Saturday, November 8, 2008

Wise words from Lavoie

A friend sent me this the other day. I thought it was one of the best things I'd read recently describing the profound feeling of vulnerability one feels as a special parent. Other special parents know exactly what I am talking about but how do you describe it to your family and friends who aren't going through it? Or how do you help teach your community tolerance and acceptance?

Richard D. Lavoie, M.A., M. Ed. is the author of, “It’s So Much Work to be Your Friend: Helping the Child with Learning Disabilities Find Social Success” . His book is a real jem and I would highly recommend it.

The following is a recent Letter to the Editor Lavoie submitted to the Boston Globe during the presidential campaign.

Governor Palin's journey of a thousand miles

As an advocate for families of handicapped children for over three decades, I have taken a special interest in the role that Trig Palin is playing in the Presidential campaign.
Trig, now six months old, is nominee Sarah Palin’s son. He has Down Syndrome. Governor Palin often tells her audience that she will be a champion for “special needs families” because “she knows what you’re are going through.”

With great respect and empathy, I must say, “Sorry, Governor, but you don’t”. You will…someday. But not now. Not yet.

Trig is – and always will be – a blessing in your family’s life. But, Governor, your journey has just begun. You will understand…someday. But between that day and today, there will be a lot of other “somedays”.

Someday…you and your family will spend stressful hours in a hospital waiting room while Trig undergoes corrective surgery. The doctors will call it “routine” …but that characterization will seem foreign and insensitive to you.

Someday…a relative or “close friend” will suggest that Trig not be brought to a holiday function because “it may be too much for him to handle.” Your relationship with that person will never be exactly the same again.

Someday…all the students in his class will be invited to a birthday party…except Trig.

Someday…some stranger in a store will stare at him and ask an insensitive and intrusive question. Startled, you will give a bland response. But for several days after the incident, you will generate great and clever retorts that you “should have said”. (By the way, you won’t be able to recall these “clever retorts” the next time this occurs).

Someday…your adorable daughter who stroked Trig’s hair during the GOP convention will grow into adolescence. Trig will embarrass her in front of her friends and she will tell you, “I hate him! I hate him! I hate him!” (…she will feel guilt-ridden after her rant and will cry herself to sleep that night).

Someday…you will have to place him on the special bus.

Someday….you will feel that “no one truly understands” your son and you will isolate your family. You will discontinue his medications and cancel his therapy sessions. You will come to regret these decisions and will be forced to reconstruct your support system from scratch.

Someday…..Trig’s fellow Cub Scouts will realize that his performance is “holding them back” and will write and sign a petition on construction paper requesting that he be dropped from the troop.

Someday…you will recognize that toilet training will take years…not months.

Someday…he will sob bitterly in his bed and you will hug him tightly. But he will be unable to tell you where his pain is coming from.

Someday…you and your husband will decide to take separate vacation plane flights because of your gut wrenching fear of what would ever happen to Trig if the two of you were to die together.

Someday…you will take Trig on a long and expensive journey to meet and be examined by a “professional” who claims that he can “cure” your son. After weeks of “therapy” you will realize that the approach is baseless and you will wish that you had invested the funds in tutoring and counseling.

Someday….his name will enter the nomenclature of his middle school and will become synonymous with “A Loser”. When a kid makes a public, embarrassing mistake others will call him “a Trig”. Thankfully, he will not understand the reference.

Someday…you will – inexplicably and irrationally – blame your husband for Trig’s plight and you will have an intense and hurtful argument. You will apologize later…but the damage will have been done.

Someday…you will deny the severity of Trig’s problems and you will insist that he be allowed to participate in challenging academic or social programs. He will fail miserably and publicly. You will be greatly guilt-ridden.

Someday…you will attend an Individualized Educational Plan meeting. A dozen professionals will pontificate about Trig’s skills and needs. You will wonder whether any of these people REALLY know your son.

Someday…you will begin researching long-term housing for Trig when he reaches adolescence. You will learn that there is a 5000-person waiting list for placement.

Someday…you will take him out for a special dinner on his Prom Night and you will hope that you can take his mind off the event that he is missing.

Someday….you will sit down with his siblings as they are building their adult lives and explain that they must also plan to play an ongoing role in Trig’s life because Mom and Dad will not live forever.

Most “special parents” I know have lived these “somedays”. They recognize – as you will, Governor- that raising a special needs child also has great blessings, triumphs, victories and golden moments. You will meet extraordinary people on this journey.

Governor Palin, my thoughts, prayers and best wishes are with you and yours’ on this journey. I suggest that you contact other special needs parents and talk to them. They are a remarkably generous group. Learn from them. Listen to them. Lean on them. But don’t try to lead them. Not yet. You’re not ready.

Governor, I pray that you will be ready……someday.

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