As a Parent of a Special Needs Child
What Prognosis Can I Expect?
As a parent of a special needs child, you know the uphill battle your child will face. The initial prognosis for your special needs child can be grim.
You want the best life possible for your child, but what can be done to help him or her?
Is there any hope?
When our son was diagnosed with
and microcephaly at 4 months old, we were crushed.
Our son's prognosis
was very grim. We were told that he had massive brain damage. He would never be able to do anything. He would probably never even know who we were. His life expectancy would be short.
Click here for more on the life expectancy of a cerebral palsy child.
Our son was deemed to have 'failure to thrive' cerebral palsy. They told us to simply take him home and love him (which of course we would), but there was no hope for him.
If we simply accepted what the doctors told us, they probably would have been right. He would have been held by us all the time, we would love him, but we wouldn't expect any response from him.
Why bother even talking to him if he can't understand us? Can't do anything? If he won't know who we are?
If we had accepted the doctors' prognosis, we are convinced our son would have withered and died due to lack of stimulation and lack of motivation.
We didn't accept that prognosis, probably because it was so hopeless. When you are told that your son will never know you, that he will essentially be a vegetable, you don't have many choices.
Our son was so injured, that we had to search for answers. Otherwise he really would be able to do nothing. If his brain injury was less severe, the prognosis wouldn't have been so severe, and we probably would have just made the best of it in the existing traditional system.
But, that wasn't an option for us. We had to find answers.
Over the past six years, we found hope.
It took us at least a year after his
before we could even believe that it was possible to help him.
Eventually, along this journey, we found joy, and yes, through a lot of hard work and
we found our son.
He continues to improve every day. He is brilliant. He sees. He reads. He communicates deep thoughts to us. He is healthy. He is thriving. His structure is improving. And, yes, he definitely knows who we are, as well as everyone else that he comes into contact with!
We believe that our son will one day be well. That is the goal we are working towards. Even if we don't reach it, at least we aimed high enough to give him that chance.
It takes a complete shift in how you see your special needs child, but your child's prognosis does not have to be grim.
First, don't believe the grim diagnosis or prognosis. As the parent of a special needs child, it is up to you to believe in your child and their future.
Click here for more information on the cerebral palsy prognosis.
Many children with brain injuries are brilliant. Do not let anyone tell you differently about your special needs child!
You probably already know your child is smart. You can see it in their eyes. Unfortunately too many others in our world will tell you otherwise.
They can't see it. Don't believe them.
Second, don't be limited by the
diagnosis for your special needs child.
Whether it is a
cerebral palsy diagnosis,
down syndrome diagnosis, or autism diagnosis, don't accept the lie that kids with a certain diagnosis will never do certain things in life.
The underlying problem in all these cases is damage to the brain.
The only way you can effectively help your child get better is to treat the brain injury. Fortunately it can be done.
Third, with any brain injury, including cerebral palsy, early intervention
is critical. The sooner you start treating the brain, the better your child's chances to respond to the parent driven therapies.
Many traditional therapies will often just focus on symptoms - stretching arms, etc. Attempting to treat the symptoms will not result in prolonged improvement.
Although it is better to start sooner, it is never too late for a parent of a special needs child to begin working diligently with their child.
Regardless of age, with effective treatment, a brain injured child can benefit immensely.
Click here to learn more about early intervention for a child with cerebral palsy.
We regret that we wasted precious time and money when our son was very young trying to find the cause of our son's brain injury and doing traditional therapies that did little to improve his function. Once we did start to treat his brain injury and related problems, we started to see wonderful improvements in his development and health, including nutrition, vision, sensation, mobility, and breathing.
A grim prognosis can be self-fulfilling if you let it.
Instead, aim high! If you are willing to work with your child in an intelligent way and perform parent-driven therapies that treat the brain injury, you will see results. We did.
Now, instead of the sadness of our son's prognosis, we know the joy of finding hope and seeing our 6 year old on the road to wellness. Being the parent of our special needs child is a blessing to us every day.
What if your child isn't as severely brain injured as ours? Does the information that we have learned still apply? We think so.
Regardless of the severity of the brain damage, it is still a brain injury. To get better, you must treat that brain injury, not just the symptoms.
But above all, don't despair. There is hope.
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