After posting Gryffin’s 6-year-old video update the other night, I received this email today. I know that this Mum speaks for so many others, but the honesty is incredible (and thank you x):
I just want to thank you for sharing Gryffin’s video. I sat mesmerised, I have never seen a 6 year old child with DS come even close to such amazing speech, and I’m not talking parroting sounds, he has real conversations with imagination, something that is just missing in most kids with DS. I watched with my mouth wide open in utter adoration.
My 5 year old son has DS and I have been working hard to try and give him the best possible start in life too, and your Video was very motivating.
However, I also found your video quite confronting and I actually panic when I watch it (around 4 times now), you see there are times when I am doing my ND (Neurodevelopmental)* activities and I’m crawling around the floor with my son and I try to direct him and he just doesn’t listen and I think “what’s the point? Is it going to work? Am I kidding myself?”, my knees hurt, my son isn’t listening to me, ohh look – I then see some fluff on the floorboards and start vacuuming.
I always have good intentions, I write the programs up, I try to do too much and then I give up weeks later, which always follows with periods of guilt. There are some days that I wish I never read your book! (Please don’t be offended, but the guilt eats me up).
Do you know what? I don’t think I have your boundless energy and motivation, so days go by, then years (Crap- yes years) disappear and I have done very little. Because I convince myself that what you do makes no difference. I find I am always making excuses for Gryffin’s success, maybe he was born bright, maybe he has mosaic, maybe he doesn’t suffer health issues like my son does, it’s different for my son, you were the lucky one, my kid is always sick!
I guess I always knew deep down that I was wrong and I needed to keep going. You have shown that the work does pay off and it is ok to have such high expectations, as Gryffin is evidence that they can be met!
It was actually my husband that made me accept the truth. I called him over to watch your video, like I do with hundreds of other things I see on DS. He usually watches impatiently- trying to break free from my time consuming demands, but this time he sat down and watched, and smiled, and HOPED! (I’m crying as I type this) He said “Right let’s get the ND* up and running again, Chris is going to be like Gryffin”.
Whilst I know I can never do what you have done, I can try and do more of what you have done, even if it’s only 50 or 60% more. So I guess I’m writing to ask for your advice on what we should do now, I realise you are probably very busy and this letter is very long, but any advice would be deeply appreciated. ~ Anon
In reply, I have to say, first – I TOTALLY UNDERSTAND THE OVERWHELM!
Gryffin does not have Mosaic DS – as much as I wished he did at the start. Unlike some others’ suspicions, he is not secretly taking smart drugs (!) – what you see is what you get with us! (as you can probably tell from the condition of my house in some of the videos I post!)
If I could offer just a few pieces of advice, I’ll tell you this.
1. Take a deep breath, knowing that you can handle what lies ahead (honestly, you can.)
2. Hold your child’s hands in yours, look into his eyes and have ‘the chat’ – speak to him like an equal, like an adult. Tell him that you want to help him to be the best that he can be. That you’ll have to work together to achieve that goal and – if you dare to – ask him if he will help you to help him? I’d be surprised if he doesn’t give you some kind of affirmative answer, even if it’s just a slight smile. (And even if he doesn’t, assume that he is willing. What else can you do?). I had this chat with Gryffin when he first arrived. Joseph – my husband – has been telling Gryffin since he was very small, that he ‘will grow up to be big and strong, fit and fast, healthy and very very smart!’ – this is like their bedtime ritual with lots of smiles and a happy drifting off to sleep.
3. Add a supplement. Is he taking a multi-vitamin? Probiotic? If not, add one of these and build from there.
4. Go back to your ND program and start with just one thing on your to-do list each day – and do it everyday.
And lastly, consider doing the IAHP parent course coming up in Melbourne this June (and in other parts of the world too). (For the record, I have no financial interest in this course, but it will help you – and your son.)
I know it’s hard, believe me! I’ve had my crappy days (you may have read this post from May 2011?!) But the results are there to be had – for all our kids.
Thanks so much for your refreshing honesty. Onward and Upward xx
*Neurodevelopment (ND) is a phrase describing neurological programs based on IAHP’s therapy method which trains parents to help their own children to optimise their development.