How I Spent My Summer Vacation

28 Sep

I have many weaknesses.

Chocolate.  Coffee-table books.  The Container Store.

But one flaw that impacts far more than my waistline or wallet is my ongoing reluctance to ask for help.  This summer, though, I didn’t have a choice.  Circumstances compelled me to rally against my introverted instincts on behalf of Paige, my 14-year-old with autism.

I should have suspected we were in for an unusual summer during the last week of the 2009-10 school year.  For the first time ever, Paige refused to board the bus.  At the time, I chalked up her balking to burnout.  After all, she had struggled all year to adapt to junior high.  So, frankly, had I.

Not helping matters was “the biter,” a fellow student with autism in most of Paige’s classes.  After the fourth (and final) chomp on Paige’s leg in early May, I asked for a schedule change so Paige would have very limited contact with that particular child.  While the teachers readily honored my request (making me kick myself for not asking sooner!), plenty of damage had been done.  I interpreted my non-verbal daughter’s shrieks as signaling she had no intention of returning.

I figured everything would right itself during the two-week break before summer school started.

Wrong!

Paige refused to go to summer school—by bus or by car.  After she effectively missed the first two weeks of ESY (a.k.a. Extended School Year), I broke down and asked the district for help.  Actually, I began begging for help from whomever would listen!

I’ll start with the AISD, which dispatched a behavior specialist and an alternate curriculum coordinator.  Together, those two professionals designed and implemented a program to get Paige to school.  These remarkable women came to our home at 7:30 a.m. every school morning for the duration of the summer.  At first, they manually directed Paige onto the bus; one of the women would then ride with her and escort her into the classroom.  By mid-August, both ladies were hiding in our front bushes, watching as I led Paige into the bus.  They provided support the first week of school, too, but by then Paige was doing great.

The AISD ladies also helped us decide what to do next.  Paige’s dad and I didn’t want to send her back to the junior high.  We all agreed that Paige should bypass 8th grade and start high school on August 23.  So far so good.

Concurrently with reaching out to the school district, I sent an S.O.S. to my contacts in the Metroplex’s special-needs community.  The most helpful person was Clay Boatright, a Plano father of twin girls with multiple disabilities.  Clay, a first-rate advocate who sits on numerous boards and committees including the Arc of Texas, forwarded my plea for help to his network.  Savvy parents and professionals from around the state sent encouragement, advice and resources.

The upshot: Paige now receives Medicaid; we have arranged for respite care; I no longer want to jump off the roof!  My husband and I forged a wonderful relationship with Dr. Carolyn Garver and her staff at the Autism Treatment Center.  We believe ATC will serve as a lifelong resource for Paige.  (I visited ATC four times this summer and even attended its benefit Pegasus Ball at the Fairmont Hotel on Sept. 11 in the company of my Dallas Moms colleagues, Nancy Churnin, Leigh Attaway Wilcox and Dan Burns.  We had a spectacular evening!)

Here are some of the resources I found this summer.  Not all proved useful in our case, but they might in yours.  If you feel desperate about your child’s situation (as I most certainly did), please ask for help.  My family is in a far better place now because I finally did.

Autism Treatment Center

10503 Metric Dr.
Dallas, TX 75243
972-644-2076

www.atcoftexas.org

I consider ATC the gold standard in autism treatment and support in the Metroplex.  Help for children and adults with autism.

ARC of Dallas

12700 Hillcrest Rd. #200
Dallas, TX 75230-2063
214-634-9810

www.arcdallas.org

ARC of Greater Tarrant County

1300 W Lancaster #104
Fort Worth, TX 76102
817-877-1474

www.arcgtc.org

ARC of Northeast Tarrant County

PO Box 14455
Haltom City, TX 76117
817-834-7700

www.arcnetc.org

ARC of Texas

8001 Centre Park Dr.
Austin, Texas 78754
1-800-252-9729

www.thearcoftexas.org

ARC advocates on behalf of and in collaboration with people with developmental disabilities and their families to improve the quality of life and to expand opportunities to participate actively in the community. Services include information and referral, individual and systems advocacy, as well as support and education of the community, service providers and individuals with developmental disabilities and their families. Through the Family Connections program, education and training regarding the rights of children with disabilities and their parents in schools is provided, as well as the Our Special Children support groups (a parent-to-parent program), which offer monthly informational presentations and support for parents with children with disabilities (in English and Spanish). Social/ recreational programs are provided for adults, teens, and families affected by developmental disabilities.

