surviving

October 29, 2017 No Comments

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!!

Surviving the Holidays

Christmas is GG’s favourite time of the year! She would talk about it all year round if we let her! But it can also be extremely stressful. She is filled with excitement and wonder and worries and questions! OMG the questions and comments about Christmas are never ending!

She worries about being on the nice list, she worries her elf will have lost her magic, she worries about how she will control herself around all of the food and she is stressed because we are so out of her regular routine, we don’t know what we are doing from day to day.

Here are some things we do to enjoy the holidays…

Schedule for the Day/Facing the Unknown: We try to keep as much consistency as possible. We keep to her scheduled eating (breakfast at 9:00, snack at 10:30, lunch at noon, snack at 2:30, dinner – when it’s ready). But over the holidays when we are visiting friends and family we let her eat 3 small treats or 1 large one if there is a display of food. We are fortunate that she will follow these rules even if she doesn’t like them.

We will write down a schedule for the week on a piece of paper and/or a whiteboard in her room. If we don’t know what we are doing we still make up a schedule but it just says “Stay at home”. Some children (and adults) will benefit from a stay at home schedule that includes ideas of different activities they can do while at home. Such as 9:00 Painting, 10:00 iPad, 11:00 outside play, etc.

Change of Plans: If you have already told your child you will be doing one thing but then plans change unexpectantly, you can make up some little cards to help. The trick is to have these cards and bags handy. Store some in the glove box, your purse, by the door, etc.

Here is an example:

Change It Up!

Take Your Pick:

-Chew a piece of gum

-Choose a toy from the bag

-Take 5 deep breaths

-Suck on a candy

Hand your child the card when telling them about the change of plans. (Always introduce and teach a new strategy – such as this card – before needing to use it. Role playing works great)!

Getting a toy, piece of gum or candy distracted GG enough to get over the change in plans. She never chose the deep breaths! Lol The bag is just a small bag with a drawstring from the $ store filled with some characters, stickers, lego pieces etc. (also from the $ store). You can use pictures taken from google images instead of words if your child doesn’t read (or is too upset about the change to read).

Allow Downtime: We also allow more down time than usual. Spending time with other children is very difficult for her. As much as we try and encourage her to play when other children are visiting, we don’t bug her too much during this time of year if there are large crowds. For us, the holidays are not a time to teach play skills because it is too overwhelming for her to retain anything.

Every child is different and I’m sure each one of you has a challenge that occurs year after year. So instead of making this post too long, write a comment or send me an email with some of your difficulties and I’ll try to get back to you with some specific strategies. (The best I can without visiting and seeing you and your child in person). You can reach me at wellbalancedlife@rogers.com