Dandelion | Your Special Needs Resource

WINTER 2015

Embracing Unique Children Thank you to the local families who have so openly shared their stories and experiences with our readers and thank you to our advertisers who are dedicated to serving families with special needs.

WHAT'S INSIDE:Â DANDELION RESOURCES Connecting parents of special needs children with local resources and support.

ALONE IN THE DARK My son has a rare chromosome disorder.

Follow us! www.Facebook.com/goDandelion | www.Twitter.com/goDandelion www.goDandelion.com

Autism Center for Excellence Teaching ABA socialization skills to children 8 – 12 with autism while helping them build a foundation for friendships.

4350 Auburn Boulevard Sacramento CA 95841

For more info, call 916-548-2562 or visit UCPSacto.org

sacramentoparent.com NOVEMBER 2015 23 UCPAd2.indd 1

10/5/15 11:12 AM

R E S OEmbracing U R CtheEspirit S of perseverance.

A guide designed to connect parents of children with special needs with local resources and support.

Autism Center for Excellence, Sacramento

Horses for Healing, Inc., Auburn

Dr. Richard Borghi, Granite Bay

ISIS Healthcare Services, Sacramento

C Horse Ranch, Auburn

Koinonia, Sacramento

Camp Krem Camping Unlimited Boulder Creek

Placer Learning Center, Granite Bay

www.UCPSacto.org | 916-565-7700

www.RichardABorghiOD.com | 916-791-3388 www.CHorseRanchAuburn.com | 530-888-7766

www.CampingUnlimited.org | 510-222-6662

Carly Litvik Music Therapy Services Sacramento

www.MusicWithCarly.com | 916-905-0217

Cater Galante Orthodontic Specialists Rocklin | Grass Valley

www.luvmysmile.com | 916-435-8000 | 530-274-4411

Change Your Lead, Winters

www.ChangeYourLead.com | 650-248-4072

Children’s Choice for Hearing and Talking (CCHAT), Rancho Cordova

www.CChatSacramento.org | 916-361-7290

Families for Early Autism Treatment (FEAT) Sacramento | Bay Area

www.FEAT.org | 916-303-7405

Guiding Hands, El Dorado Hills

www.GHandsSchool.com | 916-939-0553

www.HorsesForHealing.org | 530-887-9573 www.ISISHealthcare.net | 800-385-1877 www.KFH.org | 877-244-5374 www.PlacerLC.com | 916-774-1260

Reach for Speech, Folsom

www.ReachForSpeech.net | 916-216-8816

Sacramento Children’s Museum, Rancho Cordova

www.SacKids.org | 916-638-7225

Solano Learning Solutions, Sacramento

www.SolanoLearning.com | 707-334-7662

Steps Therapy, Sacramento

www.BabyStepsTherapy.com | 916-415-0119

UC Davis MIND Institute, Sacramento/Davis ucdmc.ucdavis.edu/medicalcenter/advantages 916-703-0280

United Cerebral Palsy, Sacramento 916-565-7700 | UCPSacto.org

Weideman Pediatric Dentistry and Orthodontics Citrus Heights www.SacChildrensDentist.com | 916-962-0577

T-Therapy | R-Recreation | M-Medical | A-Advocacy | S-Schools | O-Organization | Tu-Tutor

24 NOVEMBER 2015 sacramentoparent.com

When a parent realizes that their child is not developing typically, it’s common to have a million thoughts rush through their mind.

My son was 4 months-old when we realized he was not hitting his milestones and that something wasn’t quite right. Our pediatrician confirmed our concerns and my mind quickly went into overdrive.

Being the ‘type A’ person that I am, instead of just a million, it felt as if I had two million and two thoughts rushing through my frightened mind. Then, I ran to the internet.

I spent many, many nights alone in the dark, searching for articles and information relating to my son’s different issues. I would often need to stop and look-up words that were foreign to me, the room lit up only by my iPhone. I had become—like many other parents like me—a permanent, full-time researcher (in all my spare time, of course).

I know how alone I felt in those early moments reading in the dark.

Wondering what I could do for our child to make it all better, to make it all just go away.

Then came the diagnosis of a rare chromosome disorder. Just like parents that are given a diagnosis of more well-known disorders, we asked, “Okay, what’s next? What do we do? What should we expect?”

Alone in the Dark

By Sherie Bedrossian Evans Photograph by rust.photography | www.rustphotos.com

Unfortunately, families that are given a rare diagnosis aren’t provided with much of anything. There is very little research to go over, very little information on prognosis. Very little period. In fact, we often don’t even get a name, we get a number. Try saying 19p13.12 microdeletion syndrome five times fast. No, really, give it a go.

After we got the call from the neurologist and were given the name of his disorder, I impatiently waited many months for my genetics appointment.

The appointment, I thought, was going to help me understand. It was going to give me some direction, a plan. Instead, what it gave me was… one of the lowest days of my life.