Autism Society of DFW Metroplex

214-208-0792

www.autism-society.org/dallas_chapter

Autism Society of Greater Tarrant County

817-390-2829

www.asgtc.org/index2.html

Crystal Charity Ball Autism Project

214-456-7700

http://ccbautism.org

Provides a wealth of services, from community resources to testing/evaluations to social support groups and parent training. In concert with professionals from UT Southwestern, UT Dallas and Children’s Medical Center Dallas, the Crystal Charity Ball Autism Project connects families and professionals to a range of services for children of all ages who have been diagnosed with an Autism Spectrum Disorder (ASD) or who may be showing signs of ASD. They also coordinate multidisciplinary programs for applied research and the diagnosis, treatment, and identification of possible causes and cures for autism spectrum disorders.

Easter Seals Dallas

4201 Brook Spring Dr. #A
Dallas, TX 75224-4968
214-372-3300

www.dallas.easterseals.com

Easter Seals North Texas

1424 Hemphill St.
Fort Worth, TX 76104-4703
817-759-7973

www.ntx.easterseals.com

Families for Effective Autism Treatment (FEAT-NT)

4239 Road to the Mall
North Richland Hills, Texas 76180
817-919-2228

www.featnt.org/home.php

FEAT-NT provides information and resources. FEAT-NT has online resources as well as a resource center. They also provide informational meetings/trainings and support groups.

Life Point, Inc.

580 Pleasant Ridge Dr.
Mansfield, TX 76063
817-473-7125

www.lifepointinc.org

Life Point is a non-profit organization established in 2002 to provide support to young adults with moderate to severe Autism. Through these programs individuals are provided lifelong educational support. The goal is to provide them with the opportunity to live and work in a safe and preferred environment while participating in the daily activities of the community in which they live. Clients served are ages 15 and up. (Please note: I have a good friend whose son has done the summer program for the last two years. He loves it!)

Mental Health Mental Retardation of Tarrant County

1300 Circle Dr.
Fort Worth, TX 76119
817-569-4000

www.mhmrtc.org

Community Outreach is the point of contact for those seeking information about community resources and supports for individuals with mental retardation or other developmental disabilities and their families. Those seeking assistance should call (817) 569-4000. Program maintains a monthly calendar of events, opportunities and support groups. Inquiries may also be made through the agency web-site: www.mhmrtc.org.

Information about specific programs and waiting lists is also available for:
* Home and Community Based Services (HCS)
* Intermediate Care Facilities for Mental Retardation/Related Conditions (ICF-MR/RC)
* State Mental Retardation Facilities
* In-Home and Family Services (IHFS)
* State Funded Mental Retardation Services
* Service Coordination

The Clubhouse for Special Needs

800 Brown Trail, Suite C
Bedford, TX 76022
817-285-0885

http://theclubhouse.org/main.html?src=%2Findex2.html

Provides a safe and fun place for teens & young adults who have mild or moderate, mental/physical challenges.

Government Agencies:

Department of Aging & Disability Services

1-877-236-6500

Community Living Assistance and Support Services (CLASS)

1-877-438-5658

Deaf/Blind with Multiple Disabilities (DB/MD)

1-877-438-5658

Home and Community Services (HCS)

1-877-438-5658

Medically Dependent Children’s Program (MDCP)

1-877-438-5658

Please note: This is by no means an exhaustive list of resources. Feel free to add any agencies or programs that were helpful to you in the comments section!

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