Or Maybe Jupiter
April is Autism Awareness month, and I have a vested interest in researching this disorder. Meet my first son Benjamin.
No parent ever wants to hear that something is wrong with their child; that their offspring is not completely perfect.
Realizing the magnitude of being entrusted to care for, nurture, raise and eventually let go of a new life is both mind-boggling and awe-inspiring as well as terrifying. Before my first was born, I could barely be considered responsible to care for an aquarium, and rightly so: I am an idiot.
Having had no experience with babies, I had no idea that mine was abnormal. He hated human touch, he preferred to watch his mobile spin around to looking at faces. His first word was not ‘œMama’ or ‘œDada’ or even ‘œBaba:’ it was ‘œtock-tock.’ His phrase for ‘œtick-tock’ referring to the grandfather clock in the hallway which he adored. I’d be lying if I claimed that I wasn’t devastated by his total lack of interest in me and his distain for my touch, but I assumed that this was just the way he was.
Different strokes for different folks and all that happy horseshit.
Shortly after his first birthday, he was introduced to the planets through a Baby Einstein video. Before he could recognize emotions, he knew 4 of the moons of Jupiter and could identify them from different angles. *I* couldn’t even do that.
Rather than wanting to read Goodnight Moon, I took him to Borders and he picked out an encyclopedia of the solar system intended for adults, which he memorized cover to cover. He could spend hours at the Planetarium but screamed bloody murder at the zoo. I’d come home from class to several different ‘œsolar systems’ he’d created out of balls, each true to form. His depth of knowledge was amazing and freakish and I have no real way to illustrate that to you here.
This was all before his second birthday.
I had realized, of course, that he wasn’t speaking as much as What To Expect During The First Year said that he should, but considering the authors militant stand about their stupid pregnancy diet in their stupid pregnancy book, I wasn’t too worried. I just assumed that he was developing at a different rate than others his age. I mean, what 17-month old can tell you what Pluto’s moon is? (mine could). I had also figured that no one had really encouraged his speaking abilities, being the only child/grandchild, we all spoke for him.
At his 2 year check-up, his regular pediatrician was out and his partner told me in no uncertain terms that not only could he not understand him, but that he would be writing a referral out for an evaluation from Early Interventions. I left that appointment not only upset with the manner in which the doctor had spoken to me (‘How dare he talk to me like that?’) but by the fact that I hadn’t even thought anything was wrong.
Several times, different evaluators came out to our house to observe him and speak with me about his behaviors. Many of the questions provoked light bulbs in my head, a ‘œso THAT’S why he does _____! (only eats 3 things, becomes so overwhelmed by touch that he screams inconsolably, lines up his toys by color on the stairs, has an insane fascination with spinning things, knows WAAAAAYYY too much about the solar system, flaps his arms whenever he’s excited”) which really only made me feel worse about the things I had never noticed, or had noticed but considered quirks.
I drew the line at receiving a formal medical diagnosis however, because as a nurse and the daughter of a mentally ill mother, I am completely aware how these things follow you for the rest of your life until you can only define yourself by them. Does that make sense to you?
Let me give you an example: I (myself here) am dyslexic, have Crohn’s disease, and have a latex/iodine/shellfish allergy. But does that make me who I am? Not one bit, but not only do I catch myself excusing away things based on this, it has become a teeny tiny but integral part of my self image. And I do not have any behavioral problems to excuse away (i.e. ‘œI’ll never be able to sit still because I have ADD, therefore I won’t even try.’)
Without a totally formal diagnosis, he was explained to be on the autistic spectrum and speech and occupational therapies began immediately. For almost two years, he recieved both therapies and began to make strides toward more normal behavior. He began to speak more frequently and clearly in addition to being able to deal with more and more textures, consistencies, and tastes. His more interesting quirks remain to this day, thankfully, as they are part of what makes him who he is.
