February 4, 2008
what it’s like
This morning, as I was making the boys’ lunches in the very early morning quiet, I was thinking about a conversation that Wade and I have every so often, about how we feel like we are walking a fine line between wanting to help our kids, particularly Henry, fit in socially and not wanting to encourage them to grow up too fast. Wade always points out that one of his favorite things about Henry is that even now, at seven and a half, he still takes his stuffed buddies to bed with him every night, arranging them carefully in his bed. When Henry was sick, last week and the week before, he dragged his Elmo around with him for days, and would hug it lovingly and announce, “Elmo is my favorite stuffed friend.” We both find that deeply charming at the same time that we know he would certainly be mocked endlessly at school if his friends knew.
After I took the boys to school, I went to start some laundry, and wrapped up in Henry’s sheets was one of the stuffed friends, his bear Smash. The sheets have been in the laundry room for days, and the poor bear has just been there, waiting to be freed or washed. I put him on the table near my laptop.
A little later, while I was working, I came across this article in the New York Times, about how kids with ADHD see themselves. And as I read it, I found myself weeping, because it was both so encouraging and so heartbreaking.
Just like parenting Henry.
Henry is doing well these days; his grades are fantastic and he’s reading books that are well above grade level. He is playing basketball and has made friends with kids on his team and in his class. He goes happily to school each day and comes home full of things he has done during the day. Occasionally he will say that someone has teased him or said that he is weird, but mostly he seems to be fine.
Recently I had let go of my concerns about Henry’s disabilities, about his tentative place on the autism spectrum, because things are so good. But then last week I talked to our developmental pediatrician, who prescribes Henry’s meds, and who very kindly does not require that I haul my child halfway across town for a $125.00 office visit every time he needs a refill, but who does want to catch up a bit before he calls the pharmacy. This time he asked about Henry’s social skills, and I had to admit that he still has tantrums when he’s frustrated. The doctor asked if we were seeing anyone for that, and I had to say no, we’re not. But then I started to wonder if maybe we should be.
The doctor said that more and more he is coming to believe that ADHD is indeed an autism spectrum disorder. He reminded me that all of the studies that argue that kids with ADHD are just a few years behind their peers developmentally do NOT say that it is really not until the mid-20s that kids like Henry finally catch up. The early 20s, he said, can be incredibly hard for kids with ADHD.
That wasn’t really what I wanted to hear.
The hardest thing for me about parenting Henry has been the sense that every time I get my feet under me, the ground moves again and I am left struggling to get my balance. I think Henry is doing well, I can see that he’s doing well, but now I am worried all over again, and I am worried that maybe I’m not really helping as much or as well as I could be.
One of the things that I am trying to let go of is that constant worry; I’m trying to look at my children, both of them, and see not what might go wrong but what is going right. But I worry that with Henry, if I’m not ready for the disaster, I will be completely overwhelmed when it comes and will not be able to help him. And so I wait for the next bad thing, which is never — ever — the bad thing I was waiting for but always something I am completely unprepared to deal with on the fly.
My only hope, honestly, is that Henry will look back one day and realize that even when I had no idea what the hell I was doing, I was still right there, trying to do something. Or just loving him for who he is.
Posted by Susan @ 8:26 pm • 30 tiny moments, fretful and worrisome
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February 4th, 2008 at 8:42 pm, Kristen Says:
Wow, that’s heavy. In a really beautiful way.
One thing I’ve got to say (as someone with no kids and very little experience with ADHD) is that I hope YOU see yourself there and appreciate the fact that you always are trying to do something. That’s pretty much what life is, anyway, and when you look at the beautiful moments you have when you’re trying to do something, anything, you’ve got to know you’ve done something right.
Hang in there, kid.
February 4th, 2008 at 9:44 pm, Jenn @ Juggling Life Says:
Your right, the worries are a little different when you have a child that is not “normal.”
I have one son with Tourette Syndrome. He is very bright, a gifted athlete, and popular. Still, I share many of your concerns. My son is 14 now, and the next few years are critical; you just don’t feel like you can ever relax.
February 4th, 2008 at 9:55 pm, christine Says:
I also have a child with Tourettes. She has a touch of OCD and ADHD. She was on an antidepressant at age 8.
I have depression, and understand where all of that puts her statistically during adolescence. Some days it’s just too much to think about.
