Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs.
Welcome Ann to Diary of an Imperfect Mum.
Ann is a full time mum and part time college teacher and writer at Rainbows are too beautiful. She is an active member of her local SEND community and lives somewhere around London / South East England with hubby and kids Anthony (8), David (5) and Jane (3).
1. How many children do you have and what conditions do your children have if any?
We have three gorgeous kids. Anthony is eight and was diagnosed with Autistic Spectrum Disorder (ASD) around the age of four. Since his initial diagnosis, he has also been diagnosed with Hypermobility, Anxiety and Attention Deficit Hyperactivity Disorder (ADHD), Sensory Processing Disorder and Dyspraxia.
David is five years old and was diagnosed with ASD before he was four. He also has hypermobility although we’ve never had it officially diagnosed.
Our youngest is Jane. She is three years old and appears to be an aspiring socialite. However, it’s very common for girls with ASD to be able to mask their symptoms – so we are watching her closely.
2. How did you feel when you found out that your first child had ASD?
Emotional as one would expect, but not over whelmed by any one emotion in particular. I never really went through a ‘grieving’ like I know some do. Anthony was still Anthony, but now he had a diagnosis I could help him do and be whatever he wanted to do or be.
I was relieved our suspicions about him were correct as I thought we could now help him. However coming away from his diagnosis meeting I was left wondering why I’d only been given a few leaflets and referrals. I think this is quite common, I see a lot of people asking ‘What now?’ after they have a diagnosis.
Don’t get me wrong, the diagnosis of our kids was vital in their progress but I didn’t realise how much at the time.
3. Where did you first turn for help?
The Internet. My first instinct was to help myself beyond the few leaflets I’d been given. I wanted to know what it was like to be Anthony so I could understand him and be what he needed me to be. One day that would be an occupational therapist, another day it would be an interpreter and every day, at least initially, I was his chief speech and language therapist. I remember, the speech and language therapist brought out a book at his first session. So I bought the book off Amazon and read it cover to cover over the next two nights.
4. When did you notice your 2nd Child had difficulties?
Anthony and David presented so differently in their younger years we didn’t start suspecting David might be on the spectrum until he was over two years old. Despite appearing to very happy and social, David didn’t start talking and is still pretty much pre-verbal. I remember being heavily pregnant with Jane and turning to my hubby in bed and saying, “I think David may be more challenging than Anthony.” Mother’s instincts are often right. I’m still a speech and language therapist every day ;-)
5. What advice would you give a parent who has more than one child with additional needs?
It’s probably no different to the parents of any children, to love them each as their own wonderful individual selves. To help them with their personal difficulties. And maybe more than for other parents, to not be afraid to ask for help or take it when offered. Initially it felt like there was no-one who could really help us with anything. It took me a while to see what help there was, even if it was just a friendly ear, and to take that opportunity when it was there.
6. What are the biggest challenges facing your children and your family?
This seems to change frequently. Fairly recently going out as a family was hard work. The boys were both too big to handle and David in particular was a loose cannon. Now David can follow some instructions, in particular he is happy to hold hands when going out it’s easier. Now we face the standard lack of understanding that can exist in the places we go… so it still seems hard to get out.
7. What has been the greatest help for you, your children and your family in overcoming these challenges?
Definitely friends and family. I have different friends to those I thought I might have. I thought when the kids started school that I’d make friends with the other mums there but that was difficult to cultivate. Instead I found friends through disabled parents and playgroups. I’m now a trustee / committee member for local SEN charities and groups several of which were there for us – as a family – along our continuing journey.
Family have always been supportive, doing all they can from where they are to assist the kids and us as parents, and a couple. It can be hard to get time together as just a couple when you have lots of kids, with lots of specialist needs.
8. What has surprised you the most about parenting from a different perspective?
I think very little about what we aren’t doing because it’s difficult or what’s not being achieved because of the kids difficulties. I would have thought I would dwell on these more but I don’t. I see beauty in all my kids, those with and without difficulties. I’m as excited when Jane first said ‘I love you’ at two years old as I was when David first said it, in his own special way, at five.
Perhaps my idea of achievement has changed and possibly what being happy is too.
9. What’s the main bit of/the best advice you’d give another parent who has more than one child with difficulties.
I cannot advocate taking support when it is offered enough. It’s so important for the whole family. There are groups and charities that can offer this – particularly if you look up our child’s condition’s charities. There is also a wonderful lot of special needs bloggers who will laugh and cry with you over their laptop.
And again, treat each one and look upon each for their uniqueness. Being unique is something society seems to treasure when it’s been chosen but it’s equally as special when it just comes along that way.
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
I’ve learned so much about therapies, about how councils work, about special education needs and the list goes on. I guess that’s why I started putting it down in a blog.
I’ve probably learnt more about myself from my kids than I would have thought. I wish I’d discovered I was more organised as I’m drowning in drawers of additional needs paperwork, but thank fully I’m able to find things when I need to! But I have learned I can be more patient than I thought and I was and fiercer than I thought I could be when it’s needed. There is no one way to be… and that’s a good thing… most of the time.
“Rainbows are too beautiful,” said Anthony, “I just can’t look at them.”
‘Rainbows are too beautiful’ describes so much about how Ann’s family sees and interacts with the world a bit differently. On her blog, Ann shares stories, information and opinion as a mum parenting three autistic and neuro-typical kids – raising awareness and offering some support along the way.