My son Charly...(Hector Luken)

a. How does it feel to be the parent of your child?

It was difficult at first to accept my child’s disability.  I wondered what went wrong during the pregnancy.  Was it something that his mom did or was it because I smoked that caused my son’s disability?  I felt bewildered and confused because I did not understand why my child was different from other children.  He looked the same as other children, but his intellectual ability was limited.  It is difficult and challenging each day, because of the need to shelter my son from the world.  I want to be constantly protecting him from insensitive sarcastic people.  My son often needs help with basic things, like dressing and eating and showering.  He is able to do these things, but needs supervision and help.  One the greatest challenges I have faced as a parent is limiting his potential because I allow his disability to limit my expectations for him.  I have attended Individualized Education Plan (IEP) meetings every year and have had to take a proactive roll in my son’s education.  My son is also ill, more frequently, than other children, and sometimes he also has behavioral problems at school.  I work closely with the school staff to ensure that I am doing everything I can as a parent to ensure that my child is receiving a fair and equitable education.  Being a parent of a child with moderate mental retardation means being an advocate 24 hours a day, 7 days a week.  One of the best things about my child is that he constantly teaches me patience and I am constantly learning so much about the human spirit.

b. How is your child developmentally the same or different from other children at the various ages?

My son physically looks the same as any other child his age.  Intellectually he is different from other children his age, because he cannot understand abstractions.  He is a bit immature and his behavior can sometimes make it difficult for him to make friends.  He is not aggressive, but he is sometimes very impulsive and can be pushy at times.  He is gullible for his age and we constantly have to remind him to beware of strangers.  He is able to do basic math, such as addition and subtraction, but only single or double digits.  He gets easily frustrated when he is unable to understand something so we must be patient when teaching him new concepts.  He likes to do independent things, like wander alone into the toy aisles in the store, but we must monitor where he goes, because he can easily get lost.  He likes to talk to other children in the school that are general education, but I do notice that some students in the general education population hesitate and often ignore him.  In terms of health, he does have some health problems.  He is seen every three months by his physician for a kidney condition he has since birth, a thyroid condition recently diagnosed, and also to monitor his hypertension.  He does miss school frequently when he is not feeling well. 

c. What professionals/agencies do you deal with?  What services are available to you and your child?

My son belongs to the San Gabriel Valley Regional Center.  This agency provides services to children and adults with different disabilities.  The agency was recommended by my son’s special education teacher.  My son has a coordinator that follows my son’s yearly progress and evaluates what goals he has reached that are listed on his IEP plan.  The regional center has lists of support groups for the family and also provides legal and medical facilities that specialize in matters related to people disabilities.  My son and family are provided with lists of community programs that provide special services to people with disabilities (i.e. summer camp, volunteering, community walks, etc). 

d. How did you find out about the above services?

The regional center was recommended by my son’s special education teacher.  The California website also lists a number of centers that are located throughout the state and are divided according to county.  The regional center can also refer their clients to different government programs that provide monetary assistance to people with disabilities.

e. What financial burden, if any, are you experiencing?

The greatest financial burden is when my son gets sick.  Sometimes trying to find specialists to treat his physical medical condition, which the doctors say is unrelated to his developmental disability, can be economically burdensome.  The regional center offers many programs free of charge and the public school my son attends often times pays for the services my son receives (i.e. transportation, evaluation/diagnostic services).

f. What other information do you want to share?

I think we often times face a difficult challenge when we have a son or daughter with a disability.  We are eager to protect and shelter them from the world that at times can be insensitive and cruel.  I think it is a great disservice when we shelter our children to much.  I am always amazed of the things my son teaches me every day.  Patience, by far is one the many things I have learned to embrace and have learned to appreciate.  In my son, I find the courage daily to stand up against inequity.  As I immerse myself in my son’s life and his world, I continuously discover his greatest gift to me—that of unconditional love.