She does so well, even on a bad days. She’s so smart and determined and amazing. Yet, it doesn’t take away that fear and concern for what they MAY face.
Just for the record, I have an eight year old that still sneaks his blankie to bed with him. He acts as though he’s just cleaning up his floor (yeah … as if THAT is what he’s ever doing!!).
February 4th, 2008 at 10:01 pm, slynnro Says:
You are just the sweetest mom, and Henry is lucky to have you.
And, just because they get older doesn’t mean they outgrow their stuffed friends:
February 4th, 2008 at 10:04 pm, Annika Says:
If I ever find myself with a kid who needs a little extra attention, I am absolutely going to model myself after you. I am so in awe of the way you parent Henry. I really think you are wonderful.
February 4th, 2008 at 10:52 pm, Headless Mom Says:
Henry is blessed to have a mom like you. Concerned, loving, prepared, and willing to let him be Henry. I think that is what we all want for our kids, and you regularly rise to the occasion!
Bless you and your sweet family!
February 4th, 2008 at 11:49 pm, Nina Says:
Both my brothers have ADHD, and especially with the youngest whose ADHD was more severe, I don’t ever remember a time when it was good. Just remember it getting worse and worse and worse till his early teens when the world seemed to explode in our faces.
My parents never knew what to do. They never trusted the mental health community. I think Henry’s fortunate that you you were able to help him from a young age and that you have all these resources for him.
I think you can only do what you are doing…trying to do something, loving him. I wish I could say something more helpful, but all I can say is that it makes me happy that, even if my brothers never got the help they needed, that other kids with ADHD now are. (don’t mean that as a swipe at my parents, who I do believe tried their best, but things were very different when we were young compared to now).
February 4th, 2008 at 11:58 pm, Becca Says:
I don’t comment a lot, but I wanted to because I am on the autism spectrum. Henry is so lucky to have a mother who is trying to help him, and who is aware of the problems that he will have. I love that you don’t try to convince him that he shouldn’t be playing with the stuffed animals anymore.
I cringe a little when it comes to the topic of teaching social skills. I understand the argument that it will help when dealing with people, but I also know that at that age, I wasn’t ready to do that. I was sort of forced to, and that hurt me. Which is not to say that it will hurt Henry, and from everything you’ve written here I would imagine you would watch out for this sort of thing. And of course helping him with coping skills, if that’s what you meant, would be great. I realized not to long ago that I didn’t really have any copy skills, on the spectrum or not, because I didn’t know any NT ones and I so repressed the spectrum ones in an effort to be “acceptable” to my parents that I never learned them. No coping skills is not a good place to be.
I don’t know if I’m wording this quite right. I think I’m speaking up because I feel a sort of kinship with people who are dealing with similar issues. I’m deliberately not saying the ways I was hurt by what happened, because first of all, this is not the place for me to whine about my mother, and second of all, my problems are my responsibility now, and I work hard to stop the bad thought patterns and figure out ways to be a happier, or at least less unhappy, person. So I guess what this boils down to is that something like this might help him, but please don’t expect that he will be able to have an easier time at 20, or be like everyone else then. And please listen to him like I think you do, to make sure that if he does this he isn’t being pushed somewhere he shouldn’t be. You’re doing good by him now, if he feels comfortable enough to act out when things are making him upset. Loving him counts for a lot.
February 5th, 2008 at 1:44 am, Stephanie Says:
Susan,
I just want to say that Henry is lucky to has such thoughtful and concerned parents who are doing their very best to help him make his own way in the world as best he can.
I think that really, that is all any of us can do, and I am positive that he and Charlie are blessed to have you and Wade for his mother and father.
February 5th, 2008 at 1:59 am, Stephanie Says:
Also, I think that Henry will know (and already does) that regardless of how superior or competent you may feel you are,(we are always our worst critics) you are in fact exactly who and what he needs and you are right there with him.
I know I don’t know you personally, but from what I read, you seem like a pretty awesome mom.
Oh and completely off-topic, I see that
I should have proof-read my previous comment. I wrote the word has instead of the word have. I hear English professors screaming in my head as I type.
February 5th, 2008 at 7:02 am, Javamom Says:
I have no experience with any of the conditions mentioned here, but here is what I think:
Henry will remember all those wonderful moments he shared with his brother and parents no matter what the outcome down the road. Right? I remember one post a while ago that put an image in my head, something about you walking with the kids and all were holding hands and you felt all happy and linked together….THAT is the essence.
