Lately, I have found myself focusing on self-care because my family is in a period of transition. By making sure I take time for myself it is helping me refocus and be better able to meet the needs of my family.
One of my favorite ways to practice self-care is through movement. I dance. I run. I jump. I stretch. No movement is too small or too big for me to attempt. Which brings me to what I am so very thankful for every day.
I can MOVE!
I can completely control my body movements. When my brain sends a command to my legs to leap, they listen, and I leap. Maybe not with the graceful fluidity of a professional dancer, but I leap. If I need to walk or run, my legs propel me forward.
During a PoundFit class, I channel my inner Rick Allen from Def Leppard while I beat the floor with my rip sticks. Movement brings me so much joy simply because I can move.
I once had an instructor comment on how much I move while we are in class and that I never seem to stop. We talked a bit more and the conversation turned towards my inspiration, which is Evie…big surprise right? I shared how Rett Syndrome has taken the ability for her to control her own body movements and that even the simplest action, like holding a cup, takes extraordinary effort on her part.
That even when she seems to struggle to place one foot in front of the other, she keeps trying and pushing herself to keep moving forward. Her perseverance and determination has brought perspective to my life and made me grateful for my mobility.
I want to encourage you all to find joy in the movement. It doesn’t have to be running a half marathon, even though we’d love to have you join Team GP2C, it can be something little. Go for that walk. Take a class with a friend: I highly recommend Sh’Bam, BodyTone, or PoundFit. Try something new, like belly dancing or hiking. Just get out there and move.
We never know what tomorrow will bring into our lives and taking time for yourself may be just what you need to rejuvenate your body and mind for what might lie just around the river bend (yeah, I’m a Disney geek).
The holidays are filled with family, friends, fun and laughter. Its a time where one may re-connect with those around them to celebrate the season and all that they have to be thankful for. In the case of a family with a special needs child, all of these things still remain true. But, this time of year comes with a little “extra” to consider when attending the many festivities and excitement this season has to offer.
For me, I have always loved the holiday season. There is something in the air that is buzzing with excitement and each day has an over-arching feel of such profound gratitude for all that you have to be thankful for, that you just want to share the joy with everyone you encounter. I may be a little too overzealous for this time of year, but I am ok with that. Festive music starts the first of November!
The get-togethers, family visits, and travelling from place to place are all an adventure, where the biggest stressor is always what are we going to eat and at whose house are we gathering. Once our family got our daughter’s diagnosis of Rett Syndrome, our holidays began to look a little different. We now had many more things to consider.
You see, for our family, we have always been very “go with the flow”. We adapted to every scenario and last minute changes of plans never bothered us. It wasn’t until Evelyn’s regression began and all the changes that it entailed that we began to view holidays differently. We no longer had the mindset of, we are good with whatever plans, everyone else can decide, and we will just show up. It became more of how will these plans play out for Evelyn? Will she get overwhelmed, is she familiar with the environment and will she be able to navigate it confidently, is there a suitable place to let her rest when she needs it, what is our plan of action should the situation become too much for her and we have to leave?
These were all new things we never had to think twice about when she was much younger; when our life seemed more “typical”. We had our bumps in the road trying to navigate what holidays look like for us. We’ve become more vocal if we found that a suggested scenario wouldn’t be the best situation for our girl and we needed to offer alternative options.
There have been times that we have had to leave early if it became too overwhelming for Ev and the hardest part, at least for me, (as someone who is always looking to please others) is having to say “no” to certain things because it would not be the best situation for our girl. We have learned, through much trial and error, that to truly enjoy the holidays, we must have a plan in place to do what would work best for Ev, and our family as a whole.
We choose the situations we bring her into wisely and travel to places where we have some support, if possible. We do not try to do everything and we say no to a lot. We have learned to be content with what our girl is capable of, which at times, is much more than we can handle. We choose situations where we can be outside if we need to take a break, give her space to herself to have some quiet time, and give her an environment that she is comfortable with so that she can socialize to her hearts content.
