Archives for April 2016

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.

Start…

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.
End….
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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…
Wednesday, April 6th, 2016

Not everyone is okay even when they say they are…

When you see someone you know the conversation normally goes, “Hi, how are you”,  “Okay” is the response and on we go.   Do we really listen to the answer and give some thought about if the person really is okay especially if they don’t look it.  Or is it more just a part of the busy life we all have and don’t really pay attention?  Let me give you one reason to sometimes stop, look at the person and when they say “I’m okay”  ask yourself, do they really seem okay.

Picking up my son from school I ran into another mom and got into the normal picking up kids conversation  – hello, how are you etc..  Her response was obviously I’m okay.   I looked at her and she seemed anything but okay – she looked completely exhausted – more than us moms usually seem.  We are all juggling so much but she looked weary and drained.  This is not a mom who I would say is a close friend but more just someone I know because of school.   But, I still kind of pushed it a bit and said “are you sure, because you don’t look that okay, you look exhausted”.   She mentioned her son hadn’t been sleeping well and we chatted for not more than 2 minutes when the door opened and kids came streaming out.

dreamstime_xs_34145046Guess what I received the next morning?  A thank you email from her.   Her exact words “I wanted to say thank you…thank you for asking and pressing how I was yesterday. I think we all move so quickly these days, that when someone says, “I’m okay”, we take it for face value and just walk away. Just hitting the surface. Thank you for not walking away :)”.   Turns out she is going through a lot with her little one being diagnosed with a sensory disorder.  I just happen to have a great friend who has 2 kids with the same disorder and has a wealth of information, support groups etc.   After chatting to each of them separately – I introduced them and they are now going to help each other out and share what they’re going through.   I’m not saying I solved a huge problem but by not just accepting the “I’m okay” response,  this mom may have one more person she can now lean on.

Sometimes being a Supermom means we have to look out for those other Supermoms as well.   Letting each other know we are not alone and sometimes taking an extra 10 seconds to really find out if someone is okay or not could make a world of difference.   It doesn’t take a lot to be more mindful, more present and more in the moment!

 

 

Posted by Posted Under: mom conversations
Sunday, April 3rd, 2016

let them play with their toys a little longer….

Our weekend trip to Target always has the kids wanting to look at the toys and negotiate their way through what could they possibly get with their allowance.   Today was slightly different.  As they did their normal walk down the toy aisles, I heard a mom saying “But you’re almost 12 years old don’t you think you should stop buying this stuff”.   What she was referring to was an aisle full of Little Pet Shops, Shopkins, Monster High gizmos etc. as her daughter was looking at them.  The comment made me stop and almost want to turn to my 11-year old and say “yes, I will buy you anything in the toy section”.   When did being almost 12 mean you had to stop playing with toys.  I actually love it when my daughter,  who has already started developing that “tween attitude” is up in her room, on the floor surrounded by dolls, pet shops and little animals.   It’s not like this girl was looking at baby toys or something for a toddler – why pressure her to move on from wanting to play with mini pets for a few more years.

dreamstime_xs_49092844In a world that is constantly “on” with information from the internet and social media, maybe having them playing with old fashion actual toys is not such a bad idea.  Don’t get me wrong we live in a very techy home – with way too many devices and I do think technology is great but if I can stop my kids from being submerged in it then that’s a win.

What’s wrong with wanting our little ones to remain kids as long as they can.  To play with their Matchbox Cars, Legos, Calico Critters and dolls.  To have quiet time in their rooms while their imagination takes them and their toys to magical places.   Their time as a kid is so short that we should really be encouraging them to enjoy it and not try to end it too soon.  Next time you see them playing in their rooms why not take a break from whatever you are doing and join them on the floor for a few minutes.   It will lighten up your day and theirs!