February 5th, 2008 at 7:08 am, Erin Says:
My daughter, as you know, is also “tentatively” diagnosed with an ASD. Please, please let me know if you ever want to talk. Not that I’m an expert but everything you say here so resonates with me.
February 5th, 2008 at 7:46 am, standing still Says:
I suppose that it’s no help to say that it does get better … your feelings of intense worry. You will year by year integrate all of the successes he has, your picture of him as a whole person separate from you will become more clear, and you will begin to see the intense and real possibilities for him rather than the deficits. He will not be you. He will not be Wade. He will be Henry, and he will be fantastic.
February 5th, 2008 at 8:55 am, Crisanne Says:
Just think-if we, as strangers, can feel your intense love for each of your children…Henry and Charlie will feel it that much more. They will know that you loved them both individually and thay you always made the best decisions that you could in that moment.
February 5th, 2008 at 9:17 am, Chris Says:
Thanks for sharing both the article and your own story.
My son has been diagnosed with ADHD but now we’re moving towards an Aspergers or PDD diagnosis because of all the issues. The constant worry you mention is so, so tough. Every day I wait for my phone to ring at work for me to go get him. It’s tough and I’m still finding my way through it.
It sounds as though you’re doing an amazing job at parenting your son - keep up the good work!
February 5th, 2008 at 9:35 am, Clara Says:
Thank you for writing about this.
D has never been diagnosed with anything. At the same time, he is immature and still has a tough time expressing his feelings. He also seems to be in his own world a lot of the time. Kindergarten is coming our way in a short 7 months and I am fraught with worry about how he’ll cope with being in that environment. Like Henry, he’s doing great academically, but the social part I worry about.
It’s the worry that makes us look for solutions that aren’t one size fits all. It’s the worry that makes us see both the fabulous and the stressful part of children. It’s the worry that makes us great parents. And you are certainly one of those.
February 5th, 2008 at 9:46 am, Meegs Says:
This brought tears to my eyes Susan… beautiful and heartwrenching. You are a fabulous mom, and I’m sure that Henry knows just how much you love him and how there for him you are.
Your worry is natural. It’s your love for your son pushing you to try and make his life as wonderful as possible. Remember that in life there are always setbacks… Henry’s might be more obvious or on a larger scale then other kids, but everyone has them. You just have to keep pushing through, and meeting the challenges as they come.
Best.
February 5th, 2008 at 10:42 am, Emily Says:
Susan, I’ve been reading your blog for some time now but I don’t think I’ve ever really commented. This post really struck a chord with me and I feel compelled to comment. I’m not a parent (and won’t be for years!) but I can empathize with your situation here. My boyfriend has a slew of reading disorders starting with dyslexia and running all the way to attention deficit disorders and yes, it is a struggle, but he came from a loving family that offered all the support he needed and more. At 24 years old, he is in his third year of university doing a double major in history and poli sci, he holds an A- average, and he is one of the most well-adjusted people I know. I met him when he was 18 years old, just graduating from high school, and though he had moments where he struggled academically, he’s been lucky enough that he had some great teachers who inspired him and a really strong family. His parents are his biggest cheerleaders and although I’m sure they spent a lot of time fretting over how he would do socially and academically, they supported him every step of the way.
It’s not the worst thing that can happen (and I don’t mean to insinuate that’s how you’re feeling) and although it has set him back in some arenas, it has given him some great opportunities. In school he has a great advocacy group and ways of facilitating testing and essay writing are provided to him at no cost.
As his girlfriend, I’m completely biased, but he is absolutely my favourite person and I (along with all of his friends) know that it doesn’t define him. Just remember that no matter what happens, Henry will still have a great family and SO many opportunities in life. Whether or not he’s formally diagnosed or needs treatment or medication, just remember to stay his biggest fan and advocate and he’ll be just fine.
Sorry for the long comment, but it’s a subject I’m really passionate about and just wanted to let you know that in 20 years, everything will still be fine!
February 5th, 2008 at 10:47 am, Trina Says:
Susan, what beautiful things you have to say about childhood, and about protecting your guys. I worry about the long road of adhd with my 6 year old preemie; hearing mommies with similar ideas makes me feel better- take care Susan.
February 5th, 2008 at 11:07 am, Penny Says:
You and Wade are wonderful parents. And I can say with complete certainty that you ALL will be fine.
Thanks for sharing your heart.
