, and I do believe it is meant to do so. Was this question an attempt to get out of a consequence? But still, sometimes he is genuinely worried when he asks it: his voice breaks or his lip wavers, and I know he is upset.
It's hard to maneuver your way through such vague, abstract issues with kids on the spectrum, so I just didn't know. I began using it as a chance to explain about other emotions that might look like anger and to explain to him that yes, when he does what he is told not to do, I do get angry at him but that I also still love him, as I always love him, mad or not. But then this morning, I had a light bulb--you know, when you aren't thinking about something you've been fretting over and suddenly the answer is crystal clear and you wonder why it didn't occur to you before.
Ben is having an extra occupational therapy appointment each week this summer, and while waiting for him this morning, I read part of House Rules by Jodi Picoult, who is one of my guilty pleasures. It's a novel centered around a main character who is an 18-year-old boy (or man, I guess) with Asperger's Syndrome. I am not far enough into the book to recommend it or not, but the mother character was explaining how the world is completely black or white for her son--something is either right or wrong, a rule either applies 100% of the time or not at all-- and she mentioned that he asked her, "Are you mad at me?" Before she answered, she explained this:
"I think that's the attribute I miss seeing the most in my son: empathy. He worries about hurting my feelings, or making me upset, but that's not the same as viscerally feeling someone's pain. Over the years, he's learned empathy the way I might learn Greek--translating an image or situation in the clearinghouse of his mind and trying to attach the appropriate sentiment to it, but never really fluent in the language."
And that's when the light bulb flashed. A hallmark of Autism and Asperger's is missing social cues in others. Emotions are shown to others by way of these: a raised voice, facial expressions, looking drawn or tired, or that vein that always stuck out of my father's forehead to accompany his clenched jaw when I was being a teenaged terror. Ben doesn't read those social cues fluently. We have taught him about them, but he doesn't naturally pick up on them. When he asks, it's because he doesn't know; because he can't distinguish the cues for my anger at him for standing on the dining room table for the fifth time in five minutes from the cues for my pain when I rip off part of a fingernail in the car door.
He asks because he doesn't know otherwise. It's as simple as that, and this is good news. It's a coping mechanism, and that is the way our kids with Autism and Asperger's learn to navigate the world with people who are neurotypical.
Will he ever inherently understand and be able to pick up on someone's emotions without asking? I don't know. We will continue to work with him always, of course, and I can hope for it, but I am just as hopeful that he will continue to use that coping mechanism and that the world will try to understand why he needs to do so.
Sunday, April 1, 2012
Awareness
April is Autism Awareness month, and I am ready. I have my blue bulb on the porch, blue nail polish to apply to toes later today, blue clothes for tomorrow, a week's worth of obsessive Face Book posts about Autism under my belt, and the annual disturbing stats to read and stress over. 1 in 88 children will be diagnosed somewhere on the spectrum. 1 in 54 boys. This is serious business, y'all, and it's not going away.
April is for spreading awareness to others, so I have decided to post some things I have become aware of since Ben's diagnosis in June 2010. It's been a roller coaster, of course, but I am so much wiser for it.
It's called a spectrum for a reason. Every child on the spectrum is different. Just because my kid does some things neuro-typical kids do, it doesn't mean he isn't on the spectrum. Just because your kid does some things my kid does, it doesn't mean (necessarily) that he or she IS on the spectrum. They are all so different. They have different challenges, strengths, obsessions, sensitivities, fears, interests, talents, and personalities, just like you would find in any group of children. The saying among parents of children on the spectrum is accurate: If you've met ONE child with Autism, then you have met ONE child with Autism. This is why being involved in your child's education is incredibly important. Your child will need things the other children don't need and vice versa. This leads me to something else I have learned, and I learned it the hard way.
Being an advocate for your child means (sometimes) standing up to educators. I am an educator. I am not perfect, but I do believe myself to be a good one and I know I work hard to be effective for all students. When your child enters the school system, you want to believe that everyone will work hard to do the right thing for your child, so sometimes you make the assumption that this is happening. I did all the right things. I observed his first placement, I emailed the teacher regularly, attended the meet and greet and parent night, and went to all the meetings, but Ben's needs still were not being met and I didn't know that for over a year until an ARD meeting the teacher didn't even attend when everything hit the fan.
