This weekend, March 22, marks the 10th anniversary of the San Diego Race for Autism. All of the proceeds from the race stay locally in San Diego benefiting programs that help those with autism along with outreach and education initiatives to classrooms. The race is put on by the National Foundation for Autism Research (NFAR) and will be attended by thousands of people, some on the autism spectrum, some with children on the spectrum and others to show support for the autism community. The race will start at 7 a.m. and go to 11 a.m. and will be at the west side of Sixth Ave and Laurel Street in San Diego, next to Balboa Park. There is a 5k superhero race/walk and a 1 mile walk. For more information about the San Diego Race for Autism go to www.raceforautism.org/
I wanted to speak to a family who was participating in this year’s race for the first time. I wanted to know what it was like to have a child on the autism spectrum along with what this family was looking forward to about this year’s race and how their life has changed since autism was diagnosed. So much of the time this community’s stories are told by those who are not themselves on the spectrum; it is extremely important that we allow them to tell their version of what autism is and what it is like, as well as how autism has changed their lives.
It is very fitting that this year’s theme is superheroes as it is the parents and those who are autistic who the true superheroes are.
These days, autism has touched most of our lives in some way or another and it is important that everyone takes the time to understand autism and to educate themselves. With a lot of media coverage being given to autism, it is important to note that everyone’s experiences, level of severity and take on their autism is completely different. There is a saying within the autism community: “If you have met one person with autism, you have met one person with autism.” Everyone is unique and so are their stories, hence the use of the word “spectrum” and I urge everyone who can make it out to the race this weekend to do so.
The Kramer family wanted to share their story in the hope that people better understand autism and treat those on the autism spectrum with more respect and dignity. This year will be their first race and for the first time they will be around thousands of other families just like theirs. Tina Kramer and her husband first met in high school and then became reacquainted in 2004 through a mutual friend and made their relationship official in November 2005. They found out Tina was pregnant at the end of April 2010 and their little girl Sofia Montalvo is now 3. When asked how she felt about finding out she was pregnant Tina said, “Scared and happy… we had and hadn’t planned for her; we were leaving it in the hands of God to determine the right time. We weren’t sure we were in a position to be ready for a child but we were ecstatic about having a baby!”
Christina MacNeal: When was your daughter diagnosed with autism?
Tina Kramer: I was laid off work in February 2013, right after Sofia’s second birthday. I noticed something wasn’t right; she wasn’t talking and she wasn’t approaching milestones that she should have hit. There were some other signs such as mannerisms that she did. We asked her pediatrician who said there was nothing wrong and that she was just a “late bloomer.” I didn’t agree so we were put in contact with the Regional Center in San Diego and they started the assessment process. It was determined that there was cause to believe Sofia could be autistic around 2 ½ years old and then she was fully diagnosed in January of this year. They don’t do actual diagnosis of autism in children until they are 3 years old.
What was your first reaction?
How do you put into words your first reaction to news like that? I wasn’t shocked. I had prepared myself for the news but as with any parent I was saddened at first and I wondered if it was something I did during my pregnancy. There was a whole gamut of feelings that went through me! I told them I don’t care what the diagnosis is, just get it done and get her whatever help she needs to move forward. The most important thing to me is her chance to succeed and I want every possible opportunity for that to happen!
Where on the spectrum did they place her?
They gave her a diagnosis of mild to moderate autism, high functioning. They removed Asperger’s from the DSM (Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association), so that’s about all they could tell me. We are still going through assessments now with San Diego Unified School District so hopefully they can shed more light on her diagnosis.
How many different therapies does she do?
Sofia currently does ABA (Applied Behavior Analysis) therapy in home four days a week, three hours a day. It encompasses all the therapies she needs right now: speech, occupational and behavioral therapies.
Is she verbal or nonverbal? If nonverbal does she type?
Sofia is verbal with a delay in her communication but with the ABA therapy she has been doing since September 2013 she has come on in leaps and bounds in her communication.
What are the hardest things about autism?
