Information and resources for families with children with disabilities

1. Raising Children with Disabilities
Carlos Quijada
EDSP 432 Summer 2014

2. -SCOTT HAMILTON
The Only Disability In Life Is A
Bad Attitude.

3. 12.1%
• The percentage of non-institutionalized, male or
female, all ages, all races, regardless of ethnicity,
with all education levels in the United States who
reported a disability in 2012. - American Community Service

4. Select types of Disabilities
• Attention-Deficit/Hyperactivity Disorder (AD/HD)
• Blindness, Visual Impairment, Hearing Loss
• Developmental Delay
• Down Syndrome
• Emotional Disturbance
• Learning Disabilities | Includes dyslexia,
dyscalcula, and dysgraphia.
• Rare Disorders

6. “to ensure equality of opportunity, full
participation, independent living, and
economic self-sufficiency for
individuals with disabilities.”

7. Your child is a person first, always
• Disability does not define your child’s selfhood, any more
than the color of his or her eyes does.
• Individuality grows from the rich soil of personality,
experience, health, education, upbringing, and more.
• Know this for fact, and see it unfold in real time, as your
child grows and matures.
• Having a disability is part of the mix, but so are your child’s
strengths, humor, talents, and interests.
-National Dissemination Center for Children with Disabilities

8. Don’t let the labels get you down
• We humans like to have a name for things—and that
includes disabilities. These can seem like labels sometimes,
limiting and impersonal.
• It’s not uncommon for parents to resist having a label hung
on their son or daughter.
• Use the label when it’s convenient or helpful. Forget the
label the rest of the time. Your child’s the same person,
either way. He or she hasn’t changed one bit, label or no
label.
-National Dissemination Center for Children with Disabilities

9. Disability does not mean that your child cannot learn
or be educated with peers without disabilities.
• It is preferred that students being
educated together in the regular
classroom.
• Everyone learns differently.
• Your child can learn, will learn. It’s the job
of special education to adapt instruction
to fit your child’s learning needs.
-National Dissemination Center for Children with Disabilities

10. You know your child best.

11. Common Reactions
• Denial - “This cannot be happening to me, to
my child, to our family.”
• Anger - Early on, anger is so intense that it
touches almost anyone, because it is triggered
by the feelings of grief and inexplicable loss
that one does not know how to explain or deal
with. You Are Not Alone, by Patricia McGill Smith

12. Common Reactions
• Fear - People often fear the unknown more than
they fear the known.
• Guilt - “Did I do something to cause this? Am I
being punished for something I have done? Did I
take care of myself when I was pregnant?
Guilt feelings may also be manifested in spiritual
and religious interpretations of blame and
punishment.
You Are Not Alone, by Patricia McGill Smith

13. Common Reactions
• Confusion - Not fully understanding what is
happening and what will happen, confusion
reveals itself in sleeplessness, inability to
make decisions, and mental overload.
• Powerlessness – Unable to change what is
happening is very difficult to accept.
You Are Not Alone, by Patricia McGill Smith

14. Common Reactions
• Disappointment – Knowing that a child is not
perfect poses a threat to many parents’ egos
and a challenge to their value system.
• Rejection – Can be directed toward the child
or toward the medical personnel or toward
other family members.
You Are Not Alone, by Patricia McGill Smith

15. On Death and Disability: Reframing Educators' Perceptions of Parental
Response to Disability, by Keith Allred

16. You’re not alone.
• Disability being part of the human experience,
it’s safe to say that many parents are where
you are today, or have been where you are–
searching for answers.
-National Dissemination Center for Children with Disabilities

17. Family Resources
• Professional Alliances/Partnerships
• Family-Centered Practices:
– Recognize parents or primary caregivers as experts on their
child.
– Acknowledge the family as the ultimate decision maker for their
child and family.
– View the family as the constant in the child’s life and the service
providers and system in their family as transitory.
– Respect and work to support family priorities, goals for service,
and extent of involvement.
– Value trusting, collaborative relationships between parents and
professionals.
– Work to ensure culturally competent services.
– Include a focus on capacity building within the family.
Understanding Families, by Marci Hanson
& Eleanor Lynch

18. Positive Impacts of Children with
Disabilities
• Source of Joy and Happiness – Pleasure in the
achievement of their children.
• Increased sense of purpose and priorities –
Simplification and prioritization of life
• Expanded personal and social networks and community
involvement – Families and organizations linked
together
The Positive Impact of Children with an Intellectual
Disability on the Family (1998), by Tim Stainton

19. Positive Impacts of Children with
Disabilities
• Source of increased spirituality
• Source of family unity
• Source of tolerance and understanding
• Source of personal growth and strength
• Positive impact on others
The Positive Impact of Children with an Intellectual
Disability on the Family (1998), by Tim Stainton

20. External Resources
• National Dissemination Center for Children with Disabilities
- http://nichcy.org/
• The Center for Parent Information and Resources -
http://www.parentcenterhub.org/
• Pacer Center – A financial resource for parents of children
with disabilities -
http://www.pacer.org/publications/possibilities/
• National Center for Learning Disabilities -
http://www.ncld.org/