Sunday, April 5, 2009

Parenting a Child with Down syndrome or Other Special Needs – a Declaration of Rights

1. You have the right NOT to jump up and down with joy that you received a “special” child.
2. You have the right to tell G-d that in your humble opinion, Mrs. XYZ down the street is really much more saintly than you, and so you are interested in asking how this problem bundle of joy ended up on YOUR doorstep and not hers…….
3. You have the right to OCCAISIONALLY miss a therapy session for your child. (ie, If you have a temperature of 40 C, or if you have the mumps/chicken pox/poison ivy, you are excused.)
4. You have the right to join the debate team. Topic: If G-d gives you another additional child with special needs, will that mean that He REALLY HATES or REALLY LOVES you?
5. You have the right to punch the doctor who asks in a sticky-sweet voice “My Dear, Why didn’t you make an amnio?!?”in the eye.
5. You have the right to the illusion belief that your child is the smartest/cutest/ funniest/ yummiest child around, as long as that doesn’t prevent you from going to therapy.
6. You have the right to think (but not say) that anyone who aborts a baby with Down syndrome is absolutely stark raving mad. (This has nothing to do with points numbered 1 and 2. There is a big difference in wanting this journey and recognizing it as being worthwhile….)
7. You have the right to that occasional grumpy old “I can’t take this anymore” day. (Tread water. It passes.)
8. You have the right to be an un-perfect parent. Even if your special child is adopted. Your job classification is “Mom”, not “angel” (withstanding all rumors to the contrary).
9. You have the right, when it comes to choosing an educational solution, to disagree with
Your child’s doctor
Your mother-in-law
Your neighbor
Your child’s therapist
Anyone else you might tell you what to do.
(He/she is YOUR child.)

10. You have the right to at least one good laugh a day. (Free of charge and without having to fill out any forms for it.)


Anonymous said...

I would add:
You have the right to work outside the home because you need the money but to secretly admit that you also like it (IF you like it, or course)

TUC said...

Do I have the right to the occasional good cry without The Public jumping to the conclusion that I don't really love, want, enjoy my child?

I appreciate this list. It is good to know my rights ;-) As usual, you have good wisdom to share.

Cate said...


rickismom said...

TUC-yours is a REALLY good point!

Danielle said...

Love it, love it, love it!!