As a parent, the hardest thing is just seeing my daughter not up to par with other children her age. Also, wanting everything best for her and the fear that she could struggle in school, be made fun of or mistreated because of a lack of understanding for what she is going through. Day to day life has its challenges from time to time when she wants to have a meltdown but I don’t see my daughter any different than other children her age for the most part.
What are the best parts about autism?
The best parts about autism … I can’t think of a best thing. I mean I love her and everything about her; she has her quirks and I love them. I think the best thing is that I have learned more patience and tolerance for other people’s lack of knowledge.
Does she have specific interests yet, and/or things that she loves?
She loves anything KPBS! No specific interests other than Elmo and all those loveable Sesame Street characters. She has started to like different animals; she enjoys the Zoo and Sea World and she loves going to the beach. Sofia is a very active child who loves everything outdoors!
How as a family has autism changed your lives?
I would say that it has made our family stronger and closer. We have large families on both sides and it has brought us closer and built a large support system for us and Sofia. Other than that, there are obvious changes such as having therapy four days a week and making accommodations for assessments and such. It’s hard to say because I don’t feel like it has changed our lives that much, we just roll with the punches and that is our life.
What is the hardest thing about how society views autism?
The hardest thing is the lack of knowledge about Autism Spectrum Disorder (ASD). It is hard when people who don’t know anything about it look at my child when she isn’t listening to me or having a meltdown and assume that it’s bad parenting. The other thing is the view that it’s a bad thing. I tell someone she was diagnosed and they get this sad look, take a deep breath and say, “Oh I am so sorry!” Like I just told them that she has a terminal illness. My response is usually, “Don’t be because I’m not!” Then I use that opportunity to try to inform them a little bit about ASD.
How about how family members view her autism?
We are blessed with a very open and understanding family! They have been amazing through the whole process and they do not view her as any different than if she didn’t have the diagnosis. We have two teachers in the family who deal with children every day; we have extended cousins who were on the spectrum and the whole family has been very supportive. Her grandparents participate in therapy sessions and have accompanied me on various appointments regarding her schooling; they are all very involved in making sure Sofia gets the best of everything! One example of the support we have is we have a team of 16 friends and family walking – all in support and for the love of Sofia!
What do you think the most important things people should know about autism?
It’s not an “illness” – these children are not sick! They have a learning disability; they’re not stupid, they’re not slow and we’re not bad parents! Autism parents struggle everyday with trying to raise their child without needing the additional judgments placed on them by society! Ask questions about it, empower yourself with knowledge because you never know, it could be your niece, nephew, brother or sister! If you’re a parent, don’t be afraid to have your child tested if you think there is something going on. You know your child best and the earlier you find out the better chance your child has!
(There seems to be two different views on autism: One that this is something that needs to be cured thus there is something wrong with an autistic individual or child. The other is support diversity and that society needs to be more informed, open minded and that autism, while challenging, is simply another way of being.)
Can you tell us your thoughts on the two different viewpoints in the autism community and where you stand?
Well, I know there is nothing wrong with my child, there is nothing to be cured and it is not an illness! I would agree wholeheartedly that society needs to be better informed and more open minded. Having a child on the spectrum presents its challenges from time to time but it also presents sweeter rewards at the end of the day. I guess you could say it’s another way of living for my daughter but her world seems to be more fun anyway!
Is this your first Race for Autism?
Yes this is our first year walking but it will not be our last!
Who else will be doing the race with you?
As I mentioned earlier we have 16 people walking: Sofia’s grandparents, aunts, great aunts, cousins and very close family friends. It has been a very overwhelming experience seeing all of the love and support we have!
Why is this race important to you?
It’s important to me to give back to a community that has already given so much to us! Sofia receives services that we can’t afford but without which she wouldn’t be doing anywhere near as well as she is! We raised $1,150 to go back into services in San Diego County, to give other children a chance to thrive and learn how to manage this disability.
Have you raised enough money for the race, yet, if not where can people go to help?
Although we have raised $1,150, it’s never enough and there is always more that can be raised. Anyone who wishes to make a donation can do so before April 5 by using this link: http://nfar.donordrive.com/participant/TinaKramer to donate to our team.
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