February 5th, 2008 at 11:20 am, Kara Says:
My friends and I agree that the best and only thing we ever needed from our parents was this: That they showed up.
Your boys are going to be, are, absolutely fine, just as and who they are right now, tomorrow, and when they’re 20, 30, … .
I know you know that
but I felt the need to type it out.
February 5th, 2008 at 11:42 am, arduous Says:
What a beautiful post. Henry is so lucky to have a mom like you.
February 5th, 2008 at 1:36 pm, Deva Says:
I am going to be 22 in two weeks, and i still sleep with stuffed friends.
You are an amazing mom. Henry is so lucky that he has you.
February 5th, 2008 at 2:00 pm, Melissa Says:
“The hardest thing for me about parenting Henry has been the sense that every time I get my feet under me, the ground moves again and I am left struggling to get my balance. I think Henry is doing well, I can see that he’s doing well, but now I am worried all over again, and I am worried that maybe I’m not really helping as much or as well as I could be.
One of the things that I am trying to let go of is that constant worry; I’m trying to look at my children, both of them, and see not what might go wrong but what is going right. But I worry that with Henry, if I’m not ready for the disaster, I will be completely overwhelmed when it comes and will not be able to help him. And so I wait for the next bad thing, which is never — ever — the bad thing I was waiting for but always something I am completely unprepared to deal with on the fly.”
These two paragraphs so perfectly sum up my feelings on raising my four children as well. They do not have ADHD, or Autism, but are all deaf/HOH. As soon as I feel like they are functioning well, we’re having no new issues, something pops up. One of their hearing tanks, or suddenly I find out we should have been doing something that I wasn’t aware of (and then you worry about how much you’ve messed them up
Thank you for sharing, and for putting into writing what so many other parents feel.
February 5th, 2008 at 2:06 pm, Lisse Says:
Thank you for writing that. We are preparing for our “sensory” son to have a complete evaluation, and even though we will be able to help him better with more answers, I’m also nervous about the whole thing. Can’t really say why.
Thank you also Becca for validating something I felt as a child, and that I also feel for my children when they struggle to find their place.
February 5th, 2008 at 3:06 pm, STL Mom Says:
As the mom of a 7 1/2-year-old girl diagnosed with learning disabilities and ADHD, I loved this piece because it expresses so many of my own worries. Her dad thinks our daughter doesn’t have social problems because she’s so friendly, but I see how easily she gets upset, how she screams when she thinks someone is laughing at her, or how she will keep hugging a friend who is saying “let go!” and I worry that there will be trouble down the line.
February 5th, 2008 at 4:17 pm, Sue Says:
This is so beautifully written. Henry has the best things any kid needs, but especially kids with “issues” - parents who worry, read, watch, listen and show him that he is loved. And enjoy him for who he is. You are doing a wonderful job.
The Other Sue W!
February 5th, 2008 at 8:20 pm, Maddy Says:
Seems like you’re doing a [damned] fine job to me. Love it.
Cheers
February 5th, 2008 at 10:02 pm, Susan too Says:
My almost 10 year old and his almost 7 year old sister bond over their love of stuffed animal toys. They set up an animal nursery and day care at Thanksgiving that is still going, and they sleep with favorites every night. I think its sweet. So there.
February 6th, 2008 at 6:13 am, Paulla Says:
I’ve been reading your blog for a while and had to comment on this for two reasons. First, I have a nearly 21-year-old son who still has his first teddy bear, “Snowflake.” For the past many years, it’s been stuffed back in a shelf in his closet, but he still has it and always will. Last year, when he moved into the dorm at school, his girlfriend insisted he take Snowflake with him. It now sits on a shelf in his dorm room. I love that!
My second reason for writing is just to encourage you in what you said about kids with medical issues and the feeling that the ground keeps moving. I have a daughter with epilepsy and chronic migraines, and we deal with much the same feeling on a regular basis. It seems that once the headaches are a bit under control, the seizures become more frequent, and vice versa. Seems to be a balancing act much of the time.
Hang in there, friend ~ like you said, in the end, when he’s grown up, he’ll remember that you love (and loved) him.
February 6th, 2008 at 8:42 am, Helen Says:
I too wept this morning when I read your post and the New York Times link. You have captured so well the fear and uncertainty I feel as a parent of a child with ADHD. I know in my head that our love and support are the greatest gifts we can give our daughter, but there’s always this nagging fear that love is not enough. Every day, we watch her go out into a world that doesn’t love her the way we do and doesn’t appreciate her gifts because it can’t see past her “differentness.”
