Archive for June 2011
Yesterday I won. It was just a book, an autism-related book at that.
I’m not going to qualify it like that.
Yesterday I won.
I got something for free with hardly any effort on my part. I didn’t win something, but lose in another area. I didn’t win something, but discover that the prize came at a cost. I had an unqualified win. I needed it.
It feels like lately has been a series of Pyrrhic victories. Progress in some areas and more difficulty in others. Getting special education services for Cubby, but failing to get the occupational and physical therapy services he has been receiving. Or the speech therapy services he is beginning to require. Finding that her autism symptoms are lessening slightly, but gaining an additional three diagnoses. Improving Pudding’s ADHD symptoms, but with worsening sleep issues. Finally getting to try and add wheat back into the kids’ diets, but now a peanut allergy so severe we need an Epi-pen at all times. Learning that I don’t have tuberculosis as suspected, but asthma bad enough to require medication for the first time in 13 years.
Overall we’re doing okay. It feels like three steps forward and only two steps back, but it is taking all my effort these days. I’m not my best self, and I’m hoping that what I have is good enough. Familiar territory for me. I’m a good enough soldier to keep battling on, taking victories where I can, and accepting strategic defeats. I’ll even surrender some areas. This is just life in the trenches at times.
But yesterday I won. It doesn’t matter what. It feels good. I’m even starting to understand where Charlie Sheen was coming from.
I needed it.
Here’s to more wins for all of us.
Happy Wordless Wednesday!
For most people, life goes on. The years are punctuated with transitions, but for the most part time seems linear. Day by day, month by month, then year by year, time passes. Not so for us. Developmental disorders play tricks with time. Some things are s-l-o-w-e-d right down, for better or for worse. There is truly something magical about witnessing childhood in slow-motion. Every breakthrough is a special gift. And just when you think you start to understand, you’ll find yourself living through something that you thought was left behind. Then suddenly your kid is catapulted through progress, and a new phase of development begins.
Cubby is the exact age that Pudding was when we noticed her language difficulties. So many of the things that we noticed in Pudding at this time are emerging in him. It becomes impossible to tell which things are sensory processing challenges, which are behaviors imitating his sister, and what might be autism. Time will tell, but time moves slowly haunted by these ghosts.
Foreign Service life plays tricks with time too. The line of time becomes a series of connected cycles. Move, adjust, live, prepare, move. Somewhere between prepare and move, the whole process takes you back to the beginning. Right now I’m living through an almost constant feeling of déjà vu: the same events, places, people, and emotions from two years ago. I say that I don’t know if I’m coming or going, but they cycle moves on even if I feel trapped in time.
Cubby’s IEP meeting took place in the same place as Pudding’s first one. The same school and the same room. I sat at the same table. So I wasn’t present for that meeting. My mind was somewhere two years previously. Afterwards I’m finding it hard to forgive myself for not pushing harder for more services for him. Of course, we are moving, so Cubby won’t go to school there. Things will be different for him, but when I flashed back, it felt eerily familiar. Defeated and voiceless.
On Thursday we drove by the apartments I talked about here. I still remember sitting on the couch next to Pudding, trying to see if she would look at me when I called her name. Like time paused back then, the details are so vivid…the fabric of the sofa, the taste of salty tears, the too-bright orange of goldfish crackers that she could eat back then. I’m bracing myself for our return; we’ll stay there for a week before we leave for South Africa. I snapped out of my reverie to tell the kids that we would be going there soon. Prepare.
Pudding looked out of the window as we passed by. “It’s got a swimming pool.”
I can’t speak. Does she remember? It was two years ago, she was only 2 1/2 years old…how can she remember?
“And a playground.”
I wonder what else she remembers. At the time she didn’t seem to pay attention to our distress. I thought she didn’t notice when I cried, and I cried there a lot. I know better now. I know she is always taking everything in. Maybe she can’t respond appropriately, maybe she doesn’t have the language to tell us, but she remembers.
If I think I’m having flashbacks, I don’t know what it must feel like to her. We may be going through a cycle, but that doesn’t mean we can’t change it. Record some good memories over the painful ones. So in these last few weeks, I’m winding down the therapies, easing back on commitments. Making the time about them. Celebrating time, instead of fearing it. So when these flashbacks return, as they will in another cycle, we’ll welcome them.
Before we know it, we’ll be flashing forward to something new.