Even after that, I consented to continue this same placement with another teacher. It became a three-hour PPCD class for my child combined with a full-day pre-school class for school district employees. I should have known right then that it would not be sufficient for my child. Why were the non-special needs children being given MORE time and education than Ben? It still does not make sense to me, and I advise avoiding such classrooms because Ben did not benefit from it and lost precious time and interventions. The teachers and aids were overrun with students and my special needs child who had just been diagnosed (both privately and by the district) had IEP's in place that could not be adequately addressed. I didn't know I could ask for another placement until I spoke with another employee of our district who had removed her Autistic child from a similar situation. They don't tell you what you can ask for, so you need to ask for everything. Don't be afraid or intimidated. If you are unhappy with your child's educational services or placement, ask questions and research until you are.
And pay close attention at those ARD's (or IEP's, as they are called in some places). Push for all of the therapy and interventions your child qualifies for and needs, and don't let them whittle down sessions or time. Read the plan before you sign it. Once, they mentioned that his speech therapy would be continued but did not say they wanted to cut it to twice a month; however, it was on the form the diagnostician filled out as she talked to me. They were displaying it on a screen on the wall, and I just happened to look up and notice that she was changing the amount right before my eyes. Had he met more than half of his speech goals? No, she replied, but they were confident he was "on his way." I stated that I would prefer to cut his speech therapy after he met goals and not before, and proceeded to lock eyes with her until she changed it back to weekly. Just because they seem pleasant and accommodating, it doesn't mean they are doing what is best for your child. Check up on everyone and everything.
Attitude adjustments. After Ben's diagnosis, part of my process of dealing with it was to learn and reflect. My mind has changed about many things, and, as I am a very opinionated person (just ask anyone), my opinions have developed, multiplied, and shifted as well. Just like with so many other things, I find I ride the fence on this one. I am NOT glad my child has Autism. I think he is a blessing, but I think it is NOT. I am far too realistic to spew a bunch of rainbows and glitter about Autism, but I also believe that it does not devalue him or make him any less capable or wonderful than any other child. I avoid sites and groups that glibly assert we should feel fortunate that our children were "blessed" with Autism because it makes them highly intelligent (though I don't believe children are intelligent because they have Autism) and unique. Gag me with a fork. This syndrome is a challenge, an obstacle to overcome; it makes our lives more difficult and it isolates my son from the rest of the world. It is not a blessing, and I wouldn't wish it on anyone.
I love my child more than anything with that to the ends of the Earth mommy love that we don't know exists until we become parents. But I hate Aspergers, even though it is a part of that same child I love so much. It's a difficult edge to dance along. I don't want to change him because I love him and think he is wonderful. But I wish he was not on the spectrum. I wish Autism did not exist. It's an emotional roller coaster that caught me by surprise.
Seek support. No matter how strong you are, this journey is easier with support. Fortunately, I have a very supportive family and Ben's dad is in his life. His dad takes him to school across town so that he doesn't have to ride the bus and have an additional transition in his day, and he takes him to private occupational therapy once a week while I am at work. We have also adjusted his parenting time so that he picks Ben up from school three times a week so that Ben is not in daycare as much.
My family has been immeasurably supportive emotionally, financially, and physically. My parents have helped with therapy and expenses, they keep him so that I get to have personal time on occasion, they pitch in when he is sick, and my extended family has been very sweet, understanding, and patient with Ben. And they all love him, no matter what.
Ben has an awesome occupational therapist and a fabulous PPCD teacher. We have a valuable parent in-home trainer who has greatly helped us, and I am surrounded by intelligent educational professionals who take the time to give me advice and point me in the right direction.
I am fortunate to have this support and I know it. Not everyone has that, and I know this as well. However, I don't know what I would do without the additional support of a group I am in on Face Book. I haven't met these women in person, but through this group, I know them all to be strong, intelligent women who have been and are where I am and understand the emotions, frustrations, challenges, fears, and joys of parenting a child on the spectrum. Despite the support system I have here, I am still the one in the trenches who lives with it 24/7 and who does the bulk of the worrying and the work. I am alone with the tantrums and sleepless nights. I am the solver of the problems, the maker of appointments, the finder of resources, and the asker of many questions until issues are resolved. Unless someone has been in these same trenches, he or she does not completely understand. It's just not possible.
