Advocate

According to the online version of the Collins English Dictionary the word advocate can be either

verb       to support or recommend publicly; plead for or speak in favour of
or
noun   
a person who upholds or defends a cause; supporter
a person who intercedes on behalf of another
a person who pleads his client's cause in a court of law 

For those of us dealing with 22q11.2 DS I am sure we all have examples of where both versions of the word have applied to us.

Medical Advocate

We have found on several occasions when accessing medical service that we have needed to act as an advocate for the 22q cause. Often this has arisen when dealing with medical professionals who are not familiar with the condition and we have been called upon to provide information about 22q.

On other occasions we have been the party checking that none of our regular appointments get missed and that all the test results are received. We are also the party finding out about suitable treatments and pushing for them to be given to our child. Take our recent example of Sarah's sleep problems which I wrote about in my blog "The Miracle of Melatonin".  It was through The22Crew and contacts with other parents that we became aware that sleep issues were a common problem and that melatonin could be an effective treatment in some cases.

Education Advocate

Schooling is another area where our services as an advocate for the 22q cause is required.  Colin Reilly from The School of Education, University College Dublin recently undertook a study to examine parents' and teachers' views on education provision.

A couple of key findings from the survey were that only 40% of teachers consider themselves to be knowledgeable about 22q and that 67% of teachers surveyed thought that the student's family was the best source of information on the condition.

Each year we have put together an information package for Sarah's teachers and support worker about 22q and suitable education strategies using the information available on The22Crew website http://www.22crew.org/education 

Our advocacy skills are severely tested when dealing with the local education authority to get an appropriate Statement of Special Educational Needs (equivalent to IEP in the US). Each year we have made sure that we submit a detailed report as part of the review process not only to express our view of Sarah's progress but also to educate the authorities on the issues with learning that people with 22q can experience.

I think we all know that our role as advocate is not going to go away and at the end of the day we know that if we don't spread the word about 22q or push for the support that our families require then no one else will. To enable us to fulfil this role I believe that it is essential for us all to learn as much as we can about the condition and to share this information with the 22q community.