What Did You Just Call My Daughter?

On the benefits of having an open mind about one's child called a "retard", or having intellectual deficits, being mentally deficient, and other interesting and ridiculous things...

When I was just starting out as a child and school psychologist in Syracuse, NY almost 35 years ago, I administered batteries of tests to children to determine their eligibility for programs designed to remediate their learning disabilities, what were termed their "handicaps" at that time. I thought I knew so much. Armed with the best that Syracuse University's school and clinical programs taught, I offered parents a clear and cogent understanding (using of course the best practice efforts at that time) of their child's diagnosis and needs in clinical terms.

I was so impossibly wrong about how to go about sharing this information, not having the slightest clue about how to impart this information mindfully and with humility. I cringe at the thought of my arrogance then at those parent interpretives. At remembering how the parents bravely fought not to crack open, break down, cry with shame. And I was so proud of myself: laying out their child's disabilities and deficiencies with devastating clarity.

I became one of those parents 20 years ago.

I sat, holding back my sobs, my fears, my heart and body slammed and split open by the devastating words, the mountain of words, that inadequately described our beloved and struggling daughter. We listened, as professional after professional mounted, with devastating clarity of their own, a campaign designed to convince my husband and myself of her inadequacies, her deficits, her inability, her other-ness.

When we finally found a school community in another state which offered her a chance at a life filled with purpose, with laughter, with opportunity, I cried with joy. For the first time in her life and our lives with her, her new teacher asked us, "What does she need from us?" and told us that the community could learn as much from her as she could learn from them.

Recently, over a Skype conversation with our daughter, she proudly held up a stunningly multi-colored handmade card. She had delighted in making it for our 29th anniversary this year. It is a tribute to her resourcefulness, her determination - and to the love which flows between all of us.

About 10 years ago, we were told by a sorry excuse for a teacher (my daughter's name for the woman was "That Witch") at a public school meeting that included over 15 school staff and four of us (my husband, myself, our amazing Occupational Therapist Jo Teachman and our friend Dr. Gail Rodin, neuropsychologist extraordinaire) that our daughter would never learn to read or write, or tie her shoes. The absolute truth is: if someone can imagine it, they can find a way to do it. And our daughter wanted to read and write. She now acts in plays, writes in her storybooks, and reads at a fifth grade level. Her level of generosity and compassion is quite something. She has, however, never learned to tie her shoes.

As my mother (the teacher who retired after 43 years) once remarked about the way my daughter is put together: "The cloth is whole (it's cloth of gold). There are just some holes in the cloth."

In closing, I'll submit this poem for your consideration by Laura Davies Foley, a most sensitive poet and mother of three wonderful young people.

Parents of Children with special needs are blessed. Their hearts grow every day larger, softer. There is no armor, no shell hard enough but it cracks and in comes the painful sun. There is no forgetful cave of sleep for them, no loud gestures from mountaintops, no scaling trees, no surety but a growing, steady wakefulness, an attention to simple leaves and how they gently hold the morning light, holding and not breaking.

(reprinted with permission from the author from her book of poetry: (2007) Syringa. Rowe, MA: Star Meadow Press, p. 32.)

Speech Delay   Asperger's Syndrome Concerns   

Individualized Family Service Plan - Help for Families of Young Children With Developmental Delays

Individualized family service plans (IFSPs) are a tool to assist parents of children with disabilities from birth through the age of two. They are created collaboratively by multi-agency teams of professionals and the family of the child with a suspected developmental delay. IFSPs revolve around helping the family to facilitate the child's development. The guidelines for IFSPs are spelled out in Part C of the Individuals with Disabilities Education Act (IDEA) and all states in the United States have laws and processes for providing early intervention services.

Children are usually referred to early intervention services through their doctor or through child find services available from your local school district. In some states, IFSPs are coordinated through the Department of Education and in other states, IFSPs are coordinated through the Department of Human Services. If you Google your state's name and IFSP you should be able to find the resources you need. If you have a child who exhibits developmental delays in their physical, cognitive, communicative, social and emotional and/or adaptive skills areas they may qualify for an IFSP.

IFSPs may include screenings, providing a range of therapies to the child, providing family training, providing financial assistance, providing important medical and educational information and providing emotional support to the families of children with developmental delays in one or more areas. Services are not based on financial need and service fees are usually based on a sliding fee scale and vary from state-to-state. There is a strong emphasis on providing support to families of underserved populations, which include; children of color, children living in poverty, homeless children, children living in rural communities and children who are wards of the state

IFSPs are generally revised annually and reviewed every six months or sooner if the parents put in a request for an earlier review. IFSPs are focused on the family as a whole rather than just the individual child because the environment that the child is developing in strongly correlates with their development. Services from agencies are not forced upon parents but are offered to assist the parents in helping their child to reach developmental milestones. The child find team usually includes professionals from the field of education, the medical field, the social services field, the pediatric therapy field and the counseling field.

This diverse team usually screens and assesses the child and then works with the family based on their level of need in different areas to access services their child may need. Whenever possible, therapies are provided in the natural environment of the home or community to enhance the families ability to help their child develop the skills they need and to foster independence. If the team determines that services and support are no longer needed the IFSP may be closed. Usually a few months prior to a child's 3rd birthday, children with developmental delays will be reassessed to determine their eligibility for special education services, which may begin on a child's 3rd birthday if he or she is deemed to be a child with a disability as defined in Part B of IDEA.

Speech Delay   Asperger's Syndrome Concerns