If you are a parent or caretaker of a child with Autism, find people who have been in the trenches. Reach out in your community, online, to me, anywhere you can. I cannot fully explain the difference this group of ladies makes in my emotional health and ability to be a good parent and sane person. I can go to them to vent any frustration. They never undermine or dismiss an issue or problem, and they have a wide range of experiences with their own children to help guide me in the right directions. I can go there to celebrate any success, no matter how trivial it might seem to the parents of neuro-typical children and they always celebrate with me. It also gives me a place to be supportive and feel helpful, which is valuable in itself.
Autism is not just an issue for the child that has it or the family of that child. It affects everyone in the community, and with the new statistics that are out, every community will be touched by it. Be aware of people who are different but valuable, in their own world but a part of yours as well, and who may not speak but can be hurt by your words and exclusions. Embrace them, and teach your children to embrace them. It will mean more to them than you can imagine.
April is for spreading awareness to others, so I have decided to post some things I have become aware of since Ben's diagnosis in June 2010. It's been a roller coaster, of course, but I am so much wiser for it.
It's called a spectrum for a reason. Every child on the spectrum is different. Just because my kid does some things neuro-typical kids do, it doesn't mean he isn't on the spectrum. Just because your kid does some things my kid does, it doesn't mean (necessarily) that he or she IS on the spectrum. They are all so different. They have different challenges, strengths, obsessions, sensitivities, fears, interests, talents, and personalities, just like you would find in any group of children. The saying among parents of children on the spectrum is accurate: If you've met ONE child with Autism, then you have met ONE child with Autism. This is why being involved in your child's education is incredibly important. Your child will need things the other children don't need and vice versa. This leads me to something else I have learned, and I learned it the hard way.
Being an advocate for your child means (sometimes) standing up to educators. I am an educator. I am not perfect, but I do believe myself to be a good one and I know I work hard to be effective for all students. When your child enters the school system, you want to believe that everyone will work hard to do the right thing for your child, so sometimes you make the assumption that this is happening. I did all the right things. I observed his first placement, I emailed the teacher regularly, attended the meet and greet and parent night, and went to all the meetings, but Ben's needs still were not being met and I didn't know that for over a year until an ARD meeting the teacher didn't even attend when everything hit the fan.
Even after that, I consented to continue this same placement with another teacher. It became a three-hour PPCD class for my child combined with a full-day pre-school class for school district employees. I should have known right then that it would not be sufficient for my child. Why were the non-special needs children being given MORE time and education than Ben? It still does not make sense to me, and I advise avoiding such classrooms because Ben did not benefit from it and lost precious time and interventions. The teachers and aids were overrun with students and my special needs child who had just been diagnosed (both privately and by the district) had IEP's in place that could not be adequately addressed. I didn't know I could ask for another placement until I spoke with another employee of our district who had removed her Autistic child from a similar situation. They don't tell you what you can ask for, so you need to ask for everything. Don't be afraid or intimidated. If you are unhappy with your child's educational services or placement, ask questions and research until you are.
And pay close attention at those ARD's (or IEP's, as they are called in some places). Push for all of the therapy and interventions your child qualifies for and needs, and don't let them whittle down sessions or time. Read the plan before you sign it. Once, they mentioned that his speech therapy would be continued but did not say they wanted to cut it to twice a month; however, it was on the form the diagnostician filled out as she talked to me. They were displaying it on a screen on the wall, and I just happened to look up and notice that she was changing the amount right before my eyes. Had he met more than half of his speech goals? No, she replied, but they were confident he was "on his way." I stated that I would prefer to cut his speech therapy after he met goals and not before, and proceeded to lock eyes with her until she changed it back to weekly. Just because they seem pleasant and accommodating, it doesn't mean they are doing what is best for your child. Check up on everyone and everything.
Attitude adjustments. After Ben's diagnosis, part of my process of dealing with it was to learn and reflect. My mind has changed about many things, and, as I am a very opinionated person (just ask anyone), my opinions have developed, multiplied, and shifted as well. Just like with so many other things, I find I ride the fence on this one. I am NOT glad my child has Autism. I think he is a blessing, but I think it is NOT. I am far too realistic to spew a bunch of rainbows and glitter about Autism, but I also believe that it does not devalue him or make him any less capable or wonderful than any other child. I avoid sites and groups that glibly assert we should feel fortunate that our children were "blessed" with Autism because it makes them highly intelligent (though I don't believe children are intelligent because they have Autism) and unique. Gag me with a fork. This syndrome is a challenge, an obstacle to overcome; it makes our lives more difficult and it isolates my son from the rest of the world. It is not a blessing, and I wouldn't wish it on anyone.
