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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Diagnosed! Now what?!?!

Gracie’s first diagnosis was autism so that is where we are going to start. For those of you who have a child with a different diagnosis, check out the resources page for something that may help you there. Also, keep reading this post, because you never know! Something might be of use to you here. If you still aren’t sure where to turn, send me an email at wellbalancedlife@rogers.com and I’ll see what I can do!

First thing’s first, take a deep breath! Know that there is a TON of support out there for you and your family! I will do my best to let you know about all of the freebies out there.  You should qualify for a disability tax credit which can help out with some therapy and resources also.

Here are some links to the Ontario Government website that can answer many of the questions you may have. The menu on the left has a list of options for those with another diagnosis.

Next, get your child on the wait list for IBI (Intensive Behavioural Intervention). You can actually get your child on the wait list if there is suspicion of autism. IBI is not for everyone and not everyone qualifies. But it is a long process to get to the top of the wait list so you might as well get started now. If your child doesn’t need IBI therapy by the time they call, great! You just let them know that your child doesn’t need their services. If your child does need it, well you will be happy you put them on the long wait list! No harm done planning ahead! Here are some FAQ from the Ontario government website on IBI. To get your child registered click here for more information. Your child needs to be referred by a physician or psychologist so definitely ask your doctor/pediatrician about this! Once you are on the list for IBI services, you may be provided with support while you wait.

There are several support systems in your own community. If you are not sure, ask your doctor. They should have a list of contacts for you to see.

Remember, as hard as this can be, you now have a path. Some sense of direction. Learn all you can. It is a community like no other so try and find other families who have been down the same road.

That’s what this blog is all about. To let you know you are not alone! Together we will see the exceptionalities and wonder of our children. And together we’ll get through the tough times.

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