Thoughts, comments, insights

Ten Pieces of Advice for Newly Diagnosed Families

March 18, 2020

Ten Pieces of Advice for Newly Diagnosed Families

The ASF Family Champions are a group of AS parents who volunteer to contact or be contacted by other AS families when they have questions, need advice, are looking for families that live nearby or want to vent about or celebrate something only another Angelman parent would understand. 

We asked the ASF Family Champions for advice they share with Newly Diagnosed parents. Not too surprisingly, many of their responses were about similar topics. Here are the 10 topics and the advice to go with it.  (Our personal favorite is #7.)

 

1. Your Angel might be more “typical” than you think.

Keep the bar high for your child (your bar and the “professionals’” bar). You can always lower it if needed. Our children with AS NEED to reach their very highest maximum potential.
Robin Wilkerson

 

Your child WILL meet milestones and have AWESOME progress! Just in their own unique and perfect way & time.
Sarah Cobb

 

Your child is smart and there is so much they can and will do. We just have to rethink the way it looks.
Sarah Cobb

 

Angelman syndrome is just a part of your child, but it does not define who they are. They still have their own special, personalities, quirks, strengths & weaknesses, and unique gifts to share with the world, just like any other person.
Sarah Cobb

 

You may worry that your Angel is going to be limited in life….then one day you’ll realize in a single week your Angel has ridden a horse (hippotherapy), gone swimming (aqua therapy), had a music session, made a work of art and eaten a whole array of different foods….or in other words they have a more diverse set of enriching experiences then you ever could have hoped for in your own childhood! 
Steve Mastrocola

 

Raising a teenage angel daughter is quite similar to raising my non-angel teenage daughters-they like to sleep in, wear make-up, fix their hair, use bath bombs, talk to cute boys, wear leggings, and play on their electronics…
Katie Kilcullen

 

Without words, our angels impact individual lives in beautiful ways I never dreamed
Katie Killcullen

 

Relationships matter, especially relationships our angels make throughout their school years
Katie Kilcullen

 

2. Be Proactive.

Apply for Medicaid ASAP. Apply for Social Security or Supplemental Security Income as soon as possible, given your situation. Apply for any waivers ASAP. Go ahead and get on the waiting list(s)–DO NOT WAIT for any reason…including that you don’t need the support right now.
Robin Wilkerson

 

Start toilet training, communication, academics, working on activities of daily living (like dressing, etc.), etc. before you think your child is ready–don’t wait until you think your child is ready or until “professionals” think the child is ready.
Robin Wilkerson

 

Starting AAC and modeling early is so important. ‘Typical’ children learn to talk by hearing us speak to them; our Angels will learn to use AAC to communicate in the same way- by watching you using it to talk to them. Your child is already understanding far more then they can express.
Sarah Cobb

 

ABA therapy! (Applied Behavior Analysis – techniques for understanding and changing behavior)  If our geneticist didn’t refer us to ABA, I wouldn’t have known about it.  
Vee Patel

 

Keto diet and Low-Glycemic diet.  Start either diet ASAP once diagnosed to help prevent seizures instead of doing it after the child has experienced a seizure.  
Vee Patel

 

Just because someone is a doctor and they recommend something to you doesn’t mean you have to do it.  No one knows what is best for your Angel more than you do, and unfortunately you will often know more about Angelman syndrome than members of your Angel’s medical team.  Listen to your head and your heart, and don’t be too shy to ask other Angel families for help or to visit an Angelman Clinic when you are struggling with an important medical decision and need advice.
Steve Mastrocola

 

Fight for inclusion.
Katie Kilcullen

 

3. Find Support. Make Connections.

Ask for help.
Robin Wilkerson

 

Join support groups! The [Angelman journey] is the road less traveled and there are times it can get a bit lonely and overwhelming, but there are so many amazing groups out there with people who truly get it & have a wealth of knowledge to share. Support is out there in whatever way is right for you.
Facebook groups I’ve found most helpful:

  • Angelman Syndrome Foundation
  • Angelman Connections
  • AAC through Model, Motivate, Move out of the way
  • Massachusetts Angelman Connections (when I lived in FL there was also statewide FB Angelman group)
  • Grafton MA parents of children with special needs (I’m guessing most communities have some kind of local page)

A tip: set your FB settings so that posts from these don’t go right into your newsfeed. It can feel like a lot of overwhelming info in the beginning. This way, you can look at it when you choose, and you aren’t bombarded with it the minute you open up Facebook. Later I set it so that I get notifications when my friends post in the groups.