Our daughter is now a junior in high school and a straight-A student, but she’s still awkward socially and has no close friends among her peers. She relates better to adults, who are able to look beyond her quirks to the glorious person inside.
We are preparing to look at colleges and, as you said, it feels like the ground is shifting beneath our feet. I realized this morning that it’s always been like this. Just when we think we’ve settled into a groove that works for us, there’s a change and we’re at a loss as to how to handle it.
Should we encourage her to go away to college, to spread her wings and fly? How do we do that when we know all the trouble “normal” kids get into in college, never mind our child, who struggles with the social skills necessary to navigate the waters of peer relationships? Are we setting her up to be a victim, isolated and prone to depression? Or should we let her stay home and go to college locally (her preference), continuing the status quo, where she has no close friends, but has the love and support of her family?
I have no answers, only hope. I continue to hope and to trust in our instincts because I can see after 16 years with this struggle, the progress and positive results of our affirmation and advocation. I think that’s ultimately what relieves our fear and anxiety - the ability to look back at the road traveled and see the difference our efforts made. The accumulation of small successes gives us greater confidence in our parenting and helps to put us back on solid ground.
February 6th, 2008 at 1:00 pm, amy Says:
You put this beautifully, Susan. No answers here from me, but we can entertain each other in the trenches.
February 6th, 2008 at 3:44 pm, Mina Says:
I have to say, this was a timely post for me. You just expressed a lot of what I’ve thought and felt with my two middle children…boys who have quirks and oddities that made me decide to have them evaluated. My 2 1/2 year old is tentatively diagnoses with Sensory Processing Disorder, and I just had my first evaluation with my 3 1/2 year old this afternoon, at which point I was told that she thought he was borderline ASD. The label of “Autistic” scares me, but oddly enough my children’s behavior/oddness/etc. does NOT, because they are gaining skills all the time, they are obviously highly intelligent (both boys knew all their letters and letter sounds by age 2, 3 1/2 year old is starting to spell words), and because a lot of the behaviors are not foreign to me, having exhibited some of them myself growing up.
I sometimes wonder why we don’t allow people to be different anymore. As a child I was not very social, and preferred playing by myself. Even now, I have a small group of close friends, but am not comfortable in large crowds. And shouldn’t that be ok? Does everyone HAVE to be the same socially, academically, and behave the same way? Aren’t we all individuals with both strengths and weaknesses?
I admit to being afraid of the road ahead with both boys, not because the boys themselves are a problem (none of their behaviors cause any real issues for us), but because I am concerned about them being forced to be “normal”, instead of being able to be themselves. Because who they are individually is pretty darn special.
February 7th, 2008 at 1:17 pm, Jenny Says:
We all worry about our children – regardless of their abilities and disabilities. It just goes along with parenting. We all worry that our kids won’t find their place in this big bad world.
My nephew is one of the one in 166 children who live with autism. If your readers would like to find out more about living with autism, I encourage them to take 13 minutes and watch this short film produced by Autism Speaks. The film was expanded into a longer form that premiered at the Sundance Film Festival in 2007. http://www.autismspeaks.org/sponsoredevents/autism_every_day.php I would also encourage them to take a few minutes to look at autismspeaks.org.
February 7th, 2008 at 1:28 pm, Friday Playdate » the one thing that came after the other Says:
[…] « Previous Main […]
February 20th, 2008 at 2:34 pm, Raven Says:
This is a beautiful post.
My nephew is struggling and I think it’s due in part to parents that don’t really see his problems for what they are. The fact that you really seen Henry for who he is, is the best service you can really do for him.
February 22nd, 2008 at 9:49 am, Jenn @ Juggling Life Says:
I just wrote a post that I think you would relate to. I wouldn’t normally link to myself, but I’m going out on a limb because I think you might find it interesting. I have 2 boys with some issues myself.
http://jugglinglife.typepad.com/juggling_life/2008/02/pontification.html
March 22nd, 2008 at 7:10 pm, Woulda Coulda Shoulda » The sounds only he can hear Says:
[…] ago my friend and fellow mom to a “different” child, Susan Wagner, wrote a piece called What It’s Like which I have often, secretly (until now) gone back to read when I need a little boost of […]