When Pudding was first diagnosed, many of our friends asked us what they could do to help, and we were completely at a loss to suggest anything. We didn’t have a good enough grasp ourselves on all the issues surrounding an autism spectrum disorder. Also, to be perfectly candid, I went through a phase where only I could do anything regarding Pudding. But we did need help, in many ways. And we were lucky that our friends found ways to assist us. Two years on I can identify some of those ways we did, and still do need help.
Here is what our friends did for us.
Waited for us to talk
Keep calling or emailing us. Even when we don’t reply. Especially if we don’t reply. Right after the diagnosis I was too frantic and preoccupied to keep in touch properly. I’m still grateful for Facebook to let me reach a number of people at the same time. Remember that a lack of response probably has little to do with you, and a lot to do with other demands on the parent’s time.
Try to gauge if and when your friend is ready to talk. I’ve described the first few months post-diagnosis as losing my voice. It took some time to accept the different route our life was going to take, and I wasn’t ready to discuss that immediately. Don’t be hurt or upset if your friend doesn’t immediately turn to you for support. My friends were patient enough to wait, and I opened up when I was ready.
We have struggled from the beginning to find a babysitter who would be mature and responsible enough to take care of our kids. To make matters worse, they both have extreme separation anxiety. A couple of our friends have come over to sit with the kids once we got them to sleep so that we could sneak out for a date. They’ve arrived early so that if the kids did wake up, they’d feel more at ease knowing who was in the house with them. Because our kids already knew them, we felt comfortable leaving. Parenting special needs children often means that couples don’t get time to themselves, which leads to even more stress. We can’t thank our friends enough for the times they’ve done this for us.
Bringing a date to us
When Spectrummy Daddy was in Afghanistan, Pudding was already on edge and leaving her at that time was out of the question. One Saturday night, a couple of friends came over with take out and dessert to take my mind off things. I’m sure they had better things to do on a Saturday night, but I’ll never forget their kindness. If you have friends who just can’t get out- go to them!
Keep inviting us
I’ve lost track of how many girls’ nights out I’ve missed. But once in a while, if a relative is visiting, I manage to get out and catch up. Those times are a tonic.
Our friends have also continued to ask us to things as a family. We’re lucky in that Pudding still enjoys parties, so we have been able to attend for the most part. Our friends have also been very generous about providing allergy-safe foods and activities that are suitable for my kids. A big point here is that they aren’t afraid to ask about what our kids do and don’t like, and I’m not reluctant to make an exit if it becomes too overwhelming.
Pudding is difficult to engage, particularly in social or chaotic environments. I’m always grateful for the friends who keep trying with her.
Our kids need to spend time with typically-developing peers, and many are in self-contained classrooms, particularly when they are very young. Our friends who had a child close to Pudding’s age have been great about encouraging play between them when our schedules permit getting together. Pudding learns things from play dates that I could never teach her as an adult, nor would she ever learn spending all her time with other kids on the spectrum.
Learn about our kids
I’ve lost track of the number of times a friend has sent me a link to an article about autism, or even a photograph of the White House fountain. Several of our friends read my blog, and get to learn a little more about the girl who only seems to talk in repetitive sentences when they’re around. You needn’t write a blog, but take the time to describe what makes your child tick, and what leads to overload. It took me a few months to become open to talking about Pudding and autism to our friends, but I have no regrets that I did.
Bought from our Wish List
Almost every time we speak to a teacher, therapist, or fellow parent, we learn about some new thing that our kid needs. Therapy equipment is expensive, and our kids are still kids too. They like toys, a lot. Because Pudding likes extra stimulation, we use a lot of new things to keep her interested and engaged. Friends have bought things like the sit ‘n’ spin and bead toys for sensory input for birthdays and Christmas. They’ve also bought things I wouldn’t have thought of that have been very beneficial, but more importantly- fun. Our friends and family have made sure that the kids toys aren’t all about learning, but princesses and trains too. The only downside? I never get a chance to write all my overdue thank you cards.
Do it from a distance
Admittedly friendships are harder to maintain from a distance. But special needs parenting can be isolating, and any way you find to show a friend you are will mean more than we can express. My friends have sent packages of chocolate and little gifts to show they still think of me. Even a postcard or letter lets your friend know you care, though you are miles apart. That way we still feel like we’re part of a community. Facebook, Twittter and Skype are great ways to keep in touch.
More ways to help
If you are able to do so, come with us to important meetings and appointments. Even after a few IEP meetings, Spectrummy Daddy was unable to leave work, and I was intimidated by the number of people in the room for Cubby’s IEP eligibility meeting. Even if you don’t know anything about what is being discussed, your presence would be a great source of support. Alternatively, taking care of the child or sibling would mean one less worry for the parents. If you can spare a couple of hours, it would make a huge difference to the stress of the day.