We no longer try to live up to expectations we had of ourselves to make everything work. We do what we can handle and we find peace and contentment in the rest. The joys are something to be treasured even amidst the challenges that they might bring.
Fire Safety Tips for Families with Special Needs Children
Fire safety is something every family needs to take seriously, and families with special needs children are no exception. There are three basic components for fire safety in the home; planning, teaching, and practice.
First and foremost, ensure that there are working smoke detectors throughout the home and in sleeping spaces. Test them monthly and replace the batteries every six months. Also, have working Carbon monoxide detectors on all levels of your home. Additionally, make sure all bedroom doors are closed at night, this is the safest way to sleep.
Have planned escape routes for your home, including two ways out. If your child has physical limitations, have a plan on how and who is going to move them. Having your child’s bedroom on the first floor will make it easier to remove them if they have to be carried or dragged. This website has a wonderful video that explains how to get an immobile child out of the house in a fire: www.safekids.org/video/fire-safety-families-children-who-are-immobile.
Teach your children how to feel the door and door knob to see if it’s hot before leaving their room during a fire. If the door is hot they should stay in their room. Also, explain to them that during a fire the smoke may become very thick making it hard for them to see, and show them how to crawl to safety. Finally, teach their siblings how to call for help (dial 911) once they are safely out of the home. Your Rett child may not be capable of doing any of these tasks; however, it is important that these things are explained to them to lessen anxiety should a fire occur.
Just like in school, your family should practice the escape plan monthly – know who is going to be responsible with assisting your child to escape the home, and who will do that job if the primary person is not home. Know where your meeting place is once they are out of the home, and finally, know how to call 911 for help once they are safely out of the home.
It is recommended that you contact your local fire department to determine if they have a program or system that identifies homes and families with special needs. In many fire departments, the dispatch system has computer aided dispatch. Any address where there are special hazards or needs is immediately relayed to responding units. This ensures the responding firefighters are aware of the special needs child in the home, and what type of resources they may need to ensure a positive outcome for all involved.
For additional resources for fire safety tips and planning for children with special needs please visit the following sites:
“Only an aunt can give hugs like a mother, keep secrets like a sister and share love like a friend.” Anonymous
My name is Morgan, and I am honored to be the aunt of 2 unbelievable boys and 2 incredibly amazing girls. I am the oldest of 3 girls (even though everyone thinks I’m the youngest!). One of my beautiful nieces, Quinn, has Rett Syndrome. I own two businesses, but my most favorite job is most definitely being an aunt. The quote above is pretty popular, but it is one of my absolutely favorite quotes ever. I am so honored to be an aunt to all my favorite kiddos, but with Quinn, it’s a little different for me.
I remember the day Quinn was diagnosed like it was yesterday. We knew something was wrong, she was only 15 months old, she had never crawled, tried to walk, we didn’t know what was going on.
The doctors had given my sister, Angie, and my brother, Ryan different ideas of what she could have, but we’d never heard of any of them. Waiting for a diagnosis was horrible, and I hated search engines during that time. We would search what she could have and we cried so much thinking she could leave us at anytime. Especially my sis…I remember telling her to stop looking.
The day Quinn was diagnosed with Rett Syndrome will forever be etched into my memory. My sister, Angie called our parents, me and my husband, Seth, my other sister, Kristin, and her husband and asked us to come over, I immediately knew what it was about. We only lived less than 2 miles away from their house at the time….I cried the whole way.
We all sat upstairs in my nephews huge playroom (most of us sitting on the ground or standing, there was only 2 chairs). Then Angie & Ryan starting explaining everything. None of us had ever even heard of Rett Syndrome! I remember having so many questions that I was so afraid to ask at the time. Not only was Quinn diagnosed, but I knew my sis and brother and even my nephew would never be the same and that they would need help.
