Just Dignosed?: A mom's guide to getting through it

So you've just got the diagnosis. Not sure where to go or what to do next? Well I've put together a handy-dandy guide of little tips that will make this process go a little smoother...

1. Take a moment to let the situation sink in, throw yourself a mini pity party if you need to... now get over it.
Preferably as soon as possible because you have a child who needs you. And they need you to be strong. They need you to be advocates for their health. Now more than ever you must show them how important they are to you. How they are valued, cherished, special and loved. Too often because of the symptoms of  Sotos Syndrome our children have to deal with bullying and as a result suffer from poor self-esteem. We as parents have to build their confidence up. Think of it as armor so that when bad things happen they can rely on the parental foundation you set up for them. You can't protect them from everything and everyone but you'd be amazed at what a close relationship with their parents can do for their self-esteem.

2. Realize you are NOT alone.
With a diagnosis as rare as Sotos Syndrome it's easy to think that nobody is going to "get it". I was one of those people who thought that but then I started researching. I joined support groups for parents and people living with Sotos Syndrome and I got to talk to people around the globe. People with children just like mine. Adults with Sotos living a life much like my husband. We shared pictures and advice. Talked about milestones reached and prayed for each other when different medical stuff was needed. It didn't take long to realize my family was not alone. Quite the opposite. We were part of community. A community that transcended countries, races, religions, political parties and economic statuses. We were all parents joined by the same thing: Love for our children. There was a genuine support there and we all cared about each other. And in that lies the blessing of Sotos Syndrome: the bringing together of so many people we would have never known otherwise to help celebrate our children and our lives.

3. Invest in a notebook and daily agenda.
I'll tell you now you are going to need it. There is going to be lots of doctors, lots of appointments, perhaps lots of medications, medical bills, insurance claims and you are going to need to be organized. Our children often see lots of different specialists at different locations.I've found that writing everything down helps because it is very easy to get overwhelmed otherwise.

4. Prepare yourself for the great insurance fight.
I don't know about other countries, but in the States our insurance is a huge, but necessary hassle. My biggest suggestion to you is to call your insurance company every time you get a bill. Call on everything. Hospitals are notorious for overcharging, charging exorbitant amounts of money for little things like aspirins, or honest mistakes. Study your insurance plan like you would an exam and then talk to the hospitals about how to go about paying for services that aren't covered by your provider. Find out which hospitals are the most flexible with payment plans and then, if feasible take your children there. Unfortunately, our children often have a lot of health concerns and doctor bills can add up quickly. So the best course of action is to be proactive... trust me, I learned the hard way.

5. Decide how, who, when and if you are going to tell your child or others about Sotos Syndrome.
This is an intensely personal decision and you must weigh the benefits and consequences of letting people and your child know about Sotos Syndrome on your own. Some parents of higher functioning Sotos children choose not to let their children know. My in-laws did that with my husband and I must say there is something to be said for that approach since my husband is an amazing byproduct of that approach. He's got a college degree, great job and a family that adores him. That being said I will be telling Natalie of her condition. But I will not let her be labeled by it. She is Natalie first, our beautiful daughter 2nd, a whole lot of other things in between, and a Sotos child after that. Ultimately the choice is yours.

6. Get your child involved in early intervention programs as soon as possible.
Once again this is a personal decision. However I will say from experience EVERY resource you can get your child helps. I have my daughter involved in a program called First Steps where a physical therapist comes out every week and works with Natalie on her gross motor delays. Some people elect not to accept early intervention programs for various reasons (some times more than others because they don't want to believe there is anything that needs help- I was one of those people too until I agreed to enroll Natalie in first steps and now I can't deny the tremendous help it has been to Natalie's development). I learned I had to suck it up realize that my daughter needed help. Help I couldn't give her on my own. My daughters health and development is more important than my pride in being a parent who knew all about my child and could fix everything on my own.

7. Find the right doctors.
You're going to be seeing them a lot. Make sure they are people you can be comfortable around and that they know what they're doing and that they know about your child. They need to be the type who are proactive and well versed in your child's needs.

8. Enjoy life
You only get one chance to be a parent to your child. One chance to watch them grow. Don't blow it by being sorry for yourself, your child or your situation. Every minute you spend wallowing in self pity, worry or doubt is a minute you could have spent making your child smile. And let me tell you, there is nothing like a child's smile...You can break down later but this time right now belongs to your children so let them see your strength and rely on it. Go places, do things. They may or may not be able to do all the things you used to as a child but don't let that stop you or them from LIVING. Play games together, go on walks, visit zoos, talk about things that interest them, go on vacations. Surround yourself with people that you love that love you and your child back and cherish all the little things that make your life unique. Remember happiness is a choice and children have a knack of watching all the choices you make. So make sure the choices you make are the ones you wouldn't mind them imitating.