Aidan's Story

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It Takes A Village

“It takes a village” is the old saying about raising a child. This can't be more true than when raising a child with special needs.

Being able to talk with someone who understands the trials and tribulations can help a parent with both their mental and physical state immensely. But when someone understands the celebrations of goals your child achieves, no matter how small it may seem, it means so much more.

Our family found this out first hand when our son was born a little more than 11 years ago in distress. He was given less than a 10% chance of surviving but after spending only 10 days in NICU he got to come home. At the time, we did not know where the road we call life would be taking us.

At just 3 months old, we knew the road was going to be bumpy so we just buckled up and started moving forward. At 5 months with no diagnosis, our son started in both physical and occupational therapies three times a week. While talking to the therapists and other families in the office, I realized how therapeutic it was to talk to people who understood a bit about what we were going through. Two more months passed before we were given a diagnosis of Cerebral Palsy.  It was another 2 months before we found out that our son had a stroke at birth which caused the damage to his brain. This was devastating news for us and thus the search for help started.

When you find out your child has special needs, you can't help but feel alone. Very alone. So very alone. But you are not alone. You just need to seek out help and companionship from parents who share  those needs. Sometimes this can be difficult because some parents choose to be silent about their child's special needs or their lives.  One way to connect is finding LISTSERVES and online support groups which can provide a plethora of information because you are able to connect with so many families with the same diagnoses from so many different places. Each person can contribute so much insight about their child's needs, obstacles and endeavors.

It is especially nice to connect with families that are more local to your area. It is helpful to connect with parents who may be familiar with a particular doctor or medical facility and can tell you their experiences. They can also offer great insight to the adaptive activities that are available in your area. Our kids do not always get the same opportunities to participate in typical children activities because of physical or cognitive delays but they long for and need to feel connected this way with peers. Getting input from parents is how we were able to get our son enrolled in adaptive activities such as therapeutic horse riding, soccer, baseball, and gymnastics.  Through friends in other states we were also able to connect with a special needs surfing program which we have participated in several times. Opening these doors for our kids can lead to better self-esteem, physical stamina and balance, better social skills…the list can be endless. We attribute our son’s success to providing him these activities to participate in from a very young age. (Continued on back)

Finding local families with needs similar to your family's needs is sometimes not that easy.  Rural areas can make it particularly difficult to connect to families with needs similar to yours.  The Family Support Network can be the operator that opens that line of communication between families.

Talking with school personnel, exceptional education teachers, therapists, counselors, etc. can also offer an abundance of information about opportunities for your child. This is how we found out that while our son was home-bound recuperating from major surgery, he could still participate in his classes and school activities by using Skype from home. They set up a computer with a camera in the classroom while we used one at home. He was able to continue with his schooling with his class while at home. This made a huge difference with the lack of socialization one has while home-bound and helped him feel included.

Over the last 11 years we have been down many different roads with many different diagnoses for our son. We have always sought out help from other parents and families and it truly has made a difference in the way we parent. We have been told to ignore the doctor's grim prognosis of our son's life and to keep pushing and striving and he will go far. So far he has proven the doctors wrong by doing all the things we were told he would probably never do and we have to thank all the families that have helped and continue to help us through this bumpy road we call life. 

 

Mindy Hauser

 

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