The Diagnosis Is In
I think I’ll always remember this day. I’ll remember getting up, feeding Joey peanut butter toast and Nathan a toaster waffle, calling my nephew Tommy to wish him a happy 14th birthday, looking around Burlington Coat Factory and Staples for a Star Wars backpack, splitting an amazing asiago cheese bagel with Nathan for lunch, and going to Maine Medical Pediatric Partners on Congress St. in Portland to get the test results and find out that Nathan is autistic.
If you know us, are you shocked? Or are you going, “oh…that makes sense.” Because I’ve got both going on right now. When they first brought up the possibility, I was like, “no. No way. Autism is marked by no eye contact, being spaced out, maybe not even talking at all.” Even Asperber’s Syndrome seemed a stretch. Nathan’s quirky, but autism spectrum?
Well, apparently he has what they call PDD-NOS, (Pervasive Developmental Disorder – Not Otherwise Specified). I’ve got some alternative titles floating through my head:
*DLAS – WTDKWEICB – Doctors Love Autism Spectrum – When they Don’t Know What Else it Could Be
*ASITNADHD - EKHAL – Autism Is The New ADHD – Every Kid Has a Little
*PDD-WDICIWCATAN – Pervasive Development Disorder – What Do I Care? I Wouldn’t Change a Thing About Nathan
But, of course, I’m not all Zen wisdom. I’m freaking out a little. What does this mean for the future? Nathan always asks if he can live with me forever and never get married. Did Norman Bates have PDD-NOS? Will he be able to thrive socially if I’m not there to guide him? Will he stop developing at some point? Backtrack? He’s already got five light sabers and asks everyone he meets which episode is their favorite. Will he be that geeky guy that lives with his parents when he’s 40, and is only able to relate to people and things in terms of Star Wars? He even wants me to have a baby girl and name her Padme. Shit!
I guess I had this misconception that once the kid came out of the belly and he had all ten fingers and toes, and could see and hear and was crawling and talking and walking at times deemed appropriate by the American Pediatric Society, then we could take a deep breath and let out a nice sigh of relief and say, “cool, we’ve got ourselves and average, ordinary little boy here. Let’s have some fun raising him.”
Well, today, I get to say, “okay, we’ve got ourselves some extra challenges ahead, but at least we finally have a direction to go down, to figure out what we can do to make the bumps along the way a little less bumpy.”
After all, the opposite of ordinary is extraordinary, right?
This kid amazes me and, yes, makes me tear my hair out from time to time, but boy does he make me laugh, and think and learn about myself.
So this is what it’s like to have a kid on the high functioning end of the autism spectrum? Okay, we can do this.
This isn’t a potentially horrific path, but it is a bit of a fork in the road that I didn’t expect. I have a lot of reading to do, and a lot of processing, but I feel like sharing this journey, as we embark upon Nathan starting kindergarten with his new diagnosis, might be the most therapeutic thing for me.
Oh Jen, I am so sorry for you guys... I know there will be lots of challenges ahead for you, but there should be rewarding ones as well... Things like this usually makes a family stronger...
ReplyDeleteKeep us up to date, and if you need to talk at all, we are here for you guys...
oh jen...we went through this with maelee rose...and i know how you a feeling...it turns out the she is not autistic but has what is hopefully (not the tight word...but the only one avaliable)childhood apraxia. gosh you know our children are perfect to us...but knowing all of their struggles ahead is heartbreaking. there is not a day that goes by when i think...maybe i will wake up tomorrow and everything will be "normal". then i feel bad...that i think that way...and of course that makes me feel worse. you are not alone. and with autism there are so many support systems...i just know you will be in good hands:) i look forward to hearing about your journey together...and even though this is a fork in the road...it has just steared you to the "right" path;)
ReplyDeletep.s. put a follow button on here too:) so we can follow easily:)
ReplyDeleteJen, the only thing I know is that kids do well regardless, if they are cared for properly..and he will, at his own speed, develop and maybe be a bit quirky. Those kids were always the most interesting to me.I have a granddaughter who was always a bit different, very loving, but responded strangely sometimes to social situations. She is now a sophomore at UC Santa Cruz and doing excellent, although we have now realized she has a mild Asperger's syndrome. Don't let the titles scare you. I do know that diet plays an important part of their behavior, a no gluten, no lactose diet helps tremendously. That is what I have to be on, because of lack of enzynes and when I cheat, I am miserable..Read up on diet and see if there is a connection. Jenny McCarthy is always speaking up on this, check her stuff out.
ReplyDeleteHugs, girl...it will be fine, just different and his funny Joeyisms will continue!!