My soon-to-be husband and I enrolled him into private school when he turned three to enrich his social skills, as he had no children his own age to play with at home. I’m not sure that these social skills will ever be what is considered totally normal, but they have improved by leaps and bounds, possibly to the point that an innocent bystander would not realize how much he had once struggled to do something as simple as recognize basic emotions.
I have still struggled through numerous thoughtless comments from both parents and non-parents alike (‘why won’t he eat anything but junk food?’) who have somehow gotten it in their head that his problems are little more than an issue of bad parenting. I have suffered through years of guilt and regret (had *I* done something to cause this?) I have spent cold meal after cold meal coaxing him to eat something that looks different or *is* different.
I continue to worry about what his life will be like as he grows older and begins to interact more with the general population: will they be gentle and understanding of his uniqueness or will they tease and mock him mercilessly?
Have we done enough to prepare him for the world?
I have spent hours upon hours reassuring him that completing a ritual out of order was just fine, and comforting him from afar while wanting nothing more than to sweep him in my arms and kiss his tears away.
I have had to accept that my child is not perfect in any text book sense.
Is this the worst thing that could happen to a mother? Certainly not; he’s happy, he’s healthy, and above all else he is loved unconditionally. Having seen babies born without brains and hearing them cry (possibly the worst sound in the world), I am aware that I got off pretty easy here. But competing in the Pain Olympics isn’t why I wrote this post.
As you all know, I am not one to use this blog as a political forum, nor am I likely to spend time talking about my feelings here, or elsewhere. But this is an issue incredibly close to my heart: he’s part of my heart, he’s my son.
We all have hopes for our children.
As for me, I just hope that he knows how much I have loved him.
Oh my god– he is adorable! I have not seen a recent picture of him recently!
You made me tear up at the end – “But this is an issue incredibly close to my heart: he’s part of my heart, he’s my son.”
Beautiful!
Oh Aunt Becky – I hear you totally! Nephew #1 is a high functioning autustic child, not quite aspergers. I have a feeling that Nephew #1 and Ben would get along famously. Nephew #1 was (and still is to a point) obesssed with Thomas the Tank Engine, much like Ben’s solar system quirk. Can you see them using Thomas to travel to Pluto’s moons?
And you know what – in his own way, even if he struggles with emotions – he KNOWS how much that you love him. I truly believe that. Even though they have a hard time expressing their emotions, they KNOW.
It has only been within the past year since my son was born that I even remotely began to realize about Autism and that 1 in 150 children born in the US is diagnosed. I simply had no idea….. however it is stories like yours that make me pay more attention, read all I can, and pay close attention to how Patrick reacts with the world around him.
thank you for sharing your story Becky…
The great thing is that Autism is finally getting the attention that it needs. With new findings popping up and media focus, our society is becomming more sensitive to Autism.
I’ve worked with children who are autistic and one thing they all have in common is that they all have parents who are very caring and dedicated. Thank God for that!
One of the most powerful posts I have read. This is why I blog . . . to meet people like you. What an amazing mom you have been–you never thought, “What’s wrong with him!” YOU LOVED HIM UNCONDITIONALLY . . . he IS your son.
“I am completely aware how these things follow you for the rest of your life until you can only define yourself by them.” So, so true. You are so aware, self-aware . . . This is why you are the very best mom for him.
This is the reason I DO NOT judge. Being a little older first time mom has made me realize that we are ALL trying to do the best we can (sure there are exceptions, but I tend to believe they are few and far between). So, if I see a child munching away on junk food–I think . . . look how much that boy loves food! A kid after my own heart!
“I have spent hours upon hours reassuring him that completing a ritual out of order was just fine, and comforting him from afar while wanting nothing more than to sweep him in my arms and kiss his tears away.”
Have you done enough? Yes, momma. You have. And clearly, you won’t ever stop 🙂
Thank you so much for sharing your story with us! Sorry to be a mush, this is just a touchy topic for me as well . . .
Oh.
