Interview with Helen Sui

This week on The Spectrum, we talk to Helen Sui from Parents Place about life as a mother of a child with Autism. Also, Vanessa Kahlon will be speaking at Parent's Place on July 9th.
Enjoy!

(1) Tell us a bit about your support group

Parents Place support group started in October of 2011 by Andjana Pachkova and her husband Martin Herbst. They were looking for a support group that dealt more with the emotional aspects of having a child with ASD. They wanted to find a place where they could share their feelings with other families about the grief they were going through and with the help of a staff member at Parents Place started the group. Today our group still share our ups and downs and families also more than happy to exchange resources/recommendations, a helping hand or a hug.  We meet most every first Wednesday of the month from 6:00pm  to 7:30pm. Being a part of this group has been a great experience. I've learn so much from all these wonderful parents I've met through the years and am amazed by their courage, strength and perseverance. When I see and listen to people like that it is contagious and I want to be a part of that. 

(2) What was the most difficult aspect to accept when your son was diagnosed with ASD? How did you come to terms with the diagnosis?

The most difficult aspect to accept for my  son was that there might be might limitations to my husband's and my dreams and hopes for his future. I think everyone wants the stars and moons for their children's future and when we got the diagnosis, we started to question what is still possible for our son.

My turning point in acceptance  was probably three months after my son's diagnosis—I decided to go to Parents Place's support group meeting. I was feeling lost as to what to do for our son and still on the mend with his diagnosis. I knew I needed to get my act together for our son's sake and going to that meeting was a wake up call I needed. After the meeting I realized my husband and I were not alone, there were other families going through what we were, and being successful in providing great quality of life for their children. I found mentors and wonderful people who understood my feelings and validated them.

(3) When you meet families whose children have been recently diagnosed, have you been surprised by similarities between their journey to accepting the diagnosis?

I feel everyone is unique in their own journey of accepting their child's diagnosis, but perhaps we all go through stages and not always in the same order. Shock/denial, isolation, anger, grief/loss, and acceptance.

(4) What advice would you give to families who are having a hard time coming to terms with an ASD diagnosis? 

The best advice I could give someone is to not be afraid to ask for help. A lot of times families feel they must go it alone, because "no one understands" what you are going through or they are still not ready to share their news. When you go to a support group you meet families going through the same thing or have gone through it, this makes a huge difference. It validates all the feelings you are going through. People listen, understand and offer up ideas/hugs. It's a great community to be a part of and it gives you strength. When you see other families living and succeeding with the similar trials you have, you think to yourself, if they can do it so can I. 

(5) Do you have any books or websites to recommend to families? 

Websites: these are sites and groups I've relied on mainly because these are sites with parents speaking from experience and are communities dedicated to helping others.

http://www.supportforfamilies.org

http://autismbayarea.org- this is also a magazine this site has connections to all kinds of resources and specific support groups

http://www.sfautismsociety.org

Peninsula Parents of Special Needs Kids listserv (PPSNK)

groups.yahoo.com/group/peninsulaparentssnk

Autism Intervention Bay Area listserv (yahoo group)

https://groups.yahoo.com/group/AutismInterventionBayArea

www.autismspeaks.org

Books

Autism Revolution by Dr. Martha Herbert and Karen Weintraub

The Out-of-sync Child Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz

Engaging Autism by Stanley I. Greenspan

How to Get Through a Meltdown

Meltdowns are part of life for people with developmental delays. You know what it's like that moment before the meltdown starts; you know the triggers, you see the frustration on your child's face, you hear the noises they make before the storm begins. Then it happens - they yell, they cry, they throw things, they hurt themselves and others. You feel your anxiety levels amp up, because you know that you are the person who needs to help them through it, yet you feel as though there's nothing you can do.

While this might not help every situation, we have developed a few ways in which you can bare through the mighty meltdowns in your family:

(1) Catch the triggers and prevent
Prevention is better than cure. Can you alter the environment to avoid typical frustrations? Can you catch the early signs (e.g. noises, mannerisms) and remove the child from the situation?

(2) Retreat
Go somewhere quiet - especially if you are in public. There's nothing worse than the stares of strangers, judging you without knowing the full story. Find a quiet corner in the mall, beeline back to the car, find a vacant bedroom when you're at somebody's house. Just go somewhere quiet.

(3) Prioritize safety and damage control 
This might be a good time for a "bear hug". Hold your child close, to avoid them hurting themselves or others. What can you do to help your child stay safe, and not regret their actions later on?

(4) Sit and wait - then wait some more
Once your child seems to be calming down, don't start talking. Wait far longer than you think they'll need. Test the waters by asking something - if they start yelling again, they're not ready. Wait again. Once your child can talk without losing control of their body, then move to the next phase.

