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In This Brave New World, We Are The Village

There are many amazing blogs by mothers of children with special needs out there in the blogosphere. Recently I read a blog post by a mother of a special needs child about the bothersome reactions strangers have to her child when out in public. I reached out to her and left a comment reminding her that up until recently special needs children were automatically institutionalized, or kept hidden away at home. Today, thanks to greater medical and psychological understanding, these children and adults are gaining acceptance and standing up for their rights. We as trailblazers must educate some of our society about this portion of our planet’s population.

My children have been involved with the CHIME Institute for many years, even though only one of them is technically considered a special needs child. CHIME believes in inclusion. While the environment is hardly perfect, at least it is a step toward improvement.

Just this morning I saw an older child laughing at the way a younger child with Downs was pronouncing something. I didn’t say anything because the younger child was too smart to give this kid the time of day, but I did catch the older one’s eye and give him a stern look. He knows I know his parents, and he shuffled away. I hope that was enough of a warning. I’ll keep my eye on him.

For a glimpse into the CHIME Institute, click here. For some great mom blog reads, click here and here. Some of the comments are great, too.

Would You “Sabotage” Your Special Needs Child For More Services?

We all know the bad news about the economy. We also know that raising a child can be expensive, and raising a special needs child can be incredibly expensive. Public schools and agencies can’t keep up with demand, so only the most extreme cases qualify for services. Usually this involves an assessment or examination. Many times I struggle with myself – I want my child to do well on these tests, but I also want her to get as much assistance and support as possible.

Other special needs moms say things like, “Well, I know he can do that task but he was tired so he wouldn’t cooperate,” and I wonder if they put their child to bed late on purpose. Or a caregiver will “forget” a medication, or let a dietary rule lapse before an appointment.  And I wonder if they really forgot something they have done every day faithfully up until that point.  Did they actually not know the ingredients of that food when they read all labels diligently?  Or are they deliberately sabotaging their child in order to gain more assistance?  And would I do the same?

It seems to be more and more cut-throat out there.  Caregivers must constantly advocate for the special needs children in their lives.  My fear is that anything my child is given means that another child with greater support needs might not get helped.  I feel guilty about that.  But on the other hand, anything my child is denied means she may never reach her true potential.  She may have to learn to live with a challenge that she could have overcome if it had been addressed in therapy.  Isn’t it my job to give her the best future possible?

So where do you stand?  Where do you draw the line?  Have you ever sabotaged your child accidently, or on purpose?  It’s okay, your secret is safe with me because I really, truly understand.