Oh, Becky.
Becky, have you seen that book by Jenny McCarthy? She and her doctor appearantly were able to get some remarkable progress out her son by treating him for food allergies.
Sorry to be an ASSHAT.
I know I feel all the more honored to not just meet you, but your beautiful son, Ben.
I think if anybody spends enough time getting evaluated by doctors they will never be ‘text book perfect.’ It simply doesn’t exist.
Any little boy that can soak up knowledge, like your little Benjamin can, is a very bright little boy, no matter how the doctors diagnose him.
A loving and understanding home is what will get him on his way to a fulfilling life, and that sounds like exactly what he’s got.
Keep up the good work!
What an awesome post! He is a gorgeous child, and I know how you feel about a kid not being defined by their diagnosis. My oldest has petit mal epilepsy, and I was SCARED to death when the dr. said it may be epilepsy, because of the label and the preconceived notions that some people have (grand mal seizures, flopping around on the floor, etc) and that people would be afraid to even have him at their house or something because of it. I was also worried about having him get an education plan to give him a little extra time on work and testing, because I was afraid of what teachers would label him as. It sucks, but it’s the truth. I work one on one with a five year old who is autistic, and before I took the job, the rumors were flying at our school about this little guy, how he bites, hits, kicks, runs away, etc. etc. etc. I took the job anyway, despite being a little apprehensive, and he does NONE of it. He’s bonded to me, and we get along great, and I love my job. I hate how he has been misunderstood by people, and how he has a false reputation that precedes him. We have a boy with Asperger’s in our class too, and he’s the greatest kid. If people would just take the time to get to know these kids, they would have their hearts stolen.
What a beautiful post.
My brother who is 30, has AS. For years, I never understood why he seemed emotionally disconnected, why he prefered to stay in his room when there were guests, why he could talk for hours about something that interested him, but showed little interest when I spoke.
Unfortunatly AS wasnt diagnosed years ago. He leads a pretty normal life with friends, and does date. He holds down a well paying job. He does still ive with my parents, but he says its out of convenience.
I noe feel bad for all the years that I judged him and called him selfish. Who was I to know what he had.
You are a strong woman and a strong mother.
Thank you for sharing your story.
A beautiful post Becky. I agree with the others that Ben KNOWS how much you love him even if he doesn’t express it. I too bailed out before receiving a “formal” diagnosis for Gracie. She was referred to early intervention shortly after coming home from the NICU because she had a lot of sensory issues (first we could not bathe her because she would cry to the point of hyperventilating and/or turning blue when immersed in water because she got so anxious that she would actually stop breathing, then when we started with foods she wouldn’t eat anything that had a strange texture (we still struggle with that one) and then she would scream if socks were put on her feet, etc.) our EI therapist suggested getting a formal diagnosis of Sensory Processing Disorder (also on the autism spectrum), but instead I asked for help in teaching her how to overcome some of these sensory issues, and we’ve been focusing more on that than a formal diagnosis.
Like you said… she’s my daughter and nothing will ever change that. No diagnosis will ever change my love for my daughter, she is a part of me and my love for her is unconditional as is yours for Ben.
girl, you know that boy love you!!
even through you words i can tell that you are a wonderful mother! don’t doubt it, never doubt it.
Ben is a lucky boy to have such a wonderful and amazingly talented mother.
Ahhh Becs, he is adorable. You are such a wonderful mom.
Gawwwd, that was really strong. I didn’t know. How did I not know that? You are a lovely mother as well as a hilarious human being. And I totally know what you mean…at one point, one of the doctors examining Sadie said not to worry about it being something really serious like retardation that would make her damaged goods. Can you believe that? He didn’t mean any harm but I leapt to my feet and said, “even if she was retarded, she certainly wouldn’t be damaged goods, she’d be my child!” We mama bears have to be strong for our little baby bears always! You seriously inspire me.
