Spring_2007

Lacey’s Story

    My daughter Lacey was fortunate to be born in 1984, a time when there was adequate funding for community services for people with disabilities. 

At ten months old Lacey was diagnosed with cerebral palsy and that began Lacey’s social interaction/inclusion in the community. Lacey started attending an early intervention co-op preschool in Aberdeen.  When she was 18 months old she began riding the bus, which increased her social interaction /inclusion. (Mom had to follow the bus everyday to make sure her baby was o.k.)   Lacey enjoyed being on the bus and loved to be the first one on and  last one off. 

Because Lacey was born in the era where services for people with disabilities were readily available, our family received what is called family support.  This service allows a family to be allotted a set amount of money each year to be used for counseling, therapies, special equipment or respite care; respite care providers come in to your home and give the family a break from care.  Money is not given directly to the family. The family puts in a request for the services; the Division of Developmental Disabilities approves it and pays it directly to the person/agencies/organization providing the service. Our family used the respite care services most of the time which increased Lacey’s interaction/inclusion with others in the community.

I began an in-home day care (which I did for 23 years) in order to help with the additional medical costs and travel expenses to see doctors and other professionals. Lacey’s father wanted to place her out of our home, but that was not an option for me.  That difference in attitude added a big strain on an already shaky marriage.   So I also began the home based business of Home Interiors (which I did for 12 years) in the event that I would possibly become a single parent, which I did.

The daycare provided Lacey with social integration/inclusion with children without  disabilities, and all my Home Interior customers knew my children which brought her even more integration/inclusion. 

 When Lacey’s brother, Wes, began playing sports we would attend his practices and games which helped her be known even more within her community. 

Lacey, Wes and I merged our lives with Larry Garman and his son, Josh, in 1992.  When I married Larry, the most awesome man in the world, Lacey gained the best dad we could have ever hoped for, and he helped Lacey’s integration/inclusion to continue. 

     It was just so natural to have Lacey be a part of everything our family was doing from camping, to Grand Prix Car Races to trips to Enchanted Village, even all the way to Disneyland and Canada.

     When the community special education co-op broke up in 1997, Lacey started school at Beacon Elementary in our home town of Montesano.

       This was a very positive experience as she had an awesome support staff who integrated her in the classroom, at recess, and in the lunchroom which expanded her social circle even more.  As she moved  in to the Junior/Senior school, we had  several things to overcome.  She had gone from an integrated elementary school to a very segregated setting in the Jr/Sr  school. I worked on breaking down those barriers by:

Initiating the idea of Lacey being an honorary cheerleader that attended the games and where her whooping and hollering was accepted and appropriate.

Lacey participated in all dress up events such as game days, spirit week, which included pajama and crazy hair day.

I recruited Jr & Sr  High students to work in the segregated classroom with Lacey one school year, which was very beneficial to everyone. However, these students did not continue the following year because they didn’t like the environment of the segregated classroom.

Lacey is now 23 years old, out of school, and has a very inclusive lifestyle. She swims on Mondays at the YMCA and goes for a massage on Tuesdays in Montesano. Wednesday is her vocational training day, Thursday is her physical therapy day in Hoquiam, and Fridays is her lovely Lacey day where she gets her beauty pampering (haircuts, finger or toe nails painted, clothes shopping, etc). Although Lacey has a conversion van for transportation, she takes the bus most of the time to access these activities for continued social interaction/inclusion with other community members.

These activities are made possible through Lacey’s Social Security Income and her Special Needs Trust Fund. Financial contributions are made on behalf of Lacey, and the trust assists in meeting her needs today as well as when we (her parents) are no longer around to help out with these little extras.

 I never want Lacey to move away from Montesano or Aberdeen because she has community inclusion here.  When Lacey is out in the community people talk to her and call her by name.  So many people know and interact with her. If Lacey were to move out of this community, she would not have this.  She would have access to the community, but not community inclusion.    I feel that living in Grays Harbor all her life and because of all the above opportunities she had growing up, she truly does have community inclusion.  This is extremely important to me since Lacey’s only way of communicating is by body language. This community integration/inclusion provides me with the peace of mind of knowing that if someone saw something that didn’t seem right, they would get that information back to our family. This can be an important safety issue for Lacey.