I love my child more than anything with that to the ends of the Earth mommy love that we don't know exists until we become parents. But I hate Aspergers, even though it is a part of that same child I love so much. It's a difficult edge to dance along. I don't want to change him because I love him and think he is wonderful. But I wish he was not on the spectrum. I wish Autism did not exist. It's an emotional roller coaster that caught me by surprise.
Seek support. No matter how strong you are, this journey is easier with support. Fortunately, I have a very supportive family and Ben's dad is in his life. His dad takes him to school across town so that he doesn't have to ride the bus and have an additional transition in his day, and he takes him to private occupational therapy once a week while I am at work. We have also adjusted his parenting time so that he picks Ben up from school three times a week so that Ben is not in daycare as much.
My family has been immeasurably supportive emotionally, financially, and physically. My parents have helped with therapy and expenses, they keep him so that I get to have personal time on occasion, they pitch in when he is sick, and my extended family has been very sweet, understanding, and patient with Ben. And they all love him, no matter what.
Ben has an awesome occupational therapist and a fabulous PPCD teacher. We have a valuable parent in-home trainer who has greatly helped us, and I am surrounded by intelligent educational professionals who take the time to give me advice and point me in the right direction.
I am fortunate to have this support and I know it. Not everyone has that, and I know this as well. However, I don't know what I would do without the additional support of a group I am in on Face Book. I haven't met these women in person, but through this group, I know them all to be strong, intelligent women who have been and are where I am and understand the emotions, frustrations, challenges, fears, and joys of parenting a child on the spectrum. Despite the support system I have here, I am still the one in the trenches who lives with it 24/7 and who does the bulk of the worrying and the work. I am alone with the tantrums and sleepless nights. I am the solver of the problems, the maker of appointments, the finder of resources, and the asker of many questions until issues are resolved. Unless someone has been in these same trenches, he or she does not completely understand. It's just not possible.
If you are a parent or caretaker of a child with Autism, find people who have been in the trenches. Reach out in your community, online, to me, anywhere you can. I cannot fully explain the difference this group of ladies makes in my emotional health and ability to be a good parent and sane person. I can go to them to vent any frustration. They never undermine or dismiss an issue or problem, and they have a wide range of experiences with their own children to help guide me in the right directions. I can go there to celebrate any success, no matter how trivial it might seem to the parents of neuro-typical children and they always celebrate with me. It also gives me a place to be supportive and feel helpful, which is valuable in itself.
Autism is not just an issue for the child that has it or the family of that child. It affects everyone in the community, and with the new statistics that are out, every community will be touched by it. Be aware of people who are different but valuable, in their own world but a part of yours as well, and who may not speak but can be hurt by your words and exclusions. Embrace them, and teach your children to embrace them. It will mean more to them than you can imagine.
Sunday, February 19, 2012
Six Years
Dear Benjamin,
Tomorrow, you will turn six years old! SIX! Sometimes, I can't remember what life was like without you--it feels like you've always been my first thought and that you've always filled my heart. Other times, it seems impossible that it has already been six whole years since you officially entered the world and I fell completely in love with my tiny boy who spent his first 23 days in NICU. At four pounds eleven ounces, you really were a tiny baby. You would never know it now. You are tall, active, busy, and run all over and climb everything, and you have definitely overcome those physical challenges you had when you began your life.
This has been a big year for you. You are talking more and more and you say the funniest things. You love to tease people and make us all laugh. You are learning how to better negotiate your world and deal with changes and transitions. You have dealt with quite a few lately--new daycare, new routine, and new schedule with your daddy-- and you handled them all like a champ. I couldn't have asked for you to do a better job. Your fine motor skills are improving; you can do lots of things you couldn't do this time last year. And (drum roll, please) you are potty trained! That was a big project for you for quite a while, but you did it! And you are being such a big boy about it! Plus, PLUS, you got your first official haircut at a barbershop with clippers of all things! You lost your two bottom front teeth a couple of months ago and are working on learning how to ride your bike. We are also working on reading, and you know your letters and their sounds and are beginning to identify a few words here and there. You are not terribly interested in it as you would prefer to have the book read to you or to run around and play, but we are working on it. Your teacher, Mrs. S, thinks you have a photographic memory and that you are very smart. We agree. The problem is you don't always feel like showing us what you know, but we are working on that, too.