Wow, Becky…I am so proud of you advocating for your son. I have a nephew who is autistic also. His parents truly do nothing to advocate for him. My ex-husband and ex-inlaws do though. For which I am incredibly grateful.
I donate to all things Autism and will now be donating in honor of two Benjamin’s! As, Ben is my nephew’s name also!
Good for you for posting about beautiful Ben! The more people talk about it, the less isolated these children will be. I have a dear friend who has two autistic sons, one high functioning and the other at the opposite end, fighting mightily to beat down the giant and I might add, having many great successes too. The high functioning son(JM) has been in school with my son since kinder. Many of the kids know that he sometimes will respond differently to a situation or have noticed as they have aged(they are 5th grade now) that his speech is slightly different etc… and they just accept it for a part of who this child is. For the few kids, mostly lower graders who are unaware, who make the unfortunate decision to ridicule or tease, they are immediately set straight by what we have come to call the JM Posse. They will not tolerate anyone messing with their boy. Ever. I am a proud mom to one of the ‘posse leaders’ and am amazed by the kids ability to be compassionate and supportive of JM. They are in awe of his unbelievable ability to recite all of the state capitols, and other fascinating facts he stores in his unique brain and they never are afraid to ask for his help with homework because they know he ALWAYS has the right answer.
I tell you this because I hope when it is time for Ben to hit the big kid playground you will find some moms who will help create a posse for Ben. The kids who get to know him when he’s young and will,because most kids do, accept him for who he is and then as they get older and can understand his unique ways, they will make sure that others do to and that no harm ever goes unanswered, should it come his way.
Sounds to me as though you are already well on your way to doing this for him. Everyone knows the best posse anyone can have is Aunt Becky ready to throw some smack down, nevermind when Aunt Becky really is yo momma!!!
Becky, heartbreaking. And heartwarming. I believe he does know, because someone lovely is buying him books and fixing what he wants to eat and simply taking the time to listen to him. He does know.
I don’t do pain Olympics either. I’ve learned it’s really all relative. And this? Is tough. You’re one helluva mommy, Becky.
He knows, Becky, he knows.
There is a HUGE spectrum of functioning with autistic behavior. Yep, he sounds autistic, but high functioning. I have worked with so many who do not talk at all. At one of the psych hospitals I worked at, our rules including honoring the picky food choices of autistic clients.
We’ve known for years that mothers do NOT cause autism (screw you, Dr, Bettleheim!). He is as he is and he needs someone to accept and support him as he is.
My nephew is diagnosed as autistic spectrum (Asperger’s Disorder) … I suspected as such when we took him and his sister to the aquarium – she stared at the fish while he stared at the buttons you could push to hear sound bites. When a volunteer showed us a shark egg by shining a flashlight through to show the fetusm he asked questions only about the flashlight.
You can force these kids to act “normal.” Just take them as they are and make the best of their fabulous quirky skills when they are lucky enough to have them.
I “get” so much of this . ..
And feel the same way, although our son’s have different disabilities.
Especially, the part about not being defined by their disability . . ..
There is so much more to them than that . . .
Great post!
What a wonderful post. Benjamin (and Alex too) is the luckiest boy ever to have you as a mother and advocate. This post tells so much about the woman and mother you are, as well as shining a light on your fabulous son. Thank you for sharing with us.
Man, you are a tough chick. Even before conception, we’re paranoid about autism these days and try to do all kinds of things to prevent it. I have a one year old boy and must admit i get all freaked out by it all. Who knows, ya know? You are a totally amazing person.
I LOVE YOU. You are such an awesome mom. “…he’s happy, he’s healthy, and above all else he is loved unconditionally.” If only every parent felt that way, the world would be a better place!
Oh oh oh. And he’s a cutie pie. Looks a lot like you, I dare say!
There’s a place for everyone in this world, I think, Becky. You should see the Aspy kids in the school library playing chess together. A few weeks a new kid came to the school and our boys came over to the desk and said ‘this is C… he’s one of us.”
