Today is a notable date - 22/11/22.
Several years ago, November was chosen as the month to promote awareness of 22q11.2 Deletion Syndrome, with the 22nd being the date to actively highlight the condition. I can't let today go by without a post in my blog. We'll never have a date more closely representing 22qDS. On this memorable date, it seemed fitting to me to celebrate the condition.
Whilst running our charity (The 22Crew), we were regularly contacted by parents whose child had just been diagnosed with the condition. Even as recently as ten years ago, much of the information highlighted the challenges these families were likely to face. As a charity, we were always determined to showcase the possibilities and opportunities rather than dwell on the difficulties. A deliberate act on our part, to not only help ourselves cope but also to offer hope to families often still reeling from the shock of their world being changed forever.
Parents are naturally proud of their offsprings' achievements and many love to share their children's successes on social media. Examples often include; examinations passed, sporting events won, teams joined, awards received; all benchmarked against recognisable standards. The multitude of symptoms associated with 22q Deletion Syndrome imposes various limitations on individuals so they may not be able to achieve in the same way as their typically developing peers. Although their successes may need reframing, it doesn't mean that they are less worthy of recognition. However pleased you are for other people's children, it can be difficult knowing that you won't be announcing similar successes for your non-typically developing child. Most of us have incredible families and friends who love our children unconditionally but sometimes you just want to be like everyone else.
Around 2013 / 2014, The 22Crew created the hashtag #22qCan-Do to encourage the whole 22q community to recognise, celebrate and support the achievements of those affected by 22qDS. To give families a sense of being like everyone else but in a forum that understands the context.
Generally individuals with 22qDS achieve milestones later than those unaffected by the condition, however there are always exceptions, and we're proud to know some incredibly talented people with 22qDS. Talents right across the board from the arts and music to academic excellence and successes in independent living and solid careers.
We believe that it's important to recognise achievement however small the steps might be. What could be considered 'small' to some, will be an incredible achievement for others and several small steps will eventually add up to one big one.
We also introduced 'Friday Achievements' for our members and had a dedicated page on our website to capture a broad range of successes. In addition to public recognition for the individual, our aim was to give actual examples to families who had just received their diagnosis. It was extremely popular.
High self-esteem is vital to give any individual confidence and belief in themselves which in turn maintains good mental health. With an increased incidence of poor mental health for those with 22qDS our charity was keen to play a part in lifting the spirits of the whole family.
Our key messages were:
- diagnosis doesn't predict potential
- success can take many forms
Even though our charity no longer exists; we're delighted that so many in the 22qDS community around the world still regularly use the phrase #22qCan-Do when reporting updates.
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| Some of Harrison's achievements over the years. Some obvious, others less so |
