"It can be a lonely, frustrating place as a mom of a special
needs child. But the best way to get through it is to find a team
of trusted people who are your support network. ... Assemble a team
of people who approach the situation with the same mindset you
have. Don't be afraid to tweak the group until you feel
comfortable-everyone I know has "fired" a resource person who
didn't approach their child in the way that made them
Laura McGowan, Aurora
"Being the parent of a special needs child forces you to ride
the special parent see-saw. It's like riding a bull for the first
time with no instruction. Some days you are up so high that your
feet are lifted clear off the ground and others you find your feet
dragging down in the mud. No matter what your child's special need
may be, the see-saw ride is quite a challenging one. You have to
hang on for dear life, hang on to your child, hang on to your
spouse and the rest of your family."
Walter Burden, Palos Heights
There is no handbook. We just deal with what's given to us on a
daily basis. Having a child with special needs and a "typical
child" is hard. For the most part, our son with Down syndrome needs
the same things as any other child: love, patience and
Jayme Rybka, Frankfort
My biggest tip would be to have a sense of humor, and if you're 10
minutes late for the dentist, it's not the end of the world. (That
cavity will still be there, I promise!)
The important thing for our family is to set aside time for each
of our three children. Dinner, shopping or breakfast alone can make
a world of difference. We also talk to them about what is going on.
It's important that they know and understand that the 'special'
treatment they feel Sadie is getting isn't 'special,' it's just
'adjusted'. They are so young right now that it's hard for them to
understand, but eventually they will, and hopefully they will
appreciate the effort we put in to make our family cohesive and
full of love.
Mary Edgar, Wheaton
We are a laid back family and I think our son is laid back because
of it. I try not to sweat the small stuff. Our son is 12 years old
and has come a long way.
I always told people that I feel very blessed to have a child
with autism. He is so special to us and helps us see things in a
totally different way. So he's a little quirky or odd and likes to
script cartoon episodes, sing rap music and jump around thinking
he's a hip-hop dancer. As long as he is happy, that's all that
matters to us! We love him to pieces!
Lisa Morgan, Plainfield
My two sons are only 2½ years apart in age, but developmentally,
they're 7 years apart. Family outings can be very stressful. Our
older son (typically developing) becomes frustrated at the
excruciatingly slow pace we have to take at museums, parks, etc.,
to accommodate the needs of his brother, who is hearing impaired
and has a Mitochondrial Disorder.
Our solution is to "divide and conquer." We stick together for
the first half hour, then split up until lunch, each taking one
boy. We switch kids after lunch and meet up again at the end of the
day. It makes for a more balanced day with quality time together
and with each boy.
Carrie Capes, Maple Park
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