Posts Tagged ‘parents’

‘Tis the Season, 2011

December 26, 2011 6 comments

This “In Their Own Words” is by Shelley Stolaroff Segal. Segal is a playwright, performer, and essayist living in Greensboro, North Carolina.  Her latest play focused on autism and race and was performed at the Manhattan Repertory Theater and TEDxEast.  Her fourteen-year-old autistic son, Josh, is her divine inspiration, as is his equally divine twin sister, Jordan.

It’s that time of year again.  Time to reflect on the past twelve months and count my blessings. 2011 was a strange ride, full of jarring twists and turns. I’ve lost a few marbles but added a dress size. My son, Josh, a low-functioning but charming fifteen-year-old, is still in the throes of puberty. (Geez, will it ever end?) Despite some cognitive regression, his social skills have improved greatly. He knows more restaurant managers than I do. Good thing, because I’m a lousy cook. So, I will give thanks for my son’s growing sociability, his love of school and family, and recognize a few more of the year’s blessings:

*I’m grateful that Josh likes the cafeteria as much as I do. We try to arrive around 4:00 to miss the dinner rush.

*I’m grateful that Josh’s limited vocabulary is becoming more age-appropriate.  Gus, one of his longtime aides, has taught him how to say, “I want to drink beer at Hooters.” It doesn’t matter that Josh doesn’t understand what he’s saying. Gus is still delighted.

*I’m grateful that only chemicals give me headaches instead of the pubescent odors that assault my nose every day.

*I’m grateful for Josh’s laugh.

*I’m grateful–thrilled actually—that my son and his twin sister, Jordan, are going to the same school for the first time in their lives. Schlepping them to and fro every day is a pleasure. Really.  I tear up sometimes when I watch them walk in together.  Jordan hugs her brother goodbye and shakes hands with his classmates before beating the bell to her own class.

*I’m grateful that I don’t pull my hair out over Josh’s seizures.  It falls out painlessly.

*I’m grateful that we haven’t given up on Josh’s speech.

*I’m grateful that Josh is obsessed with “sook.”  With school.  Every morning he shouts the word deliriously in the shower, and at the table, and from the rooftops. “SOOK!  SOOK!!”  It’s only a problem on weekends and holidays.

*I’m grateful that the thickening hair on Josh’s legs is finally covering his bug bites.

*I’m grateful that homecoming weekend was more sweet than bitter.  I allowed myself to cry only for a minute when nobody was around.  I always thought my twins would be double-dating in high school. But I was thrilled for my daughter, who looked radiant, thrilled about her very sweet boyfriend, and thrilled that my son didn’t care one bit about what he was supposedly missing.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Advice for Asking Questions and Advocating for Your Child

December 30, 2010 4 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

YOU are your child’s best advocate. YOU are their voice when they need it. YOU know your child best. It’s not about them; it’s about your child. –Marisa

The best advocator and educator for your child is you. So educate yourself on different forms of therapy and treatments. Find a great pediatrician. And learn to laugh and enjoy the journey, that little person needs you. And love them for who they are…an awesome child who just happens to have Autism. –Deanna

Believe – in yourself, in your child, and most of all in the bond you share. –Keith

Early Intervention is Key.  The sooner your child receives therapy, the better chances the child has to grow. Check out the public schools to find out which has the best special education program and do everything in your power to go to that school. –Caroline

People with Autism do not plateau in their learning abilities.  They will keep growing and learning with time, patience, and consistency. That is what I have found in my son. –Doreen

Know your school system and the services that are available for you and your child.  Fight for your child; do not let the school system bully you or your child.  Insist that your child be allowed to become the best that they can be. -Linda

Do NOT assume that school personnel know more than you do about your child or autism.  I am a special education teacher whose certification program only briefly covered children with autism.  There is no state teaching license, in Wisconsin, for the area of autism.  Visit your child’s school, unannounced, and observe the programming and interaction between students and staff, students and students.  Many times special education aides are the staff members responsible for your child’s day-to-day functioning.  Do not overlook them – they are a vital piece to your child’s success. –Sheryl

Remember, you’re not alone.  There are many untapped resources to help fund your child’s road to recovery.  Know your rights, and the rights of your child when looking for these State, Federal and School District funded programs. -Ian

Have lots of mirrors and practice social situations BEFORE you go.  One step beyond social stories…don’t script them…’improv’ any new situations and talk about possible feelings and reactions.  Practice making your body match your feelings AND practice hiding your feelings when necessary. –Mary

I got the best advice to embrace my son’s autism.  Never give up, and embrace it along the way. –Kristi