What a journey. I can't say that I know how you feel, however I can say that being a mom is the most amazing thing that I have have ever done in my life. It sounds that you feel the same. Every child presents their own unique problems, mine included. Some days are better than others, but at the end of the day, I look at my son and it reminds me that no matter what has happened that day, he is the life of my life. Your journey may have bumps in the road. Just know that your famiy and your friends will always be there for you. I am proud of you! With much love and many prayers.....Lisa
ReplyDeleteYou are amazingly strong and I admire you for writing this blog. Christine and Lisa O'Keefe have worked with a lot of autistic children. You should definitely reach out to them. Also, I'm reading this incredible book right now called "Look me in the Eyes." Such insight.
ReplyDeletePlease kiss and hug Nathan for me. I'm sad that I only got to know him as a little baby. I bet he's growing up to be an incredible boy. :)
Kiss.
ReplyDeleteNathan is as lucky to have you and Steve as you are to have him. Someone gave this poem to me when Amelia got her diagnosis.
ReplyDeleteThis is written by BY EMILY PERL KINGSLEY, the mother of an incredibly special boy with Down Syndrome
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that "unique" experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The COLISEUM, THE MICHELANGELO-DAVID. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "WELCOME TO HOLLAND"! HOLLAND?? you say. "What do you mean Holland"? I signed up for Italy!!
But there's been a change in flight plans. They 've landed in Holland and there you must stay".
"The important thing is that they haven't taken you to a horrible, filthy, disgusting place, full of pestilence, famine and disease. It's just a different place"!
So you must go out and buy new guide books. And you must learn a whole NEW LANGUAGE. And you will meet a whole NEW GROUP OF PEOPLE, you would never have met!
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has REMBRANDTS!!
But everyone you know is busy coming and going from Italy and they're bragging about what a wonderful time they had there and for the rest of your life, you will say, YES, that's where I was supposed to go. That's what I planned! And the PAIN of that will NEVER, EVER, EVER go away, because the loss of the DREAM is a very significant loss. But if you spend your life MOURNING the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND"
Hi Jennifer and Steve ~ I don't know what to say in response, as this is new to me as well, but I know that you both are wonderful parents and that Nathan will be just fine. I'm sure you're overwhelmed at this point, and rightly so. Just know that you have a HUGE support system in your family and friends. Nathan is an amazing little boy and will continue to amaze you and everyone else who knows him, regardless of a "label". :)
ReplyDeleteLove you!
Debbie
Jen,
ReplyDeleteAs I read the comments here, I feel like I can relate to them, or did at one point. I want to provide you with another perspective.
CONGRATULATIONS!! You didn't know it at the time but you've given birth to a very gifted person, possibly a genious.
I read this and think about my own son, aged 19 now. He'd amaze me and drive me nuts too at a young age. (Still does.) When we first realized something was up with him, I was terrified and scared for him and his future. He was in second grade and couldn't read. He had a diagnosis - the wrong one, but it was a start - so his life was never going to be "normal" or "good" like us. I was so very, very wrong.
Call it being overly optimistic, but I call it good parenting. Focus on his gifts!! If you don't know what his gift(s) is or are, spend every ounce of your energy finding them. Make them bloom and grow, and so will he.
My personal belief is that all these kids on the spectrum are gifted in some way. Think of other people who are (or are likely to be) on it. Bill Gates comes to mind immediately. As does most of the engineers I've met living in silicon valley.
Yes, I have so many crazy challenges that other parents don't deal with - but so what? My son can write software, and if he doesn't want to do that he can write beautifully because he has a command of the English language that most "normal" people his age don't have, and never will have. We'll all learn how to deal with the rest.
Jennifer,
ReplyDeleteI had not heard of PDD-NOS before but it sounds much less serious than full-blown autism. You have always impressed me Jennifer, even as a
youngster, as one with tremendous courage and confidence. As the loving and caring parents that you and Steve must be, Nathan is in good hands!
Love,
Ray
This comment has been removed by the author.
ReplyDeleteOh Jen, this is crazy news but try not to worry too much. Nathan is such an amazing kid and this doesn't change anything (only now you will have more help in helping him). I won't be surprised if we find out the same thing about Graham when he's tested again next year.
ReplyDeleteGive me a call if you need to talk!
xoxo, Michele
I was just driving down the road the other day and saw a car that I thought looked cool and thought, "I bet Nathan would know what kind of car that is. I wish he were here to ask." I really like Nathan a lot!
ReplyDeleteMuch love,
Kathy
Jen,
ReplyDeleteI'm sorry to hear that you're under this stress and I hope that you guys are able to get the help you need. Nathan is a great kid and I'm sure that he'll be fine. Honestly, I believe that half of the people I know who lead perfectly normal lives would have been diagnosed with something if they had grown up 20-30 years later. They're somewhat annoying, but happy!
And don't blame anything else for the Star Wars geekiness other than Nathan's geeky parents, who are great parents and will work through this.
Jen London