 I want to make sure that no one gets the false impression that inclusion is a simple and easy task. There are some  extra steps that people involved with Lacey’s life need to take for inclusion to happen and be successful.:

• People in Lacey’s life make sure that before she leaves the house she is clean, teeth brushed, hair combed, good hygiene, clothes that are clean, matching, pressed, are stylish and the right size.                            
•       She is always a pleasure to look at, which is important for first impressions with all people, regardless of their abilities. 
•  Teaching her appropriate social skills such as not spitting, pulling hair, head butting, hitting herself when she was frustrated or wanting  attention, etc. When Lacey tried to pull hair, raspberry or head butt people she would have a consequence, and it didn’t take her long to stop those behaviors.
• Planning:  there are no spur of the moment plans for our family. Everything takes careful planning time. Even the simplest tasks that people without disabilities don’t think about such as transferring from one place to another, in and out of the car, the bathtub, toilet, getting dressed, etc), take more time and planning for Lacey.
• Flexibility: being able to leave earlier than planned because Lacey became overwhelmed or over stimulated, or just wanted to be back in her home environment. 
• Developing tolerance and understanding of other peoples reactions when they see or hear Lacey cry out, choke on something, or let out a loud, happy squeal. Anyone involved with Lacey’s life learned to be able to “get past it”, and move on.

     I firmly believe that all people with and without disabilities have the ability to learn cause and effect, or right from wrong.  I saw this personally from years of my in-home daycare where 2 and 3 year olds, along with Lacey, who is considered significantly delayed, learned these things. 

People with disabilities want to be, and should be treated like everyone else.  What is inappropriate and unacceptable for society is so for people with disabilities as well.  The only difference is that the way of teaching people with disabilities might need to be adapted or modified in a way that they can understand, but the benefits that can be gained from learning appropriate social behavior far outweigh the extra time it takes to teach them.  

Lacey is able to provide community awareness and bring down barriers without speaking a word, by simply being in peoples lives and her community in such places as school, my in-home child care, sporting events, community outings, and her assistants’ families.

Author Richard Lavoie from the book “Learning Disabilities and Social Skills Last one picked…..First one picked on” gives some very sound and simple advice for family members, teachers, professionals, and community members.    He says:

“People of all ages who have disabilities are constantly being humiliated and embarrassed because of their lack of social skills. We  must begin to look at social mistakes as teaching moments to help people gain understanding of what is, and is not, socially acceptable and why.

Social skills are about different ways to interact.  It’s not just manners.  Appropriate social skills are not something people with and without disabilities instantly have, they have to be taught, they are learned skills that are constantly being refined throughout life.”

   The person with disabilities runs the risk of failing in all areas of their life if they can’t grasp social appropriateness.

Something we can do is work together to target specific social skills and set goals.  We can also make the person aware of the common traits which contribute to a person’s popularity.  These are: “smiles/laughs; greeting others; extending invitations; conversing with others; sharing and giving compliments.”  There is nothing academic about these characteristics, but if learned, and practiced, they can substantially increase acceptance for the isolated or rejected person.

  Inclusive leisure experiences encourage and enhance opportunities for people of varying abilities to participate and interact in life’s activities together with dignity.    Additionally, the benefits of this participation may include:

Providing positive recreational experiences which contribute to the physical, mental, social, emotional, and spiritual growth and development of every individual.

Fostering peer and intergenerational relationships that allow one to share affection, support, companionship and assistance.

Developing community support and encouraging attitude changes to reflect dignity, self-respect and involvement within the community

If you are interested in assisting The Arc of Grays Harbor in our Cities of Abilities Goal please give us a call Toll Free at                                     1-866- 537-7272.