At the time, I was not a person that went out of my way to help people, I was (and still am) the kinda “black sheep” of my family, never quite fit in. Both my sisters had jobs that helped people. Angie was a nurse and Kristin was a teacher. Me? After years of jumping from job to job to job, I started my first business, photography. I have severe ADHD, and wasn’t diagnosed until I was around 20, and it’s been a tremendously hard road, and I was selfish. Quinn has changed my life. She made me who I am today, and I don’t think I could ever thank her enough. I am so proud and lucky to be her aunt. If I could cure her or even just help help her I would in a second, no second thoughts.
I literally hurt so bad everyday, crying so much, just trying to find a way to help, and finally,I found my way to help, my own therapy I guess you could say. Spreading awareness about Rett Syndrome and fundraising.
I started just around 3 months after her diagnosis, and now almost 5 ½ years later I’m going stronger than ever. My niece is my life and I will be there when she talks for the first time, when she takes her first step and all her other firsts. I don’t say “if we find a cure” I say “when we find a cure”. I know we will cure Rett Syndrome, and it will be the very first cured neurological disorder.
Just for a second think about all your friends on every social media account you have, then think of the friends that they have that you don’t, and so on. We are talking thousands of people that could be spreading awareness and donating! This is my personal goal. To teach more people to spread awareness. I truly believe social media can do that for us! We can use it to get the funds to cure Rett Syndrome.
Rett Syndrome doesn’t just affect the immediate family, it affects the grandparents, aunts, uncles and pretty much everyone that loves them.
By: Morgan Moses
Thank you Morgan for this beautiful story of how Quinn and Rett Syndrome has changed your life and inspired you to give back! If you would like to share your story about how a Rett child has changed your life please contact Kristin Heilman at Kristin@gp2c.org
We are so excited to continue to highlight an extremely important group of people in our Rett family, our Rett BOYS! Read on to hear Kate and her son Colin’s journey with Rett Syndrome!
What is one piece of advice you would give to a rett mom who is struggling?
Reach out to other parents of children who live with Rett Syndrome. It helps to know that you and your child are not alone.
What would you tell a newly diagnosed family?
Please know that this child will fill your house with love and everyone in your family will be forever changed for the better. This child will teach you so much about resilience, inner strength and human dignity. Be mindful of what you say in front of them. Just like any
other child, they hear what we are saying and absorb it.
How is rett syndrome different in boys than girls?
It isn’t easy for any of them (females or males). However, the majority of the boys are very sick and yet they have to take a back seat to the girls when it comes to the research. This is so hard to accept, because so many of our boys have recently passed away. I don’t want to see another one lost.
What is your Rett Boys favorite activity?
Colin loves car rides with a good view and great tunes! He bops along to songs with a good beat! Who doesn’t?
What has been your biggest struggle so far?
When he becomes frustrated he hits his head with his little fist.
What has brought you the most joy?
So many things! His dancing to the music. His laughing fits. His sassy attitude. His comic timing. When he tries to give you a hug or a kiss. The reaction when Colin see’s his brothers and sister after an absence. They love each other so much.
How do you continue to make time for yourself?
I find the most beautiful place that I can find and take a walk. If I can’t do that, I take Colin for a ride on a scenic road and play some good music. I read when I can. I write when inspired. I drink herbal tea. I buy myself cheap flowers at Trader Joe’s or pick some from outside. I work part time.
What do your Rett Boys goals look like?
My #1 goal for Colin is that he will someday soon, be able to define his very own goals. My goals for him are secondary but I wish he could fully use his hands again, walk with less difficulty and talk with others. I also wish that he wouldn’t feel so frustrated at times.
Thank you so much to Kate and Colin for giving us a glimpse of your lives together. We continue to celebrate ALL of our Rett kiddos and their accomplishments!
We are so excited to continue to highlight an extremely important group of people in our Rett family, our Rett BOYS! Read on to hear Maja and her son Tobias’ journey with Rett Syndrome from Denmark!
What is one piece of advice you would give to a Rett mom who is struggling?