Remember the siblings. Often we have to prioritize the child with the most demands, and the other one gets overlooked and forgotten. Be sure to focus on the sibling so that they don’t learn that the only way to get attention is by imitating the behaviors of their brother or sister.
Many kids on the spectrum have problems with food and dining out. Some are very sensitive to textures and smells, meaning that only a few foods are tolerable for them. Many children can’t handle the noise and activity of restaurants and food courts. Still others are only comfortable in very familiar environments. And then there are those with food allergies or intolerances who need to eat a very restricted diet. If you are the parent dealing with the food issues, I promise that it soon gets unbearable. If the family are willing and able to get to a specific place to eat, consider taking them out for a meal, or buying them a gift certificate for a meal there. If not, find out about their list of okay foods, and prepare a meal. Even one meal less to worry about would be a godsend, and you might even develop a taste for extreme cooking. Not that I have.
That was long! Please let me know in the comments any ways your friends have helped you…or ways you’d like them to help.
To Whom It May Concern:
In an effort to conserve time, please read the following, and circle the appropriate apology:
I’m sorry I didn’t reply to your email, send you that thank you card, return your skype call.
Sorry I forgot to pay that bill, reply to that letter, keep that appointment.
I forgot to text you, then call you, missed the play date, and your birthday.
I wish I had joined you for lunch, for dinner, or for drinks.
I wanted so badly to come to your wedding, see your new house, meet your baby.
I meant to come to your shower, your party, for that shopping trip.
Sorry I was late, or rushing, and couldn’t stay.
I never found time to volunteer for your classroom, or attend the PTA meeting, or the fundraiser.
I said that I would bake cookies, or bring a potluck, or a bottle of wine, and then didn’t.
Sorry that when I do turn up, my mind is always elsewhere.
We should have played more, or did nothing, instead of therapy. I’m sorry: your sister needed me / your brother needed me.
I know you hate all the time in waiting rooms, and car journeys without end.
I should have picked up your dry-cleaning, cooked your favorite meal, made more time for you.
Just like I never had a pedicure, a facial, or just time alone for me.
My excuse is I’ve been busy parenting/ moving/ freaking out/ blogging/ driving/ trying not let somebody else down. So sorry to each and every one of you. And if you accept this apology, can it be good for the next decade or so?
Love and Kisses,
To the man who:
- wastes his days off on specialist appointments for the kids. Because he knows I struggle to do it alone.
- has finger-nose with Pudding (don’t ask) and orca (likewise) with Cubby. So that each kid has their own special daddy thing.
- gives up nights out with friends and weekend sports for playgrounds and pools. And never lets us know that he minds.
- gets up in the night so that I can get some rest, even though he gets up at 5.30 for work. Then brings me a cup of tea so that my day starts out well.
- makes up new wrestling moves to give the kids the sensory input they need. Then performs those moves on request, over and over, even at the end of a long day.
- sees how special our kids are, and accepts them as they are. But will do anything to help them overcome their challenges.
- offers a cranky wife a supply of hugs, shoulder massages, and feet rubs. And doesn’t mind when they are demanded.
- understands and indulges his kids’ special interests. Because he has them himself.
- has seen every member of this family at their very worst. And is still here, will always be here, even if he might have to live apart at some point.
- gives us the world. And helps us find our place in it.
- admits that quoting movie and TV dialogue is a tad spectrummy. But won’t stop…and has me doing it now too.
- looks good in blue. And pink.
- acknowledges that ironing is man’s work. And makes sure Pudding and Cubby see him in action.
- lets Pudding pick who puts her to bed, and accepts that it is never him. But keeps asking until the day she changes her mind.
- has become adept at finding hidden allergens in food. And a whiz at making gluten-free, egg-free, and milk-free weekend breakfasts.
- tells us he loves us every day. And we never doubt it.
I couldn’t imagine a better daddy for Pudding and Cubby. Thank you for all that you do.
Thank you to all the fathers who are here for their children, no matter what.
Thank you to those daddies who can’t be with their kids today.
Thank you to the daddies who have to be oceans apart, wishing they could be there for their children.
Thank you to all the mamas who have to be both parents to their little ones.
Thank you for doing it day in, day out. You deserve so much more than just one day to be appreciated.
Happy Father’s Day.