You still love music, musical instruments, books, and animals, but your interests have broadened some this year. You enjoy LEGOS, firetrucks, pirates, and police cars. You chose Cars 2 as your party theme this year, and Tow Mater is your favorite. We had a lovely moment this summer while waiting for your therapy appointment and you decided to quote what is probably the most inappropriate line from the original Cars movie. You loudly exclaimed, "Help! I'm in hillbilly hell!" That wasn't a good time, but it was funny in retrospect.
We still have some challenges. Your fine motor skills, though much improved, are still behind. You still get overwhelmed sometimes and just need some space or to be held in a dark, quiet place, but those episodes are getting fewer and farther between. You need lots of help with things, but we are making sure you get the help you need and I know you are going to meet your goals.
And then there was the blue Play-Doh we had to have surgically removed from your ear. In the hospital. After they put you under. That was not a good time either.
You definitely do things in your own time. We struggle and struggle with something for what seems like forever, but eventually you just decide you are going to do it and you do it well. That's okay, though. We'll take as much time as you need. You have a sweet little soul--affectionate, helpful, loving, funny--and you are my greatest joy. I am so thankful I have had you in my life to love and learn from for the past six years. I can't wait to see what this next one will bring.
I love you, Benjamin Bear. Thank you for being my precious boy.
Love always from your biggest fan,
Mommy
Tomorrow, you will turn six years old! SIX! Sometimes, I can't remember what life was like without you--it feels like you've always been my first thought and that you've always filled my heart. Other times, it seems impossible that it has already been six whole years since you officially entered the world and I fell completely in love with my tiny boy who spent his first 23 days in NICU. At four pounds eleven ounces, you really were a tiny baby. You would never know it now. You are tall, active, busy, and run all over and climb everything, and you have definitely overcome those physical challenges you had when you began your life.
This has been a big year for you. You are talking more and more and you say the funniest things. You love to tease people and make us all laugh. You are learning how to better negotiate your world and deal with changes and transitions. You have dealt with quite a few lately--new daycare, new routine, and new schedule with your daddy-- and you handled them all like a champ. I couldn't have asked for you to do a better job. Your fine motor skills are improving; you can do lots of things you couldn't do this time last year. And (drum roll, please) you are potty trained! That was a big project for you for quite a while, but you did it! And you are being such a big boy about it! Plus, PLUS, you got your first official haircut at a barbershop with clippers of all things! You lost your two bottom front teeth a couple of months ago and are working on learning how to ride your bike. We are also working on reading, and you know your letters and their sounds and are beginning to identify a few words here and there. You are not terribly interested in it as you would prefer to have the book read to you or to run around and play, but we are working on it. Your teacher, Mrs. S, thinks you have a photographic memory and that you are very smart. We agree. The problem is you don't always feel like showing us what you know, but we are working on that, too.
You still love music, musical instruments, books, and animals, but your interests have broadened some this year. You enjoy LEGOS, firetrucks, pirates, and police cars. You chose Cars 2 as your party theme this year, and Tow Mater is your favorite. We had a lovely moment this summer while waiting for your therapy appointment and you decided to quote what is probably the most inappropriate line from the original Cars movie. You loudly exclaimed, "Help! I'm in hillbilly hell!" That wasn't a good time, but it was funny in retrospect.
We still have some challenges. Your fine motor skills, though much improved, are still behind. You still get overwhelmed sometimes and just need some space or to be held in a dark, quiet place, but those episodes are getting fewer and farther between. You need lots of help with things, but we are making sure you get the help you need and I know you are going to meet your goals.
And then there was the blue Play-Doh we had to have surgically removed from your ear. In the hospital. After they put you under. That was not a good time either.
You definitely do things in your own time. We struggle and struggle with something for what seems like forever, but eventually you just decide you are going to do it and you do it well. That's okay, though. We'll take as much time as you need. You have a sweet little soul--affectionate, helpful, loving, funny--and you are my greatest joy. I am so thankful I have had you in my life to love and learn from for the past six years. I can't wait to see what this next one will bring.
I love you, Benjamin Bear. Thank you for being my precious boy.
