With over four years of special needs parenting under my belt, and I have a whole new understanding of the term “advocacy”.
As a mom, I naturally want to protect, nurture and walk alongside my child, in every aspect of life.
I speak up for her if she’s being dealt with unfairly and will fight her corner til the end.
They often have additional care needs, communication needs, educational needs, the list goes on.
They really are so vulnerable.
This has become clear to me when I look at my sweet little girl who is deafblind and does not talk.
We can be the most powerful voice for children with special needs - we really are their best advocates.
I found a concise description of the process of advocacy at www.seap.org.uk which I think applies well to special needs parenting:
Advocacy is a process of supporting and enabling people to express their views and concerns, access information and services and defend and promote their rights and responsibilities.
It brings back many memories, both good and bad. She’s taught me so much since making her early entrance into the world, at just 25 weeks gestation.
I would have never thought before becoming her mom that I would be such a strong advocate for my child.
I understood this as my professional responsibility as a nurse, for my patients.
But now I’ve experienced how essential the role of advocate is as a special needs mama.
As her mother, how do I help her express her views and concerns?
Well, I’ve learnt that she does not like people to touch her unexpectedly, or to grab/control her hands when doing sign language or trying to show her something. Being deafblind she is particularly tactilely defensive.
So I make people aware of her preferences, likes and dislikes.
During an interaction, if someone is doing something that makes her uncomfortable, I’ll speak up for her.
She also doesn’t have a very loud cry, so often people miss if she is distressed or sad.
I couldn’t count the number of times I’ve been told “Oh, I didn’t realise she was crying / upset”.
As her mother, how do I help her to access information and services? This is a big one. We have relied very much on the support of specialist teachers and support professionals who have experience in working with children who are deafblind and their specific learning and communication needs.
Brielle also has other significant delays, particularly around her physical development and eating.
I feel that special needs parents are particularly good at accessing products and services to benefit their little ones.
We want to get our hands on anything and everything that will help our child to develop or increase their quality of life!
That’s one of the reasons I love being involved in the Firefly Garden – check it out for advice, blogs, new products, and much more at: http://community.fireflyfriends.com/
Furthermore, as her mother, how do I defend and promote her rights?
I definitely have a strong ‘mama-bear instinct’ when it comes to standing up for Brielle’s rights.
More so with her than with my older typically-developing girls. I think it’s because she’s much more vulnerable, needing assistance in all areas of life.
She has a right to a free and appropriate education, with all the supports and therapies she needs to access the curriculum and to make progress.
She has a right to be involved in the community, with her family and friends, without discrimination for her disabilities.
She has a right to use and get enjoyment from public areas in her adaptive equipment.
When these rights have not been upheld, I speak up and get things sorted out.
Because above all, my daughter has a right to be happy, to be loved and to live life to the full.
And I will be her voice.
Did you receive adequate support and information when you received your child's diagnosis?