(5) Explain
When the coast is clear, explain the situation with empathy. Acknowledge how the child felt, while helping them to understand why they can't have what they want.

(6) Fast forgiveness
Decide to forgive quickly. You will not feel like it, but make a rule that you won't bring it up again. Leave it, and move on.

(7) Affectionate response
The first action of forgiveness, is to give your child something positive. A word of affirmation, a hug, read a story and cuddle, or share a meal together. As the adult, your job is to show unconditional love. You are not affirming "bad behavior" - remember, you dealt with the behavior - now you're affirming the child.

(8) Repair
Avoid asking your child to say, "Sorry," to someone when you know it's not a heartfelt apology. Instead, focus more on repairing the situation. If your child needs to make an apology of action to another person, have them "fix" what was broken. If it means physically fixing an item they broke, give them some tape and let them fix it. If it's giving ice to someone who is hurt, show them to the freezer and have them wrap it in paper towel. Remember - the repair is not for you, or even the other party. You are showing your child how to make "right" the wrongs in their life. This is a powerful life lesson.

Summer Camp!

-- BREAKING NEWS! Summer Camp is now happening June 30-July4! Enroll your child today! -- 

Summer camp is underway at Kahlon Family Services headquarters this week, and we couldn't be more thrilled with how our first camp is taking shape. With a heavy focus on behavior and social skills, our campers have already been taking risks and learning how to think about the needs of others.

If you're wondering what our day looks like, we always start off with yoga. We are pioneering some field research when it comes to the benefits of our yoga program on the daily affect of the kids involved, by taking statistics on the child's mood/anxiety levels before and after the yoga session has taken place. We don't just want to present another yoga class to your child, we want to be sure that it's an effective life skills tool.

We have a set schedule for camp, with slight variations on a daily basis to provide an opportunity for the kids to use flexible thinking strategies. We endeavor to undertake the most physically challenging tasks in the morning while the day is new, by taking the campers to an obstacle course nearby and working on gross motor skills.

Back at the headquarters, we have been working on projects that encourage our campers to change the behaviors they are struggling with, in order to build a better life for themselves. For example, we work on size of the problem (e.g. Big problems deserve big reactions, small problems deserve small reactions), Superflex (Michele Garcia-Winner curriculum) and other activities specifically customized to meet the specific child's needs.

It wouldn't be summer camp without field trips! Because everything we do has an underlying behavioral purpose, we take field trips that help feed our goals. We are taking a trip to the beach, while stopping at a cafe for a snack. At the beach, kids need to agree on a shared activity and stay within a set boundary. Also, we are taking a trip to Golden Gate Park, for a picnic and some time at the De Young Museum. During this time, our campers are learning about which kinds of foods others may enjoy at a picnic, how to behave socially around mealtime outdoors and being out in the community.

Yoga is the "bookends" of our day, and we love ending with our second yoga session. We focus on breath work, daily meditation and mindfulness.

If you are interested in having your child join us in the upcoming weeks, contact us today at info@kahlonfamilyservices.com

Dealing with Sleep Problems

Most children on the Autism Spectrum have a hard time falling and staying asleep at night. There are many reasons why this is the case, including but not limited to; anxiety, dysregulated circadian rhythm, and problems with digestion. Sleep deprivation will lead to a downward spiral in a child's behavior, and a parent's ability to cope with the challenges of life. While we can't wave a magic wand over the sleep habits of your child, we can offer a few suggestions that may help.

(1) Turn off the screen

We recommend that screen time ends at least one hour before bedtime - that means TV, iPad, Kindle - anything with a screen. The content that we see on these screens stimulates our brains and tricks us into staying awake longer. Make sure that there is a set place to put all handheld devices at night, and we highly recommend taking the TV out of your child's bedroom. If they can't sleep, the devices will be the first thing they reach for - this will perpetuate the problem.

(2) Be light sensitive 

Our bodies need to know the difference between night and day - we do this with melatonin, the hormone that regulates our sleep/wake cycle. Summer time can pose a problem, with the sun staying up until 9pm, you will need to have some tricks up your sleeve. From experience, we can highly recommend light-blocking curtains in your child's bedroom. Eat dinner early, take a relaxing bath and spend as much as an hour in your child's darkened bedroom with lamp light, reading stories so that their brain thinks it's dark outside.

(3) Routine is key 
Every day, keep a routine! Yes, the reality is that some days you will stray from the routine, and that is part of teaching flexible thinking. A regular day calls for a regular routine, and bedtime routines are vital. We recommend; dinner, warm bath with lavender, extended time of relaxation (including bedtime stories) and lights out.

Good luck!