Love always from your biggest fan,
Mommy
Saturday, February 11, 2012
Haircut Success!
Many posts ago, I mentioned that Ben has always been terrified of haircuts. He is horribly scared of them, and due to his sensory issues, they overwhelm him. Since he got his first haircut at about the age of two, we have struggled with this. I let him go as long as possible in between cuts, but his hair is very straight and when it was long enough to hang in his eyes, I would call my sweet friend, Kim, who has an incredible amount of patience and serenity, and I would hold him down while she cut his hair and he screamed bloody murder.
It was awful every single time. She always assured me that, eventually, he would outgrow this and handle it better, but I was beginning to think she was wrong and that he was just going to have hair down to his toes if she ever quit cutting it for us. We tried a social story, a wonderful book called "Bippity Bop Barbershop" by Natasha Anastasia Tarpley, and bribery. NOTHING worked.
This morning, however, a small miracle occurred. My dad and brother (Poppy and Uncle Nathan) have been talking up their barber and going to the barbershop with them like a big boy for a few weeks now. The thought was to take him and let him watch them get their haircut and then see if he would get one. I put the haircut on his picture schedule, packed "Bippity Bop Barbershop" and the Ipad for distraction, and they went on their way.
I was pretty sure it would be a big disaster but was hopeful at the same time, and GUESS WHAT? Ben got a haircut! He wore the cape, sat in the chair, held still, and let the barber even use clippers, which in itself is HUGE! He did not scream and no one had to hold him down!
I am so proud of him and relieved, I can't even explain it. One of my biggest jobs is to help him navigate the world, which is very different from helping a kid who is not on the spectrum navigate the world. Unless you have done it, you don't understand. All those things other parents take for granted are issues for us. That's just how it is. When he has a success like this, though, there is light at the end of that tunnel. There is hope that eventually he will be able to handle other things better too, and that he will grow up and be able to take care of himself.
The doctors tell parents of children with Asperger's that we are the lucky ones because our children will "probably" grow up to go to college, get married, and have a job like everybody else but will just need extra help along the way. Sometimes, it's impossible to see that. When your child can't function or handle a normal part of everyday life like a haircut, you don't believe them or agree with them and you worry like you would not believe. This little event of my almost six-year-old boy getting a haircut at the barbershop means so much more than it does for other kids his age. So much more.
Before:
And that does not even show how long it was. I tried to get a "before" pic with it in a ponytail on top of his head, but he wouldn't go for that.
After:
It was awful every single time. She always assured me that, eventually, he would outgrow this and handle it better, but I was beginning to think she was wrong and that he was just going to have hair down to his toes if she ever quit cutting it for us. We tried a social story, a wonderful book called "Bippity Bop Barbershop" by Natasha Anastasia Tarpley, and bribery. NOTHING worked.
This morning, however, a small miracle occurred. My dad and brother (Poppy and Uncle Nathan) have been talking up their barber and going to the barbershop with them like a big boy for a few weeks now. The thought was to take him and let him watch them get their haircut and then see if he would get one. I put the haircut on his picture schedule, packed "Bippity Bop Barbershop" and the Ipad for distraction, and they went on their way.
I was pretty sure it would be a big disaster but was hopeful at the same time, and GUESS WHAT? Ben got a haircut! He wore the cape, sat in the chair, held still, and let the barber even use clippers, which in itself is HUGE! He did not scream and no one had to hold him down!
I am so proud of him and relieved, I can't even explain it. One of my biggest jobs is to help him navigate the world, which is very different from helping a kid who is not on the spectrum navigate the world. Unless you have done it, you don't understand. All those things other parents take for granted are issues for us. That's just how it is. When he has a success like this, though, there is light at the end of that tunnel. There is hope that eventually he will be able to handle other things better too, and that he will grow up and be able to take care of himself.
The doctors tell parents of children with Asperger's that we are the lucky ones because our children will "probably" grow up to go to college, get married, and have a job like everybody else but will just need extra help along the way. Sometimes, it's impossible to see that. When your child can't function or handle a normal part of everyday life like a haircut, you don't believe them or agree with them and you worry like you would not believe. This little event of my almost six-year-old boy getting a haircut at the barbershop means so much more than it does for other kids his age. So much more.
Before:
And that does not even show how long it was. I tried to get a "before" pic with it in a ponytail on top of his head, but he wouldn't go for that.
