Welcome to Living Special Needs

On Wednesday September 5th 2007 at 11:30am (to be specific) I learned that my daughter had a rare genetic syndrome called Smith-Magenis Syndrome (SMS).

I had never heard of this diagnosis before and when a life-changing event occurs it is remarkably easy to remember every single detail of that moment. I first remember feeling scared and profoundly alone.

My fright/flight response was in full force and I was trying to figure out how I could flee from this devastating situation yet at the same time there was a part of me that was preparing to fight against whatever was ahead of me.

Here I am now, almost a decade later, and I am living it, surviving it, and honestly I am thriving.  I feel ready to help you do the same. Living special needs is not easy but together we can figure out how you can do it too.

The first and most important thing you can do is to allow yourself to grieve. Cry hard and cry often.  It is cleansing to both the mind and soul.

Choose your closest and most trusted friend to do this with because there will come a time when you prefer that others do not remember you this way.  You have a very long road ahead of you and will need to be perceived as strong for both your child and family.

Protect your vulnerabilities. Once you have experienced the first (because there will be more) round of crying, then start talking.  Talk to anyone who will listen.  It will keep your mind busy and your time occupied so that you don’t succumb to the hopeless thoughts that inevitably seep into your head.

Trust me that you want to avoid those dark thoughts until you have at least recovered from the initial shock.  By talking to others you will slowly learn what is needed to begin an action plan.  People love to share their experiences and you can learn from them so listen even if they say things you don’t necessarily want to hear.

The next step involves an overall needs assessment.  This step will be trial and error and may take years to fully fine tune but it is critical to figure out what you need, what your child is going to need, and what the rest of the family will need.

The transition to a life with special needs is rough so an understanding of the needs for all involved will be a priority in your new world. The health and wellness of your core family is vital to surviving this profound detour in your life.

Build your own personal support team.  Determine who will be able to go the distance with you because the road will be long and arduous.  Times will get ugly, they will get messy, and there will be moments when you will want to leave it all behind.  You need someone to make you realize just how strong and powerful you are, not someone saying,  “I can’t even imagine” but someone who says, “get back in there and keep going”.

Now that you have provided a stable foundation on which you and your family can grow, you will become an expert on the diagnosis.  Although you might not believe it, you will find yourself empowered and inspired by how much you have learned about the diagnosis and yourself.  At some point, you will feel like you have choices in your life again.  A new “normal” will appear and with the support of this new life you have built you will begin to venture out into the world again.

The final stage will bring a renewed sense of hope and it has the potential to lead you to many new avenues in your life.  New doors will open for you and you will meet many new and interesting people.  You will learn the true meaning of taking nothing for granted and you will live your life by a new creed.  You will have a genuine appreciation for differences and begin to care about people in a whole new way.  You will experience setbacks along the way (everybody does…) but your emotional and physical strength will surprise you.

As you make your way through your new world make sure you keep this in mind, you are now a warrior.  You have fought long and hard and have not only survived but thrived.  There will be numerous battles along the way but if you stay focused on the important things in life, and avoid getting side tracked by naysayers and self-doubt and pity, I promise you will win the war – the war to live a happy life.