In person support groups:

  • Special education parent advisory council (through the school district)

These groups can be great for seeking answers to questions, connecting with parents, and just feeling part of a community.
Sarah Cobb

 

There so much to be hopeful for! Organizations like the ASF fight for our angels and families like ours every day. They offer a wealth of support, knowledge and resources through all ages and stages. Their website is full of helpful info or a quick email or phone call, can help with whatever you need. There is also incredible research and clinic trials starting this year! The future has never looked more bright and hopeful for our little ones.
Sarah Cobb

 

There is a whole world of Angelman families out there that has been in your shoes, wants to help you and wants to get to know you and your angel!  We want to share our knowledge with you to help speed your learning curve, we want to share our successes with you to help you replicate them and we want to hear about what works for your angel so we can try and replicate it with our angels.
Steve Mastrocola

 

Looking for “angel” friends?  Attend an ASF Family Conference, and your life will be forever changed.
Katie Kilcullen

 

4. Recognize the positive and enjoy the experience of being with an Angel.

Angelman syndrome is not always a bad thing. Your child has super powers like their contagious smile and the ability to light up a room. They will charm the socks off those who get to know them and will be deeply loved by many. They will teach you more unconditional love and appreciating the little things than you can ever imagine.
Sarah Cobb

 

Read the essay, ‘Welcome to Holland’ 😊💙  View on Pinterest, and save it to a Board.  Or view an image.
Sarah Cobb

 

Angels never get tired of giving you hugs. A hug from an Angel never gets old and somehow every hug feels just as good as the first one.  
Steve Mastrolola

 

Angels are superheroes who can live a full day on little to no sleep…over and over and over again.
Katie Kilcullen

 

Nothing is better than the laugh of an angel.
Katie Kilcullen

 

 

5. Keep working. Slow and steady. You’ll get there.

It’s a marathon not a sprint.
Robin Wilkerson

 

Work on any behaviors you want or don’t want as they occur. Try your best to encourage or discourage them as they occur. Think about the future with these behaviors. Once the behavior is ingrained it is almost impossible to extinguish. What behaviors do you want your child to have in the future–examples: sleep in his/her own bed, have nice hand/feet/mouth, greet others appropriately (with a smile, wave, handshake), be able to spend time with others besides parents, wait for food in a restaurant, act appropriately in public, etc.
Robin Wilkerson

 

Parents will adjust to unique sleeping habits and patterns…keep trying everything you can . . . something will eventually work, even if it’s temporary…
Katie Kilcullen

 

6. Give yourself credit.

Don’t beat yourself (your spouse, your other children) up. Know that all of you are trying and doing your best in the situation. Know/understand that everyone in the family is not going to be in the same place emotionally when dealing with situations. Each person deals with situations differently and each person might be in a different “stage or phase” of the process. 
Robin Wilkerson

 

Hopefully this isn’t the case, but if you are worried that you did something wrong or somehow caused your child’s diagnosis, well you didn’t.  The fact that you are reading this blog, found the Angelman Syndrome Foundation and have a diagnosis means you are doing a lot right.  Keep up the good work, your Angel is benefiting immensely from your love and dedication!
Steve Mastrocola

 

7. Participate in the ASF Walk

Go to an ASF Walk! This was a life changing experience for us. Meeting other families who are walking the same path, learning about local organizations, and being surrounded by the HOPE at an ASF Walk, was transformative.
Sarah Cobb

 

Support your local ASF Walk and invite friends, family, school people, community people – AWARENESS makes such a difference.
Katie Kilcullen

 

8. Visit a 15Q Clinic

Go to a clinic! The quality of care and level of expertise is like no other. You will learn more than you can imagine. They truly treat the whole child, support the family and empower you by giving you all the info and recommendations you need to ensure the best services and treatment for your child. After visiting a clinic, for the first time since diagnosis I felt like we COULD do this.
Sarah Cobb

 

You may wonder if it’s really worth the time and effort to visit an Angelman clinic, well it is definitely worth it and it’s way easier, quicker and more helpful than you can possibly imagine!
Steve Mastrocola

 

9. Think about and plan for the future

Stay in the present/day to day but keep the future in mind as you always need to be planning ahead for the next steps.
Robin Wilkerson

 

10. And a couple other things . . .

Many children with Angelman syndrome have Cortical Visual Impairment (CVI). It presents a bit differently in children with AS and can go undiagnosed for a long time. Logan wasn’t diagnosed until he was 4, almost 5 which means he didn’t receive early intervention services in this area. If you notice anything ‘off’ or questionable with vision, ask about CVI.
Sarah Cobb

 

Chronic sorrow is real. You can work through it as long as you acknowledge it is happening to you.
Robin Wilkerson

 

It is important to spend quality time with your spouse/significant other and your other children–both as a family and individually. Every member of the family is important.
Robin Wilkerson