Stop trying to fix them, they aren’t broke. –Ruth

You will hear so many theories and receive so many suggestions about therapies that you MUST try. Proceed with an open mind. Proceed with caution. Look for objective evidence (data, proof) of claims that treatments are effective. But above all, do what works for your child and your family. –Kelley

I wish I’d known colic is not “normal.”  Although food intolerances are not the source of our son’s problems, having stomach aches and headaches certainly made it much more difficult for him to focus on our world.  If your baby/toddler has stomach problems or cries for “no reason”, have him/her checked for food intolerances, and if you are breast feeding, eliminate the major problem foods from your diet (milk and gluten are a good starting point) to see if it helps.  It may have a major effect on your child’s behavior. -Deniz

Be patient, go with the flow, seek the best therapy you can find, and love them through it all. –Sharon

Following the GF/CF diet has cleared up my son’s cloudiness….he became much more interactive with his environment and family.  It is important to be 100% all day every day to get results!  Set a time frame and gently ease into the diet so your child does not feel penalized, there are a lot of great recipes available and people to support you! Remember to keep carbohydrate intake low if you are GF/CF! –Dens

Don’t blame yourself. –Jon

Advice for Maintaining Relationships and Staying Connected

December 28, 2010 2 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

Having a child on the spectrum can feel isolating enough.  Don’t be afraid to tell people about your child.  Everybody knows someone touched by Autism or Asperger’s! You never know how you might help someone else by simply opening the door. -Heather

As a sibling of someone with autism, the best advice that I could give is to teach the other children or child in your family what autism is and how to be the best support and role model for their sibling with the diagnosis. Ultimately, they can be a wonderful teacher, peer model and friend to your child as they grow up into adulthood and contribute to keeping the family strong through this journey. – Elif

Being a sibling to an Autistic child, especially being the only and oldest (such as myself) I recognize the importance of family relationships. Be honest and involve siblings with all decisions. Offer lots of private time because they do lose out on experiences when bringing an Autistic child to places such as Disney or even having friends over are too stressful. Be upfront about the responsibilities we will someday face but be cautious. I realized at 12 that someday my parents will be gone but small steps ease this realization. An open dialogue and allowing siblings to have a passion or hobby they can be immersed in is helpful. You may sense resentment at times and things may be said but never doubt that we love our siblings and will do anything for them. –Natalie

When our grandson comes to us after school feeling fried and close to a meltdown, I take him aside in a peaceful spot and just hug and hold him and let him know how much I love him. He comes around quickly and is happy again. –Donna

These children require a lot of attention every day but with the help of their parents, schools and professionals they can have a successful life. We are all in it together. –Rebecca

Remember to take time for yourself. A happy, healthy mom or dad is so important for any child, especially one on the spectrum. It’s usually you and your kids against the world, so take care of yourself, so you can take care of them. –Sarah

Don’t treat it like the end of the world, because it is not! It will always get better and easier with the help of family and friends. –Erin

It is not the end of the world. As our world was turned upside down I remember asking myself “why” “why us” where did we go wrong, what could we have done different. The truth of the matter is there is nothing that we could have done different; there is nothing we could have done to prevent this from happening to our daughter. Get together with parents in your community with ASD children and talk, cry, laugh share stores find someone on line that you can connect with DO NOT TRY TO DO IT ALL ALONE!!! –Katie

Be a Beta Tester for AutismTrack

June 18, 2010 2 comments

HandHold Adaptive® (the company behind iPrompts®) is seeking testers for its new, yet-to-be-released application, tentatively called AutismTrack.

The application runs on the iPhone, iPod Touch and iPad, and is designed to be a powerful new journaling tool for parents of those with autism. After setting up a profile for an individual with autism, parents (or other caregivers) can easily track the individual’s behaviors on a daily basis. Daily interventions, like diets, supplements, therapies and medicines may also be tracked. With Apple’s simple, touch-screen interface, it takes only seconds, and you can do it from wherever you’d like.

If you are a parent of a child on the autism spectrum, and are interested in testing AutismTrack, please send an e-mail to that includes the following information:
1. Your first and last name
2. Your device type (either an iPhone or iPod Touch is required to be part of the trial)
3. Your phone number
4. Your child’s age
5. On a scale from 1 to 10 (10 being a typical peer in his or her age group), how would you describe the developmental level of your child?
6. On a scale from 1 to 10 (10 being “most active”), how active are you in experimenting with diets, supplements, medicines and therapies?
For more information about the application and being a beta tester, please click here.
Read a post about iPrompts, another one of HandHold Adaptives applications.
We are very excited about the launch of this product and hope that you will help HandHold Adaptive make AutismTrack the best application it can be to help your child.

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