Fetal Alcohol Disorder

Fetal Alcohol Syndrome is caused when a woman drinks alcohol during pregnancy. It is a spectrum of disorders.

Fetal Alcohol Spectrum Disorder (FASD), Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurological Disorder (ARND), Static Encephalopathy Alcohol Exposed (SEAE), and Alcohol Related Birth Defects (ARBD).  To go over each one would make this a very long blog post so check out the resources below.

The FASlink Fetal Alcohol Disorders Society  is a busy looking site but has a lot of information if you would like to learn more.

My absolute favourite resource and the one workshop where I learned the most was from Jeff Noble. If you ever get a chance to hear him speak, make sure you do!! You will not be disappointed! You can check out his website here. He has a Facebook page called Fetal Alcohol Syndrome Forever w/ Jeff Noble. Jeff also has a couple of great books. They are the first things I would recommend you read. Check there out here!

If you are a birth mother, one thing to always remember is that you did not intentionally hurt your baby. Jeff Noble makes it very clear in the beginning of his workshops that no mother ever intentionally hurts their child. Don’t be afraid to seek help and speak to him. He is non-judgemental and very understanding.

G got a diagnosis of ARND. She will always need an external brain (support people) to help her throughout life. It’s not easy. She is so very aware of her surroundings and how a “typical” 14 year old behaves. What they are able to do and what she struggles with. It’s heartbreaking. But as she gets older we are coming to a common understanding of what she can do on her own and what she needs help with. She is appreciating the help more often than she used to. She doesn’t like it, but when she thinks of how life would be without our help, it frightens her.

Fetal Alcohol Syndromes are extremely hard. Hard for the child/adult diagnosed and hard for the family and those assisting them. There are success stories for those who have the support. Don’t give up and don’t be afraid to ask for help! You don’t have to do this on your own.

Here are a few other resources you can check out.

FASDCHILDWELFARE.CA

FASDCHILDWELFARE.CA  Caregiver Curriculum has 6 Modules from the effects of the brain, living with FASD, caregiver self-care to symptoms and working with professionals.

The Government of Canada has many links to other supports in our country. Check them out here.

*For all of you caregivers out there, you will need some respite. That break that allows you to recharge your batteries.

Here is a list of Respite Services in Simcoe County.

Click here for the link of respite services located throughout Canada.

Our Ontario Government website explains how you can qualify and apply for respite services and who to call.

If you need anything else, send me an email at wellbalancedlife@rogers.com

Remember you aren’t alone!!

 

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Sibling Sanity

Having a sibling with special needs can be very rewarding but it also comes with it’s own set of challenges.

The first part of this post is really me bragging about my kids but it’s also to give you hope that things will be ok! Feel free to scroll down to the strategies section if you’re short on time. 🙂

Starting with the great benefits, our children are extremely accepting, patient, supportive and kind. (Maybe not always with their sibling, but when necessary, they will always defend them)!

They are always making friends with other peers in their school/class/team/etc. with and without needs.

When my daughter was young, she always invited the children who normally don’t get invited anywhere to her birthday parties or out to a movie. Not because she felt bad for them but because she could see beyond what others may be intimidated by and genuinely liked the friendship they built together. Whether that friend had autism or was just quirky or was socially “different”.  She always sees the good in people.

GG’s brother has a heart of gold too. He is sensitive and kind and extremely thoughtful when it comes to others. If he does do something he shouldn’t to fit in he has major regret. Together we come up with a way to make things right. But if he sees someone with special abilities being treated unfairly, you bet he will step in.

I believe growing up in a family with special needs has opened their eyes to the challenges, heartaches and struggles that any child or adult may go through. They know that everyone has their own story and their own struggles and to not judge anyone because of that. Seeing their sister grow up to be a young girl who wants nothing more than to be accepted has shaped a part of who they are. We couldn’t be more proud of all 3 of them.

Here are some strategies to try out during those difficult moments:

The Screaming Meltdowns: This sucks! No other way to put it. When someone is screaming for hours, you just want to cry yourself sometimes. It is loud, annoying, sad and just plain awful.

If you have another adult or the kids are old enough to go out on their own, send them outside. Give them a few dollars to walk to the store for a treat (make sure they eat it all before coming back)! Walk to the park, go for a drive, wherever you can go.

If they can’t leave the house or are young, try setting up an area in the house they can go to when the crying is happening. Have a few pillows, a bean bag chair, iPod, iPad, headphones, books, lollipops (you can get some healthier ones at Homesense, Marshalls or Winners). Basically a hang out spot where they can go to chill out. A little tent for smaller bodies to sit in would be fun too!

If your children are older and/or have to get their homework done, a space in their room for this helps out. If you have room, set up a desk area. If space is tight, get one of those lap pillows with the hard top they can write on. Have headphones with an iPod or some other music source or try out some noise reduction headphones! They work great!! It doesn’t block out the noise completely but does a pretty good job. Just google or check out amazon.ca. Look up EAR PROTECTION headphones. You can get a pair for about $30.

Time Consumed by Needs: Let’s face it. Our child with needs takes up a lot of our time. And that’s ok! We are happy to help her! But you have to remember to make time for the others. Kids AND hubby or wife.

We have what we call “Special Time” with each other. That is 1 on 1 or 2 on 1 time with each child. As often as we can, we schedule time on the calendar for both their dad and I (or just one of us) to do something with one of the kids. It’s called Special Time because we are together. It doesn’t matter what you do. It could be going to the park, out for dinner, skating, sledding, visiting the library, even hanging out at home watching a movie on our iPad snuggled up in bed. We even have “Talk Time” where we hang out in our room just talking about stuff.  Once a year we schedule a bigger outing. We would head out to the city and go to a Disney on Ice show, or Monster Trucks. My husband and daughter have been going to see the Nutcracker Ballet for 11 years now! It might be an overnighter at a hotel where we swim, jump on the beds and get room service. It’s great quality time together that is all about them. Not their siblings. Just them. And it’s precious.

Make sure to schedule time with your partner as well. We try to plan a date night once a month. It might be a dinner, movie or even lunch during our lunch break from work. It’s hard but we try not to talk about the kids. Although I don’t think we’ve ever been successful with that! Lol Make sure to schedule this on the calendar. Even a walk after dinner.

If you need someone to watch your children find another family who you trust that you can take turns watching their children also. Or a young teenager who has experience (maybe a sibling) is a great choice too. A teacher or educational assistant that works with your child at school is another great option.

Click here for some respite support services you can tap in to for Ontario residents. I’m sure no matter where you live, there are supports in place. A quick google search should help. If you still need assistance, send me an email and I’ll see what I can find out for you.

Hopefully this helps but if you need more help with something specific, send me an email. We’ll figure something out together!

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