Empowering our Friends: How You Can Help

When a person first learns their child is going to be a little "different" from the "normal" child, it takes a while to accept and comprehend what that means. As the nights turn into days - yes, that's how it is with Angelman Syndrome - the parents learn more about what it means to be raising a child with Angelman Syndrome.

It means many sleepless nights, it means that your 6-month-old isn't sitting up yet. Your one-year-old still cannot hold his bottle. Your 18-month-old still cannot sit unsupported. Your two-year-old not only has never spoken a word, but you also have not seen him stand up independently, much less walk.

When you have a child with Angelman Syndrome, it is like having a newborn for about a year, and an infant-toddler for 3 more years after that. My son is 5 as of August 2013. So I can't yet make personal comments about anything past this stage. I do feel as though in many ways, my son is growing up, he is seemingly at the preschool-age where he has been walking for about a year, and has said several words, and has several words that are in his vocabulary. "Yeah", "Go" and "Good" are his most commonly spoken words.

So, remember when you (or maybe a friend of yours) had a newborn? Did you experience people bringing meals to you? Did you bring a meal to your friend? Did you ever wish you could just take a shower, sit down to eat, or have a nap (maybe all 3) while someone else helped watch your baby? Did you ever wish for a visitor to come and have "intelligent" adult conversation with you? (Oh, good!! I am glad you have felt this way!) Look up in that paragraph right before this one. The one that says, a child with Angelman Syndrome is like having a newborn for a YEAR. Yeah, I am not exaggerating.

I may even be understating it. So, How can you help? Think back to newborn days.... Sleep is a "hot" commodity. How can you help your friend sleep? Maybe you can offer to come over once a week and do a small chore. wash dishes, fold laundry, vacuum, mow, cook a meal, keep the child safe so the parent can eat, use the toilet or take a shower. Talk to your friend. See what is on their to-do list. Be company. Be compassionate. Listen. Ask questions. Love your friend. Listen.

If you are reading this today, and you know someone who has Angelman Syndrome, go spend some time. Do what you are good at, do something you are comfortable with. If you have uncertainty or are afraid to mess up, just say so. Your friend will likely be very happy that you are making an effort to get to know their child/sibling/relative.

Donate to the medical research and ask your employer if they will match your donation. Share any news you hear about advances made towards the cure for Angelman Syndrome. Share any news you hear about successes regarding a cure for epilepsy. If you hear about a silent auction being held (there is one every December), look at the items online, see if any of them look like great gifts or something you want. See if you have anything that could be donated to the silent auction. Advertise your business in the program at one of the fundraisers. Be a sponsor or volunteer at one of our fundraisers.

If we have something on our Facebook page that has news or information about Angelman Syndrome, read it!! Share it!! Ask us about it!

Participate in awareness events. Wear a denim ribbon on Rare Disease Day (2/28/2014), wear true blue on International Angelman Day (February 15th), and tell people why. Buy shirts, buy bracelets and WEAR THEM - tell people who it is for.

So, I said this was about how you can help. These next few statements are what NOT TO DO. Avoiding these things are good ways to help.
DO NOT:
1)Say you will come over unless you WILL come over. (Headaches, Menstrual Cycles, Pulled Muscles, are not valid reasons to flake on a friend in need.) If you are unsure how to handle this, do not give notice or even discuss plans. Call before you go and tell your friend that you are heading their direction. Leave a voicemail and a text if you do not get an answer. Ask your friend ahead of time, how they want you to handle last-minute drop-ins.
DO NOT:
2) Use the word "retard." Ever. Even if your friend doesn't mind, someone else will. It's just not kind. It is also not accurate for Angelman Syndrome.
DO NOT:
3) Ask when the person with Angelman Syndrome will walk, talk, or be toilet-trained. Basically there is no answer to this. It could be tomorrow, next week, a year from now, anytime between this moment and when there is a cure. There is no point in asking these type of developmental milestone-type questions.
DO NOT:
4) Complain about your child to make us feel better. It doesn't. Your child miraculously met many milestones and likely is able to speak to you about numerous things, and ask you "Why?" a hundred times a day. We would give up a kidney for that.
DO NOT:
5) Brag about things. It's just not kind. When you brag, you are reminding us of what we are missing out on, and believe me - we don't need a reminder. So you may just end up being the one to push us over the edge of sanity when you brag about the awesome new trick your 2-year-old has done.
DO NOT:
6) Give pity. We do not want pity. We want acceptance.
MOST IMPORTANTLY, DO NOT:
7) Disappear. We want people on our side. We want our friends to call us up and act silly or ask for help with whatever it is you used to call us for. We need you now more than ever.

And to close, avoiding these common phrases will also help you maintain a good relationship by avoiding upset. Don't say that your friend is better than you, because you could not do what they do. Don't say God gives babies with special needs to special people. Don't say that God doesn't give us more than we can handle.

Just be with your friend in a healthy way, without judgment and conclusions. I think these are some great things you can do (or not do) to help your friend maintain a connection with you!

Assumptions

When You Lack Data You Make Assumptions

My son cannot speak.
This blog title says Angelman Syndrome is Real.

Using those two bits of data, what do you know, and what do you assume?

What questions do you have?

Please comment.