Archive for November 2010
And so we drove through Virginia, North and South Carolina, Georgia, and finally arrived in Florida. What do we do on our first full day here? No, not the beach. Not a theme park. Our first full day in Florida, and we go to the dentist.
We went to the dentist here last summer when we were on home leave, and it was a great experience. I still have bad memories of going to the dentists as a child, so I wanted it to be different for my kids. Of course, I am talking about time BD (before diagnosis). Now that I’m familiar with the sensory issues and amazing memory that are components of Pudding’s variety of autism, I’m even more determined that her early experiences go well. Last summer, she came out of the appointment with an A+ on her dental report card, a Dora toothbrush, and best of all, a smile on her face.
I’ve asked pediatricians, teachers, and mothers all around where we live for a good dentist recommendation, but nobody ever had a suggestion for us. My friend Alysia wrote a post about her great experience, and I knew I had to make a return visit to the dentist part of our trip. I called the office up, and explained about Pudding’s diagnosis, and her brother’s sensitivities, and asked if they could still help us. The receptionist said the magic words:
“We serve all kids of children here, and we’re very familiar with sensory issues.”
Oh yes, they’re worth driving through four states for an appointment.
I’d found a social story about going to the dentist, and we’d practised at home. Pudding was a little nervous, but she really enjoyed helping the assistant. She particularly liked placing Mr. Sucky in her mouth. Her teeth are in great shape, and we made it through another visit with no tears- success!
Her brother wasn’t quite as enthralled with the whole experience, but we got some great tips from the dentist about how to approach cleaning the teeth of a toddler who is so sensitive. He was fine once he was given a new car.
I can’t control every experience for my kids. I know some will be good, some will be bad, and that is part of life. They’re going to have to learn to cope without my protection. But I can reduce their anxiety where I’m able to. When I find people who understand, who make kindness and patience the bedrock of their professionalism, I’m going to hang on to them. I’m perfectly willing to travel through the US for such a positive experience, and I dare say if I can’t find another such gem wherever we move to next, we’ll be flying back to Florida again.
Don’t worry though, dentist visits aren’t going to be the highlight of this trip!
Today is Thanksgiving Day, for those of you outside the US. In the spirit of Thanksgiving, here is what I’m thankful for. Wow, can I really cram all that into a blog post? I don’t think I could do any of the people I need to thank adequate justice, but I will try.
I’m thankful for the teachers, doctors, and therapists who dedicate their professional lives to helping my children and those like them.
I’m thankful for those of our family and friends who have taken the time to learn about how to better interact with Pudding, and persist in connecting with her as difficult as that might be at times.
I’m thankful for the incredible kindness and generosity certain people have shown us lately- you know who you are!
I’m thankful for those who love and accept Pudding as she is.
I’m thankful for my husband who does everything for us, and who doesn’t back out when he returns home in the evening and sees the crazy that is waiting for him inside.
I’m thankful for my kids, who fill my heart, and make me try harder every day.
I’m thankful for this wonderful community I’ve found online. I have virtual shoulders to cry on, and new friends to laugh with. You’re amazing, and it is a privilege to walk this path with you.
I’m thankful for those who get it.
I’m thankful for Skype. It kept me connected to my long-distance boyfriend until marriage, my husband in a war zone, and my parents on another continent. It has allowed me to meet my niece and nephew. It is one thing to talk to someone, and another wonderful thing entirely to see them in real time. I mean it when I say I can’t imagine living this life without it.
I’m thankful that this holiday is not a UK tradition, so I can legitimately delegate all responsibility for it to my husband.
I’m thankful to whoever posted a gluten-free play dough recipe, which gave me the precious time to write this.
Last of all, I’m thankful to you for reading this. Thank you for caring enough to read my ramblings these last few months.
Dear Future Me,
I’ve been wanting to have this chat with you for a while now. You see, Present Me is having a hard time making decisions lately. I feel the huge, heaving consequences of every choice. Every minor detail feels like a fork in the road, and I don’t know which way to go. I’m not even sure I’m the one who is driving any more, nor do I even know where I’m hoping to get to. Are you like this, Future Me? Or do you have it all figured out? I like to imagine so. I like to imagine that you have a suave confidence, a trust in your decisions. I’d like to see that, rather than soliciting endless advice that leaves us more confused.
If you do have everything worked out, Future Me, would you mind sharing some of your secrets? Is it too much to want to join in the courage of your convictions? Have you already done that, once before? That time right after we returned to the US, and I took Pudding to the pediatrician. When I shared that I thought something was unusual about the way Pudding talked, and the way she played with other children. When that doctor told me I had nothing to worry about, was it you who whispered that she had it wrong, to trust in my instincts? If that was you, can you do it again? The uncertainty is too much, and you seem to know so much more. Can you help a sister out?
If I do it wrong, if I make mistakes, will you be forgiving? Is that who you are? Will you tell me I did the best that I could? Or will you choose to berate me for going the wrong way. Will all the ramifications fall at Past Me’s feet?
Is this all part of the journey? That I need to learn that I don’t know everything, that I’m going to try things that turn out to be mistakes, and that is okay. Is that your message? I’m sure there is a kinder way, Future Me. I’m finding you kind of annoying, when did that happen? Can you tell me what will happen with the kids? What do we need to do for them, what do we need to stop doing? What helps, and what hinders? You won’t even say that, Future Me? Do you even know? Is that why you stay so silent? You know nothing, in your omniscience.
One last thing, Future Me. Will it be okay? No reply?
No need. Watch out, Future Me. Present Me is coming quick on your heels (I hope you are wearing nice shoes by now).