After:
Sunday, January 15, 2012
Going With the Flow
If you know kids on the spectrum, you know they don't do this very well. Ben certainly does not, for the most part. He resists "the flow", rebels against it, rages at it, and melts down any time "the flow" doesn't go the way he thinks it should or envisioned it would. Transitions are hard, and changes and new routines are harder. Ben is a great kid, but flexible and well-adjusted are not high on his list of many attributes.
Last week brought many changes and new routines for Ben. We began school again after a long Christmas break of sleeping late, playing, fun outings and a whole lot of nothin' while we wore pajamas all day. His school and therapy routines aren't different but they did resume, and he has really struggled with that in the past. By struggled, I mean screamed, cried, threw himself on the floor, refused to get dressed, kicked, hit himself, hit others and kicked his shoes off 20 times before we even left the house. And it wasn't pretty at school or daycare, either.
In addition to returning to school, Ben's dad and I created a new custody/visitation schedule which we also began this last week. Ben lives with me full-time, though his dad and I have joint custody. The reasons behind that are complicated and personal, but we try to keep a schedule that gives him as much meaningful time with his dad as possible. As our lives changed and the distance between us and our relationship grew, so did some of the tension between us. We have to be able to get along for Ben, but that was becoming increasingly more difficult. We worked together to change Ben's schedule so that they have the same amount of time together but a lot of it is when I am at work, so that the time they share is more meaningful and less tense, among other reasons. The last time this changed, Ben had a very difficult time with it. He didn't understand why he couldn't see Daddy when he was used to, or whenever he wanted, for that matter, and it was very, very hard, for lack of a better word. It was wrenching to watch him and I felt helpless as he was really too little to explain it to adequately. These new changes are positive ones, in my opinion, but still potentially difficult for Ben.
On top of all that, he began a new daycare. Yes, all at the same time, in the same week. It's a wonderful new daycare: sparkling clean, designed to accommodate children with special needs as well as those without, roomy, calm, includes sensory integration tools in each classroom, has teachers with BS's in early childhood ed, and charges a part-time rate if your child is there for less than four hours a day (which was one of the problems with the old one--$95 for 6-7 hours of care a week for an almost 6-year-old is beyond ridiculous). And the new daycare picks him up from school so that he doesn't have to ride the school bus for a longer amount of time. It's perfect. But it's N-E-W. New means scary. New means meltdown waiting to happen.
Ben and I visited it together the week before. He was nervous, even though he knew he wasn't staying and would be leaving with me, and swayed from foot to foot while gripping my hand for a few minutes, but he liked it. He said hello to his new teachers and new class, shook the teacher's hand, and expressed some excitement over the awesome toys in the gym. His teacher explained a few things to him, and the receptionist explained who would pick him up and showed him the T-shirt the lady would be wearing. They allowed me to take pics of the van and sign in front of the building for his picture schedule, and he left calmly and seemed only slightly anxious about it.
At home, I adjusted the picture schedule and the Mommy/Daddy calendar we keep that shows who he will see each morning and each evening, we talked about the changes, read books about school and Mommy and Daddy leaving and coming back, and everything else I could think of to prepare him for it all. I have to tell you, I was scared. I was terrified he would melt down and be miserable, particularly at a new daycare where he wouldn't know anyone. Every time we went back to daycare at his former center, he melted down but they had known him and cared for him since he was an infant. They were able to figure out how to help him simply because they knew him. The new center is better equipped and has better educated staff, but they didn't know Benjamin, and that makes a huge difference with a kid. I was afraid he would be miserable and feel alone and scared, and I wasn't sure what he might do under such stress. By Tuesday (his first day at the new daycare center), I was a wreck.
To my great relief and surprise, it went amazingly well. His teacher reported all good days at school, the new daycare said he did well in the van and in his classroom, and he actually said he liked it (which is a big deal in itself). He also has yet to freak out over the change in his schedule with his daddy. We had one melt-down Friday morning over a shirt--he would pick one out, throw a fit about wearing it, choose another, throw a fit, etc.--but after he left the house, he was fine. One freak-out at the end of a week full of stressful changes is definitely improvement, and I am so excited about it I can't even begin to tell you.
