momtuition

Accepting The Unexpected

Posted on: April 2, 2012

Today is Autism Awareness Day and this (post below) is the first in a series of five articles which (I will be writing) will be featured in The Daily Observer for the month of April.  I hope it brings some comfort to someone who is still trying to come to terms with an autism diagnosis.

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A parent once said to me… “I wish I could be more like you. You’re so outspoken about your experiences with your son and how you’re coping and I’m finding it so hard to think about anything else but my son is going on 7years and still not speaking.”  It was in response to a post (titled: Ten Fingers & Ten Toes) I had written on my blog last year on Father’s Day.

I’ve been very candid about my situation but this is something (comments like these – This was not the first occurrence) that stops me in my tracks all the time. The thing is… I know I seem pretty sane. And I am most days. I seem pretty optimistic, hopeful, positive – By the way I think all those words mean pretty much the same thing; right? But I am really. At least that’s the case now.

But I remember…

When Kuba (my son) was first diagnosed and I used to cry (the ugly cry at that), because we didn’t know what to do, where to begin, who to talk to – Added to that it felt like all our hopes and dreams for our son were beginning to crash and burn. I literally felt like we were the only ones going through this. I often wonder if I had been as outspoken back then as I am today whether or not our story would have been one of more doom and gloom and profound sadness as opposed to one of “It’s ok… You can do it! Autism is not a death sentence.” I’m not going to lie. We didn’t get here overnight plus there are still days when we struggle with the challenges we face but here are some of the things that helped/help us:

We began talking – Or perhaps I should say “I” began talking because his dad isn’t much of a talker but one of his biggest supporters. So I began talking very early to everyone about any and everything. Our worries our grief, all the time trying to find out where we can get help.

I forced myself to quit obsessing about other parents and what I thought (at the time) were their “normal” kids. Like I‘ve said many times… “Everyone’s normal is different.” Actually I think the word is sometimes overused and dangerously interpreted. The same goes for “perfect”.

I realized that I had to make a conscious decision to search for happiness. I’ve learned to be very happy for what I have and not sad over what I don’t have – And these days when I feel down; if a little cheesecake don’t help… Just kidding – I look through Kuba’s books and I see how far he’s come with his writing or I take him out to eat just the two of us and I let him order from the menu on his own – And I know the waiter/waitress is about to smile because his order will be, “Fries on a plate with ketchup”. He’s very precise and thinks very literal, a common characteristic of autism. When I see this happen it makes me happy because at one point I thought he would never speak. Other days I would just call another mom, sometimes just to ask how their kid is doing and we’ll end up talking for hours. And let me tell you… There’s nothing like having a real conversation to help you beat the “blues”.

Another obsession I gave up? Actually I should say one that I’m still learning to cope (to some extent) with, is feeling the need to read everything (about autism) that I come across or that someone tells me about. Also I stopped, very early, looking at developmental milestones. Talk about torture and stress! Something I genuinely believe our children absorb and I think it probably impacts their development in some way. Now I look back and wonder why I felt the need to punish myself. Parents, if you’re going through this right now here’s a word of advice. Stop! I know… I thought I was going to say something more “deep” too (LOL). Ok, here’s something that worked for us. Setting our own goals – Ones that you can change. The ones in the books and on the websites you can’t. It’s like the serenity prayer… “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the… Ladies and gentlemen, I think I’m watching too much Oprah because that there (what I just said) was an “Aha Moment”. 🙂

Very early, we got Kuba on an Applied Behavior Analysis (ABA) Program, in which I got some training. The first time I sat down and did therapy with him – I cried like a baby! It was debatable who needed the therapy most – But even then I felt like I had to do it all… A sort of “June-ICanDoItBest-Cleaver”. I wanted to be everything to everyone and I couldn’t and it became unbearable because I was always feeling guilty. I decided I couldn’t beat myself up anymore. I did my best and refused to feel guilty about being able to do every single thing.

We didn’t wake up one day and said… “Ok. We accept this”. Our acceptance happened over time. Strangely enough, and I’ve spoken about this before – We never questioned our son’s diagnosis. As a matter of fact we were beginning to raise our suspicion of autism with his pediatrician who at the time told us that we had nothing to worry about – But you know that gut-feeling, these days I call it momtuition, that tell you all isn’t what it seems. So as heartbreaking as the diagnosis was we knew we had two options; (1) Do nothing (2) Help our son every way we can. By the way, just to be clear… Acceptance is not the goal. The goal is to do everything within your power to, as Kuba’s dad says all the time, give your child/ren the best shot at being the best person they can be. Not your dream-best, or what they say in the books best, but his best.

I once heard a doctor say that loving your child does not make you an expert and he’s absolutely right. It doesn’t. But you know your child better than anyone else. So here’s some advice… Get ready for the “deep” stuff… You seek out help for your child because you cannot do it alone. However, I think if someone wants to claim the title of being an expert then they should know that as vast as their expertise is, it is still limited and that only in combination with other experts does the label of expertise reach its full potential. So in this case it’s either all of us are experts or none of us are. So when you talk, you talk as a parent, not as a scientist – A parent who is on call 24/7 – A parent who has had to come up with strategies that work for your child in real-time and not at your next appointment or the next day at school. Don’t get me wrong. I wouldn’t want to be without these professionals but all “heads” (of the people on your care-team) must be able to come through the door. Don’t you think?

So there you have it… How I’ve gotten to this place. Mind you, I still have moments of sadness – like now as I’m writing this piece, and I still sometimes worry about Kuba’s future but I’ve come a long long way though, especially mentally. I’ve gotten over my why-me, poor-kid complex – And most of all I have a happy kid who brings me a lot of joy each day.

My name is Salma Crump and I’m the mother of Kuba, a nine year old boy who was diagnosed with autism at 3 – I’m a blogger, see what else I’ve said here: www.momtuition.wordpress.com  and I’m co-founder of the Special Needs Education lobby group ABILITY. Today is Autism Awareness Day but we’re taking the entire month of April. This is the first of a five-part feature (every Monday) that will focus on Autism.

If you have any words of advice to add or questions to ask please do it here or send an email to: salma.crump@gmail.com or the Editor at The Daily Observer at: editor@antiguaobserver.com.

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