Recently, I wrote a blog about the best parenting advice that friends had been given before or as soon as they became parents for the first time. There weren’t any big surprises in there (although there was a plug for Tena ladies I didn’t see coming!) but as soon as I had written it I wondered if the advice we are given would differ if the baby that had just arrived into the world had been born with disabilities, additional needs or in my case, half a face (the correct name is Goldenhar syndrome but it doesn’t mean anything unless I explain it and that’s the quickest way) Yes they are still just a baby but enjoying those simple moments that so many new parents enjoy and take for granted can be tough when you are digesting life changing news.
So, I took to an incredible group of SEND (special educational needs and disabilities) parents who are rapidly becoming my tribe and I asked them what advice they had been given.
For me personally, I don’t remember much of the advice I was given at the start as I was still processing the news of Harrys syndrome. I do remember that while my mum offered practical advice, another SEND mum who I met told me to always trust my instinct and that when professionals were talking about things you were uncomfortable with, to speak up and be the voice for the baby you would know better than anyone in the world. Battle words from a veteran to a novice in the field. It felt overwhelming and scary at first but I realise now that she was right. I have had to fight for the basic of rights for my son (such as his transport to school) and have argued with consultants who have seen my son as a ‘project’ to be worked on (Not at Alder Hey may I add where our care has been fantastic!) It turns out that my experience, is a pretty common one amongst other SEND parents but it’s not all doom and gloom. Some of the advice given to them, even made me think, 12 years into my journey. There is no expiry date on good, helpful words. Here are a few of them that were given to other parents through the years.
“Your child will surprise you and no-one can predict the future” And my children have definitely surprised me! Donna
“Remember, that Isla is the same child you had yesterday, she’s still Isla, that’s not changed and her diagnosis doesn’t change that either” Gemma. Sally was told something similar too, “remember, he’s the same gorgeous boy as he was last week”
As with parenting advice for ‘typical’ babies, ‘trust yourself’ was common for us too but more than just trusting that you know best for your baby when they are crying or moving through their development stages, for parents of SEND babies it’s also about trusting that YOU know what’s best in terms of their diagnosis and treatments. Emma was told “Don’t always believe the health professionals, they are not always right” and sadly she knows this first hand. In time, we become the expert on our own children.
Accepting our children’s individuality was a popular topic for advice too with Jeanette being told that all children with ASD (Autism Spectrum Disorder) are different even if they show similar traits. Both Miriam and Katie were told not to compare their children with others especially when it came to development and hitting milestones and that they would develop in their own way at their own time. I think that’s one of the hardest things not to do but one of the most important. I saw that so much with my boys being twins. As Oliver cruised up the arch of ‘typical development’ in his health visitor red book, Harry struggled to even stay on the scale which I came to loathe. Worrying about it changed nothing and just zapped me of energy that was needed elsewhere.
Much of the advice given to SEND parents is the same as other parents. We too are told to ‘sleep when they sleep’ but quite frankly when you have a baby who becomes a toddler then a child who just doesn’t need sleep to function that can leave you physically and mentally exhausted. Self care tips coming soon on how to help if sleep is a luxury! ‘Enjoy the journey’ is another one that’s true but I have to say it’s a tougher journey when you keep hitting dead ends, the sat nav breaks and the child in the back seat is screaming holy hell and thrutching like a bucking bronco because you’re reversing (just me then?) but you know what, we get there in the end and the hardest journeys are always the most satisfying ones.
Finally, Jo shared a piece of advice that I love for us all. For our children and for ourselves. She said “always add ‘now’ on the end. ‘My Son can’t do X Y and Z now’ “
Now doesn’t mean forever and as much as we can sometimes feel stuck on the sleep deprived journey of a thousand diversions none of the trials and trauma last.
Just the love.