Helping Ben negotiate the ups and downs of life is a long, hard road sometimes. Changes have to happen and that's true for everyone's life, but these things are harder on kids like Ben than most other people. He is growing up and dealing with things a bit better, and he certainly did a good job of "going with the flow" this week. I'm super proud of him and very hopeful that he will continue to adapt and adjust a little more easily.
Last week brought many changes and new routines for Ben. We began school again after a long Christmas break of sleeping late, playing, fun outings and a whole lot of nothin' while we wore pajamas all day. His school and therapy routines aren't different but they did resume, and he has really struggled with that in the past. By struggled, I mean screamed, cried, threw himself on the floor, refused to get dressed, kicked, hit himself, hit others and kicked his shoes off 20 times before we even left the house. And it wasn't pretty at school or daycare, either.
In addition to returning to school, Ben's dad and I created a new custody/visitation schedule which we also began this last week. Ben lives with me full-time, though his dad and I have joint custody. The reasons behind that are complicated and personal, but we try to keep a schedule that gives him as much meaningful time with his dad as possible. As our lives changed and the distance between us and our relationship grew, so did some of the tension between us. We have to be able to get along for Ben, but that was becoming increasingly more difficult. We worked together to change Ben's schedule so that they have the same amount of time together but a lot of it is when I am at work, so that the time they share is more meaningful and less tense, among other reasons. The last time this changed, Ben had a very difficult time with it. He didn't understand why he couldn't see Daddy when he was used to, or whenever he wanted, for that matter, and it was very, very hard, for lack of a better word. It was wrenching to watch him and I felt helpless as he was really too little to explain it to adequately. These new changes are positive ones, in my opinion, but still potentially difficult for Ben.
On top of all that, he began a new daycare. Yes, all at the same time, in the same week. It's a wonderful new daycare: sparkling clean, designed to accommodate children with special needs as well as those without, roomy, calm, includes sensory integration tools in each classroom, has teachers with BS's in early childhood ed, and charges a part-time rate if your child is there for less than four hours a day (which was one of the problems with the old one--$95 for 6-7 hours of care a week for an almost 6-year-old is beyond ridiculous). And the new daycare picks him up from school so that he doesn't have to ride the school bus for a longer amount of time. It's perfect. But it's N-E-W. New means scary. New means meltdown waiting to happen.
Ben and I visited it together the week before. He was nervous, even though he knew he wasn't staying and would be leaving with me, and swayed from foot to foot while gripping my hand for a few minutes, but he liked it. He said hello to his new teachers and new class, shook the teacher's hand, and expressed some excitement over the awesome toys in the gym. His teacher explained a few things to him, and the receptionist explained who would pick him up and showed him the T-shirt the lady would be wearing. They allowed me to take pics of the van and sign in front of the building for his picture schedule, and he left calmly and seemed only slightly anxious about it.
At home, I adjusted the picture schedule and the Mommy/Daddy calendar we keep that shows who he will see each morning and each evening, we talked about the changes, read books about school and Mommy and Daddy leaving and coming back, and everything else I could think of to prepare him for it all. I have to tell you, I was scared. I was terrified he would melt down and be miserable, particularly at a new daycare where he wouldn't know anyone. Every time we went back to daycare at his former center, he melted down but they had known him and cared for him since he was an infant. They were able to figure out how to help him simply because they knew him. The new center is better equipped and has better educated staff, but they didn't know Benjamin, and that makes a huge difference with a kid. I was afraid he would be miserable and feel alone and scared, and I wasn't sure what he might do under such stress. By Tuesday (his first day at the new daycare center), I was a wreck.
To my great relief and surprise, it went amazingly well. His teacher reported all good days at school, the new daycare said he did well in the van and in his classroom, and he actually said he liked it (which is a big deal in itself). He also has yet to freak out over the change in his schedule with his daddy. We had one melt-down Friday morning over a shirt--he would pick one out, throw a fit about wearing it, choose another, throw a fit, etc.--but after he left the house, he was fine. One freak-out at the end of a week full of stressful changes is definitely improvement, and I am so excited about it I can't even begin to tell you.
Helping Ben negotiate the ups and downs of life is a long, hard road sometimes. Changes have to happen and that's true for everyone's life, but these things are harder on kids like Ben than most other people. He is growing up and dealing with things a bit better, and he certainly did a good job of "going with the flow" this week. I'm super proud of him and very hopeful that he will continue to adapt and adjust a little more easily.
Subscribe to:
Posts (Atom)