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Family Forum: Handling Children with Special Needs

There's a lot of juggling involved when you're caring for someone with special needs.

The motto at my house is "keep moving" and for parents of special needs kids, it's often just a way of life.

Fortunately for those of us living in this area, there's a wealth of resources, doctors, services and activities for our "special" kids.  With friends around the country, I've learned that not every area has as much to offer along this line as our community.  But of course all that being available keeps us running.

It's a rare week that my 11-year-old son doesn't have at least two medical appointments. Sometimes it can be two on one day; sometimes as many as five in a week. Prescription drop off or pick ups, eye glass repairs, palate expander adjustments, occupational or speech therapy are just some of the many things that need to be taken care of.

Some days I think I'm surely going to show up at the wrong place at the wrong time with the wrong child and when I talk to other special needs moms, it's the same -- constantly coordinating and changing appointments and trying to make things as "typical" for our kids as possible. Danny was invited to someone's house on Thursday?  Let's change that orthodontist appointment.  Samantha needs to stay after school for extra help. Gotta re-schedule the neurologist.  School psychologist needs to meet with me? Can't make occupational therapy this week.

Special needs parents often have a hard time working a full-time job because of the time involved in managing a child's care. Phone calls and meetings regarding individualized education plans, medication management involving doctor and pharmacy visits, monitoring blood or special diets, it all takes time.

Claire Dumont of Garden City juggles two part-time jobs in order to be home afternoons for her 14-year-old autistic son.  

"If it wasn't me, it would be a babysitter and it would have to be someone specially trained in sign language and behavior," Dumont explained. "Sometimes if he's having a bad day I might have to get him at school early. He has a lot of doctor appointments and there's no way I could stay on top of everything if I didn't get home until 6 or 7 p.m."

Because things can sometimes be a little more difficult for our children, we parents tend to look for things they can have a say or a choice in, and that often means more demands on our time and energy.  We rely on friends a lot for transportation, sharing what works and what doesn't and for when we just need a break.  

Alexandra Zendrian April 13, 2011 at 04:06 PM
I can only imagine how difficult it must be to manage all of these different appointments, procedures, et cetera. Are there groups in the area that anyone would recommend that help special needs children and their families?
Cindy Springsteen April 13, 2011 at 04:27 PM
I agree with you Alexandria, I know how difficult it is to keep up with my children's schedules as it is and I can't imagine how much harder that must be for parent's with special needs children. They definately need a good support system. A good friend of mine has a special needs network, you can find out more at http://www.facebook.com/snappinministries. I know she does wonderful work and is a very sweet person to talk to about any problems that special needs parents are faced with.
Alexandra Zendrian April 13, 2011 at 04:32 PM
Thanks Cindy, I appreciate that suggestion.
Adina Genn (Editor) April 13, 2011 at 05:29 PM
Great topic. When you see people out and about, you don't necessarily realize how much effort and juggling it took to get from Point A to Point B. These parents, and their children, deserve a lot of credit.
Safia Sattaur April 13, 2011 at 05:32 PM
My heart goes out to parents of "special" need kids. Being a parent of a "normal" child can be challenging as it is let alone having to care for one with so many demands. I agree with Cindy, joining a support group or network of other parents with similar situations can be helpful. I know it may be difficult and may seem unimportant but taking time out for yourself is just as important. We as parents need to take those moments out to recharge our batteries which will help us to be better, less tense parents.
Cindy Springsteen April 13, 2011 at 05:40 PM
Absolutely Safia! Many parents have problems asking for help, even those without special needs, but it is important to all parents to have a break once in a while. Asking for help is not a bad thing at all.
Alexandra Zendrian April 13, 2011 at 06:15 PM
I agree with Safia and Cindy that taking care of yourself as a parent or caregiver is incredibly important when you have children.
aileen April 16, 2011 at 09:04 PM
My sister is Downs Syndrome and my mother has been her primary care giver for 26 years. She has had some serious health concerns and has always lived at home. I have seen first hand how exhausting full time caregiving can be. I have also seen the unbelievable love and joy that a special needs person can bring to the lives of those around them. My mother has built up a serious network of volunteers to assist the special needs community in her area [in Ireland]. My sister has known these 'volunteers' for over 20 years and sees them as friends. My mother is now almost 70 and needs this network more than ever. It is fantastic for her to have a few hours to herself each week to get her hair done or shop or whatever. She can go with peace of mind as she knows that Aisling is happy and well cared for and that the respite is at no cost. I would love to join such a group. Is there one in this area?

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