Tuesday, July 16, 2013
Friday, July 12, 2013
|The route our son walked today. Alone.|
Friday, December 14, 2012
In the long term I fear this has greater ramifications for the special needs community and my own special needs children if new reports and media outlets do not do their part to use this unspeakable tragedy as a teachable moment.
Below is the statement from the Autistic Self Advocacy Network (ASAN) on this very topic:
ASAN Statement on Media Reports Regarding Newtown, CT Shooting
Monday, November 5, 2012
For me this time it was all about work. I've fought very admittedly about issues of agencies telling us that we must be present for all therapies and in defense of other families as well. No one should feel like they must give up their livelihood or financial well being because they have a child with disabilities.
In all my professional life, I've worked for supportive and understanding organizations. My children have never been an excuse for not showing up, doing my job or doing the best I knew how. The last 3 years has been spent in the realm of Human Resources (HR), and working with these teams very closely. To say it has been eye opening would be an understatement - but a learning experience nonetheless.
I came into my most recent job with high hopes and expectations and with some concessions as a family that there would be more demands, and travel, but more flexibility and time working from home as well. The past 18 months has gone well, or so I had thought until last week when I was approached my my HR representative about my excessive PTO and Performance. Earlier this year our firm implemented an "Unlimited PTO" policy, which sounded great.
As I discussed the concerns with both my HR rep and Manager, the issues at hand and the time off were addressed, and I attempted to explain at some level these partial days off that were directly related to IEP meetings, therapy meetings, doctors appointments, and the like I was flatly met with the response of:
"We all have our cross to bear. I'm sure you don't have any more responsibilities that Sally* does".
*Name changed - another parent of 2 typical children
Upon hearing this I froze. I've openly shared within the firm from the moment I interviewed that I have 4 children, 2 of which have special needs. Our own CEO and his wife have a child with autism, and yet I was hearing that there was nothing that made me any different from anyone else who was a parent or an employee.
This has been devastating to me as well as eye opening. I had a false belief that there was some level of understanding of the demands of this part of my life. Everyday is an uphill battle to ensure scheduling of therapy, services, payments and progress in our children and our family. Not to mention the long term emotional and psychological demands of having children with special needs and the elevated levels of stress that we as parents harbor.
As for my personal situation - I choose to work - I like to work. The reason I sought a masters degree was not so I could sit home, but to have a career. Just like I don't want to be judged for working by agencies that feel I should be home with my child, I do not want to judged or made to feel guilty for the time necessary to take care of my children. This scenario has only added to my stress levels and has led to the realization that so many parents in this situation still sadly face. I know that we as a family are not alone in this battle, and many families face these challenges everyday - but still so much must be done to create awareness.
ADA protects us as parents as well. Read more at Wright's Law.
Thursday, September 27, 2012
- Seek out providers who's values match up to your own
- Ensure that there is an established communication with the entire team
- Be sure you are key resource on scheduling and prioritizing the therapy
- Set ground rules for expectations of your children and your household
Decide how you feel about the assignments of interventionists and how they will be introduced to you and your child. Don't be afraid to speak up about whether you prefer a trial period, and even when you don't think a particular interventionist might not be a right fit. Ensuring that the right people are working with you and your child is a critical step.
There are many choices in therapy teams, and they are not one size fits all. Whether you are paying for the services yourself directly, doesn't mean you shouldn't make sure you get the best possible service. After-all, you and your family must live with the results for years to come - be a good consumer.
Tuesday, July 26, 2011
Monday, December 6, 2010
This year, we cautiously decided it was time and after consulting with our oldest son who was turning 10 we opted to put him on a regular U10 team here in AYSO Region 68. I have to admit we were scared, worried he wouldn’t fit in with the other boys, or play well enough – but after watching a practice and the first game I came to realize the importance of his place on the team. It wasn’t to be the best player; it was to teach his teammates what it means to pick up the slack for a weaker team member.
Our son got everything out of this season AYSO “Region 68 enthusiastically supports” from its website –
- Registration was open to him
- He played every game, was on time and enthusiastic
- He was on a balanced team, and had many talented and supportive teammates
- He received positive coaching
- He developed skills he did not have prior to playing this season
The parents and kids on the team were highly supportive, although I don’t know that all of them knew of my son’s official diagnosis of autism – all were supportive of him none the less. The most important point of all - my son enjoyed himself, and being part of the team.
His team did well, so well in fact despite my son’s deficits and skills on the field went undefeated until the championship game and were even invited to the Regional playoffs. It was at this point we saw our only unfortunate behavior – when his assistant coach suggested he be ‘late’ or ‘sick’ so his team members would have a better chance of winning.
As Muhammed Ali said – “The will must be stronger than the skill.”
Thanks to all in our community that truly believe in character above shelves of trophies.