Sunday, April 10th, 2016

Advice from a special needs mom to other parents

I am sure that many of you either know of a parent of a special need child or are one yourself.  I have tried my best to understand the wide spectrum that exists under the words “special needs”.  The best thing that I have done is to speak to parents who are open and wanting the rest of the world to understand what they go through on a daily basis.   I recently asked one mom if she would be willing to share her thoughts and advice on being a parent of children with special needs and what would she tell other parents going through the same thing. Below is her response verbatim.   I know this is longer than my regular blog posts – but trust me, everyone should take a few minutes and read this.


1.- Join a support group. Whether it is a local support group or a social media support group. Because, let’s face it, we live surrounded by neurotypical children and their families. We all believe that we are not making comparisons, but deep inside the brain, in some hidden unconscious place the comparisons are happening… we need to remove that “normal” baseline as often as possible, and remind ourselves that we are not alone in this journey.  Plus, support groups can be a great source of information.
2.- Read. Learn as much as you can about your child’s condition. This will help you understand their world much better, set the right limits and goals, and advocate for them with confidence. When my oldest one got his evaluation results I was a full time working mom with a  4-year-old and a 11-month-old. Reading was close to impossible. I read one book, but was it the right one. I revisited the book when the youngest one got his evaluation. My life is in a different place now and reading is easier for me. I continue to read and learn more about their old and new diagnosis. But I get it, finding the time to read and the access to the books can be hard some times. I also listen to videos (TED, youtube) on my cellphone while driving to work and take five minutes here and there to read a short article or check my social media support groups. Stay informed and on top of things.
3.- Find those other parents.  As a mom of children with invisible disabilities I’ve got a lot of eye rolling and shocked expressions from other parents. You don’t need those… But those other parents…The parents of neurotypical children who think that your kid is awesome. The mom who says “I think he is so polite and smart, and you guys are doing an amazing job” and you know she is being honest. The dad who sees your son trotting through the house on his hands and feet and says “Wow! That is so awesome! He is so good at doing THAT!”. In a two hour play date they see their strengths so much more than their challenges… and you need those comments because when you have been there all day, day after day, in the mist of it you may lose that perspective. Those parents and their kids are invaluable.
 4.-Take no-thank-you-bites. Don’t be afraid to try new things, but be ready to quit if needed. We pressure our kids to not be quitters, but sometimes quitting is not just ok, it is necessary. In a family outing or vacation, the ideal situation is to quit just one minute before they hit the sensory overload, meltdown stage. Sometimes is better to try to avoid the situation all together, but sometimes it is good to push your child just a little bit out of their comfort zone.  The same goes for after school activities. We tried soccer and gymnastics for a few weeks, T-ball was a one-and-a-half practice session thing… Swimming? That one hit home.  Learning to read the signs of when is time to quit takes time. There is no manual, you just have to get to know your child. We get it wrong many times before we start getting it right. Because of that…
5.- Do the “self-care” thing, including forgiveness. Forgive yourself and others, and move on with a lesson learned. Embrace the five minute self-care choices out there. Get yourself a cup of tea, read two pages of your favorite book, call a friend… just do something that you enjoy, as simple as it may be, and write a mental note-to-self: “I’m enjoying this”.
6.- Make your partner a true partner. I think this is actually from “Lean In” but it applies here just as well. My husband knows when I am my wits’ end and he takes over, and the other way around. In a family outing, a trip to the supermarket, the farm… we split the work, “I’ll keep an eye on kid number one, you watch kid number two”. The buddy system works.  We both can read the signs of when it’s time to quit. We have both gone down this path together. Communication is key.
7.- Be thankful. I am thankful for a bazillion things: I am thankful for the other moms who post in the support group, for those people who took the time to write books about these invisible disabilities, for our school district, teachers and especial education team, for all the help that we are getting, for being able to write these lines after 8+ years of learning from and with my wonderful especial kids.
I really do hope that the 7 points above has either opened your mind and you have gained more insight into this world.  If you are a special needs parent, I really think the holistic approach of being thankful, making your partner a true partner and focusing on self-care is great advice.
To my friend – thank you for your time for sharing this…