I was told nothing more than I had already found in case studies available online. In fact, I corrected the doctors and added information unknown to the team more than once during the appointment. They told me, “You are the expert, you will be able to teach us.” That rings in my head frequently on nights when I’m up researching yet another health issue that has cropped up for my son.

They told us it was a fluke, nothing to do with our genes. We weren’t any more likely to pass it on to future children than the next guy. But, I was still starving for information about my son. I wasn’t provided anything more than the same laundry list of likely issues he would develop, that I had already been provided months prior over the phone.

Still, they were kind and they did give me something that has turned out to be invaluable. They told me about the Unique Organization.

Unique, the Rare Chromosome Disorder Support Group, is an organization based in England that was started by a woman much like myself. A unique mom. We unique moms have a way of storming onward and getting things done and fortunately for so many unique families, Edna Knight, MBE did just that.

Being a mom to more than one unique child herself, Ms. Knight felt a need. She turned her efforts toward creating a place where families who are faced with a rare disorder diagnosis could go for information, support and most importantly connections to other unique families faced with the same or similar disorders.

There are many instances where a child may be the only person in the world diagnosed with a particular chromosome abnormality. Then, there are times when someone may be one of ten or in our case, one of about a dozen cases worldwide.

Continued on page 27 sacramentoparent.com NOVEMBER 2015 25

26 NOVEMBER 2015 sacramentoparent.com

Alone Continued from page 25

The Unique Organization keeps a database of members that includes their exact chromosome abnormality and then links families together that match.

Currently there are approximately 14,000 individuals registered in their database.

Seemed like a long shot, but sure enough, we were linked with multiple families sharing similar gene mutations.

We have become like a family, a global family linked by Unique. I speak to other Unique families almost on a daily basis on our Facebook “cafe” as we call it. We have laughed, cried and hoped together for years now and I couldn’t imagine things without them. Unique is a very important part of many of our lives and I have so much to thank them for.

Where there is a lack of information from medical professionals, we fill in blanks for each other all the time. Even though many of our disorders aren’t exactly the same, our children share many of the same issues, like hypotonia, feeding difficulties, epilepsy, mobility issues and the list goes on. It’s nice to have one place to go for support instead of breaking down our child’s issues into separate pieces. It exhausts me just to imagine how many different support group logins and passwords I would need.

My son is almost four years-old now and we have come a long way with many nights in the hospital, many procedures and surgeries and many therapy appointments. He is the strongest little guy I know. He is my strength.

He is a lot of work, I won’t lie. But it’s all so worth it. To see him develop, on his own little terms, even if they are sometimes stubborn terms. To see him be so strong, when faced with so many obstacles is a privilege to me.

He continues to be faced with many challenges such as speech, movement and behavior. He uses a feeding tube and requires oxygen while sleeping. He struggles with epilepsy and has been diagnosed with ataxic cerebral palsy. All of this falls under the umbrella of his rare chromosome disorder.

We will always be unique, but like I always say to my boys, normal is boring.

I embrace my role as a unique mom and I will forever light up the night with the glow of my iPhone.

If you are reading this somewhere in the dark, by the light of your phone and feeling alone, please know that you aren’t.

For more information on rare chromosome disorders or to donate to Unique: Unique the Rare Chromosome Disorder: www.rarechromo.org For more information on 19p13.12 microdeletions: http://www.rarechromo.org/html/DisorderGuideConfirm.asp?ch=Chromosome%20 19&fn=19p13.12%20microdeletions%20FTNW.pdf&folder=information Sherie Bedrossian Evans is a freelance writer living in Auburn, along with her supportive husband and two wonderful young boys. She writes on a variety of topics including special needs parenting, using her sense of humor to both educate and inspire. She enjoys spending her rarely experienced free time seeing a favorite band play and trying to relive her youth.

The earlier the treatment The better the outcome

Find more stories and resources at www.goDandelion.com sacramentoparent.com NOVEMBER 2015 27

PARENTS: At YOUR Wits’ End with your child’s reading, learning or behavior problems?

Ask yourself these questions about your child • Is your smart child struggling?

• Is your Dyslexic child not getting the help he/she needs?

• Is the new “COMMON CORE” making things worse for your child?

• Are homework battles causing chaos and crisis?

• Have you tried other tutoring services without solving the problem?

• Is the GAP IN SKILLS getting larger?

• Have you been told by others “not to worry, he will grow out of it and catch up,” but you know better?

• Do you know there is a “glitch” in the way your child learns but don’t know what it is and what to do about it?

For the Academic & Cognitive Assessment With Coupon Only expires 12/1/2015

Keeping Pace Learning Center and Reading Clinic (916) 686-1619 | www.keepingpacelearningcenter.com

Serving students in the Greater Elk Grove area since 1999.

28 NOVEMBER 2015 sacramentoparent.com