I was inspired to write ‘In The Company of Angels A Compilation of Stories and Poems on Angleman Syndrome, By Those Who Know it Best’ very shortly after our son Conrad was diagnosed at 15 months.” – Pam Lyman 

After the diagnosis I hopped on the internet and started searching for information about this diagnosis that had just rocked our world. What I found was minuscule and very scientific and impersonal. I wanted the human story, I needed to be connected with other parents, family members going through what I was going through. I needed to know that I would eventually come out of the dark hole I was in and know that there was some light in the distance.

As I was discussing the lack of information with my mother in law, she asked me if I had considered writing the book I was looking for. I laughed. A lot. And then I started thinking about it, what would I want the book to look like, what would the feel of it be? I talked to my mom about it who also encouraged me to write it. She said, ‘If you don’t write it, who will?”

So I got to work. I contacted the only two organizations I knew of at the time, CASS (Canadian Angelman Syndrome Society) and the ASF (Angelman Syndrome Foundation) and asked if they would support me in my project. They both responded with an overwhelming YES!

I submitted a letter in each of their online newsletters, outlining my project asking for essays or poems about the raising, loving, struggles and caring of someone with AS. The response was incredible and very humbling. I started getting emails and letters within a few weeks of my letter being posted in their newsletter. What was even more incredible was how those two letters made their way around the world to our global AS community. I was truly humbled and so very excited, as this was clearly a book that was not only needed by me, but by others. People wanted to tell their stores and to help those families with loved ones just getting diagnosed. I can’t tell you how much I was buoyed up by all the words of wisdom, love, grief, pain and joy that were shared with me, a stranger.

What I have learned is that when you have a child with AS you are instantly a member of a huge family. A family that loves to communicate and share in everything going on with their loved one. The successes, diets, potty training, sleeping, seizure advice, education, pj’s anything you need help with you can put it out there and you will get no less than 10+ responses! It is an incredible community. I have also learned to never underestimate someone with AS. Ever. They will surprise you at every turn.

I was fortunate to be blessed with twins after Conrad. Conrad was obsessed with them. He loved to watch them and try as best he could to care for them. He watched them very carefully meet milestones that he hadn’t reached. He learned how to walk and drink from a sippy cup just from watching them. I would watch him intently as he intensely watched them take their first steps. I could see him thinking, “I can do that, I will do that!”  I would watch as he would try to do what they were doing and then do it! He has always been very determined to do what he wants and has always been very successful.

Advice to others. Find a support group and take comfort with them. Whether it be other families raising kids with different needs or AS or family and friends. Surround yourself with people who love you and who want to help you. People that you can trust to care for your child if you need a break. Find a great pediatrician and pediatric neurologist who you can talk to and who will listen to you. Physical and Occupational Therapy is amazing when our kids are little to help them learn how to use their bodies. It is also helpful to us as the parent to know how to help them at home.  I took Conrad to physical therapy and occupational therapy once a week after his diagnosis. He also did hippo therapy – which he HATED!  Early Intervention is also a great resource as soon as your child is old enough.

With all the help that is out there for communication now, figure out what you want to do and start early! We are just now getting Conrad into PODD and he is nearly 12. I wish that we had PODD earlier than now. But I know he can do it.

Take breaks. Get someone to help with the care of your child. You will get exhausted from the constant physical and mental strain of caring for your child. You deserve (and you will need) some time to relax and recharge your batteries.

If you have other children, take time to do things with them that are more difficult or nearly impossible to do with your Angel. My husband and I do this with our other three boys and it helps them to be the star. As much as they love Conrad and are supportive of him it is nice for them to be the stars. It is helpful for them to not have to wait, or be told we can’t do such and such because of Connie. It is hard to leave him behind to do those things but trust me it is worth it and helps your children to know that they are also ‘special’.

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