I think we all struggle on/off because Rett does that to you. The feeling of being utterly lost as a parent of a Rett boy comes and goes, and I think it’s very important to know that it is perfectly okay to struggle. Just breathe and feel all the feelings running through your heart.
What would you tell a newly diagnosed family?
My boy Tobias, who is turning 11 in March, got his diagnosis last year so I still am not even sure what to tell myself. I’m the kind of person who went online and looked at all articles regarding Rett. I broke down and cried for days. Much of the information you find out on the web about boys with Rett is very doom and gloom. I think it’s because it’s a very small community and there’s not enough organizations out there talking or sharing about our boys with Rett. I read early on that “most boys with Rett live a very short life.” I highly recommend to not give into that or believe it. The most important is to get out there and learn everything you can and care for your son the best way you can and know how to. It’s important to know too that it is perfectly fine to feel some anxiety about the future. You can’t let those feelings take over though. We have to understand that every child with Rett is different, unique in his or her own way and it’s important to know you’re not alone. Our Tobias has brought our entire family unbelievable joy and it’s our job, our duty to care for him the best way we can and that starts with getting quality education about how to help care for him.
How is Rett syndrome different in boys than girls?
This is a very difficult question to answer without sounding as if we are competing with which gender suffers the most but I can share that what I’ve learned is often the boys are much more medically fragile than girls, not in every case though. Since girls are born with two X-chromosomes, it’s possible that 50% of their cells are impacted whereas boys only have one X-chromosome, so typically their cells are impacted at 100% but then there are the mosaic Rett mutations.
What is your Rett boy’s favorite activity?
Tobias is a big fan of cartoons such as Kung Fu Panda, Happy Feet, Madagascar, etc. He wants his cartoons to be a bit wild and not too baby-like. I know he feels safe and at ease when he watches TV, but I do admit, I wish we could focus on some other activities besides television. He also loves to eat but who doesn’t? Ha Ha! What has been your biggest struggle so far?
Our biggest struggle I think has been ensuring he receives the care he deserves. We live in Denmark and I know that from the viewpoint of the world we may appear to be privileged when it comes to healthcare in comparison to other countries with such things as hospital visits, medication, therapy expenses, etc. but since Tobias just received the Rett diagnosis last year, we have really had to fight the system to make them understand my boy and his needs. Another major struggle is a mix of many things. The other is that Tobias is not very social and does not care to be in large crowds or where there are many people gathered. He can become physically sick if I take him somewhere he hasn’t been before, so our world is very small and frankly, it can become quite lonely – especially since I’m a single mother.
What has brought you the most joy?
Tobias’ smile is incredible. He brings us so much joy. There are so many things that Rett Syndrome has robbed Tobias of but I must admit that I do try to focus on the good things. Like how he uses his eyes to communicate with us and can suddenly laugh out loud. To hear him laugh puts a smile on my face every single time.
How do you continue to make time for yourself?
Time for myself? What is that? Ha Ha! As a single mother to a son with Rett, I must say I don’t have a lot of time for myself. Tobias usually spends once a week at my parent’s place and that’s the time I use to unplug a little. It’s not a lot but does give me a bit of time to recharge and regroup where I need to.
What do your Rett boys goals look like?
I like to just focus on the present but of course there are things I really want for Tobias. So I try with ‘smaller’ goals. The last one I had was to get him to work on sleeping in his own bed and it happened! He recently has improved in some fine motor skill with holding his fork when he eats, something we’ve been working on and now we’ll keep building upon. A larger goal we have is to create more awareness about Rett Syndrome and what boys with Rett go through. Maybe we’ll end up finding others out there that need more information or education and I can help encourage them along the way. This year I plan to host an event to support Rett Syndrome research in Denmark. I want the world to know all about my wonderful son and the incredible possibilities for an amazing future we have hope for!
The miles may separate us, we may have boys or girls, we struggle with health concerns, physical issues, educational problems or maybe even all of the above, we have differences for sure but one thing that brought us all together is Rett Syndrome. Someone one said that this is the best club you never wanted to join and we would agree.