Picture the scene: I’ve just put Cubby down for a nap. I have a moment of peace before Pudding returns home for the day from her preschool autism class. A phone call disturbs me. It is one of the researchers from the sibling study.
“I know you have concerns about your son’s development, so I wanted to give you a call before we sent the report.”
I sit down, and breathe in. I am braced for the bad news. I am ready this time.
“At this data point, your son does not meet the criteria for an autism spectrum disorder.”
My face is a picture of incredulity. The camera zooms in to capture my expression. I remember my lines. I ask if they are sure, if they scored the ADOS. I ask if that can really be true.
“Yes. His scores don’t come close.”
I ask about his self-regulation, motor skills and sensory issues. I remind them that he is only 19 months old, he could still regress. Maybe his sister did just that.
“All a concern, but with his language, social reciprocity and joint attention being so good, we just don’t see autism. We aren’t concerned. Just keep doing what you’re doing. We don’t want to see him for another six months.”
She hangs up the phone, and the camera is still fixed on my face. I have read the script. I know I should be showing relief, joy, perhaps jubilation. I want to feel those things, but this is not that kind of movie, and before long, enter the villains, those merciless scene-stealers: Fear and Guilt. I’m going to have to fight them. I can handle myself, I do my own stunts. There will be a montage of battles and victories.
Fear that this scene would repeat itself, just like when the pediatrician claimed my daughter was fine, not to worry. The pain of finding out otherwise. I defeat Fear by reminding herself that my daughter is fine, she just needs more support, and she gets it.
Guilt that we missed the signs in Pudding. That she needed help before, but we didn’t see it. I let her down. How do I ever defeat this one? I remind myself that I didn’t know the signs then. As soon as I suspected something was amiss, I dealt with it, pursued it relentlessly. The knowledge wasn’t written into the script until then. If we’d known then what we know now, it would be different, but I can’t travel back in time.
Actually, I can. That is the magic of movies. I just haven’t wanted to until now. Guilt has kept me from doing it. I wasn’t ready before to watch home movies of Pudding, but this week I did. I watched them for Cubby. And I see it. I see how rarely Pudding looks us in the eye. I see how she is fixated on objects around her. I hear the echolalia that I confused for speaking in sentences. I see autism in all its technicolour glory. I see it a little at 12 months, more at 18 months, and strikingly 24 months. The signs are subtle, but they are there. But I also saw two parents who are desperately trying to connect with their little girl. Even when we didn’t know that we had to engage her, that is what we were trying to do. With that I knock out Guilt. We didn’t know, but we were still trying. We were doing our best, with what little skills we had. Improvising.
And here we are, yet another plot twist. Perhaps there will be a flashback scene of Cubby staring at fans and lights, or flinching from somebody’s touch to illuminate my confusion. Maybe the audience will just settle more comfortably in their seats, knowing there is a long time to go before the credits roll. We really don’t know what is going to happen, whoever is directing this hasn’t shared their vision. There is a lot of improvisation going on and at times, I wish I could shout “cut” and do a retake. Whether he is on the spectrum or not, Cubby will make a most charming leading man. Pudding? She is the star. The talented Diva who commands your attention. I’ll settle for being the supporting actress. I don’t think there will be an Oscar in it for me, but I enjoy being part of the production nonetheless.
This post was originally published at Hopeful Parents, you can find the link here.
Four years ago this week, I was 38 weeks pregnant. I didn’t know you then. I didn’t love you then. I was two weeks away from meeting you for the first time. I willed myself to have maternal instincts, but they just weren’t there. I took care of you, by taking care of my body that was housing you, but I was just a caretaker. I wasn’t your mother then, I was somebody else.
I wonder if I’d been able to see the future what I would have thought. If I didn’t feel ready for motherhood, how on earth could I have been ready for special needs parenting? What would my intact heart have thought about the thousand times it would break?
Would I have looked at you, my sweet, amazing, resilient, determined child and known how proud I would be of you? Would I have been surprised that there are people all over the world who love and root for you every day, cheering at your small but significant successes, some without having ever met you? I’m not the only one to take delight in your your extraordinary everyday achievements. Back then, I didn’t know any of this.
How would I have felt knowing that I was giving life to such an incredible soul? One who giggles at jokes the rest of us don’t hear, but are so captivated by that joyful sound that we join in, wishing one day we would understand. One who sees things differently. One who is so much more. One who sometimes feels with such intensity that she has to shut herself off, and withdraw even from those who love her best. I didn’t know then the ache of not being able to reach you, or comfort you.
As I was packing my bag for the delivery room, I didn’t know how hard this world might sometimes be for you to live in. I didn’t know how strange and scary it might seem. If I did, I might not have been wishing that you vacate that cozy refuge. If I’d known that some people might misunderstand your unique ways, I might have been content to shelter and protect you as long as I could.
I didn’t feel any of that, I felt nothing but a fear of what a more than 9lb fetus would do to my body. Me. It is a good thing I put myself first then. I didn’t know that once I met you I’d never be able to do it again.
That nothing that I felt exploded into everything when I first saw you. When I held you in my arms and you looked up at me, the switch was flipped, and I became who I am now- your mother. I’m still awed by the intensity of your gaze, when I’m fortunate enough to receive it. My heart was flooded with those elusive maternal instincts, so I said the only thing I could manage. It wasn’t profound, it betrays all the love I have felt for you then and since: “You’re my baby.” And four years later, you still are. But now you’re a sweet girl who dazzles everyone who meets her, and one day you’ll be an incredible woman, and I look forward to meeting you all over again.