It was excepionally cute.
I two have a child that they wanted to label,
& I to did not let them he had the same farmilia
problem that your son has. Anyway to the point
I did the same thing you are doing put him in theapy
seesions alot for years & years, & quess what they did pay off. He is now 27 years old has a 3 year old baby girl that he just thinks the world of & it it so amazing to me & my husband to see him as a dad. Yes he still has his qerks . But he has come a long way & so will your son
so keep up the good work as it will pay off.
Why is this post categorized as “Suck at Life”. It should be: “I’m an awesome Mamma!” Seriously, he is so lucky to have you as a mother. AND he is an awesome kid. Seriously.
I found you through Chris (Wat da Wat).
I will go back to read more later – love your writing – but just wanted to say that I agree with Pauline – this shouldn’t be under “I suck at life” but rather under “I am a caring, devoted mother and my son is lucky to have me”.
Very nice to “meet” you.
Yeah, he knows. You’re absolutely right not to get the formal diagnosis. Once they’re labeled…..that’s it..the teachers, administration..they make up their mind to treat the kid one way..and no other. You’re a great mom..you’re sick and twisted..but you’re a great mom! : )
That’s a wonderful post. You sound like such a good mom, I’m in awe. That is such a cute photo of Ben, I don’t think I’ve ever seen one.
What a gorgeous little boy! I have a huge respect for parents of autistic children as well as autistic people themselves. I think they are fascinating. I have no doubt that there are many challenges in dealing with such unique brain chemistry, but the things that make people different are the things that also make people interesting.
One of my best friends has two autistic children and she home-schools and is constantly trying different teaching methods, as well as seeking the advice of counselors and doctors. Having children with such challenges is difficult, but she wouldn’t trade it for the world and I can’t blame her. I am sure you feel the same way about your son. His gifts with memorization and visual learning sound amazing! It’s a blessing to have people like this in the world.
Thanks you.
Beautiful boy, beautiful mother, beautiful post.
That was a great post. I empathize with your concerns for his later life. I’m right there with you. And I know what it’s like to have people around you judge your parenting based on behaviors they don’t understand. Shit, I’ve lost friends (who in hindsight were never really friends) because they did not want their kids around mine because they might pick up those behaviors, or obviously, I was teaching them to him.
Well done.
I don’t think Ben could have gotten a better mom, or a mom who would show him just how much she loves him. He is lucky.
He is a beautiful boy.
That’s quite an amazing journey you’ve been on.
I think that having a mom that provides you with a soft place to fall at the end of the day during these early years can make a whole lot of difference.
I don’t know much about how the brain works, but I do know that it has to be a little bit scary to understand so much about the universe so young.
Becky–
This was just…I don’t even know what to say. I wish all kids had a mom like you.
Aunt Becky!! He will be just FINE! He has YOU what more could an adorable little boy need! HUGS!!!
Becky, I didn’t get to post before. You are one hell of a mother, and Ben is perfect. We expect things to be “normal” with our children and to find out that something may be differrent about them, it’s mind blowing. But you love him no matter what, and that is the most important thing. To him, to you. He’s your heart and he’s beautiful. The issues that you have to deal with may be a pain in the arse at times, but I also bet you appreciate so many other things that other parents never think about or take the time to think about. And it’s those moments of cherishing the little, unexpected things that will engrave deeply in the heart.
Much love.
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He knows Becky…
The labeling phenomena seriously worries me. Rachel says she wants Naudia to get tested for everything this year, and I’m trying like hell to talk her out of it. Unless there’s a serious problem and help is available, I’m against it. Ben’s lucky he’s with a Mom who doesn’t want to label him. It’s too easy to stick on a label and right it off. Life’s hard enough without putting tags on everyone.
I’ve said it before and I’ll say it again. You’re amazing and so is your boy Ben. I wish I knew the moons of Jupiter too!