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Saturday, January 6, 2018

When Your Child Has Been Diagnosed With FASD



So, you recently learned your child has FASD, now what? I am frequently contacted by parents who's child has been diagnosed and they are fearful, lost and overwhelmed which is completely understandable when you are looking at something as complex as FASD. Here is some of the information I give them:

It is an overwhelming diagnosis, with lifelong implications so it is understandable if you feel discouraged, angry or even bitter. Give yourself some time to grieve, show yourself some grace because you will need it in the days ahead. 

While FASD is a lifelong disability there are many things you can do to make life easier for you and your child. You are going to mess up, sometimes majorly, but don't give up because each morning brings a new day. One of the positive things about FASD, is that those with this disability  are always willing to give you another chance if they know you have their back.

Join a support group. There are some excellent ones on FB.  Flying With Broken Wings and Parenting FASD Kids are two of my favorites. These parents have seen it all from infants with failure to thrive to teens/young adults who need out of home living supports. When I am faced with a new behavior of Joseph's or he does something that I cannot make sense of these are the groups I go to for advice. If you can find a live support group in your area, that is awesome. NOFAS is an excellent source of information if you are trying to understand FASD.

Next put interventions in place. If your child is melting down that is a sign that he needs more support. If the meltdowns happen over getting dressed, he may need you to choose his clothing and hand them to him in the order he is to put them on. He may need you to dress him even though he is way beyond the age where children typically need help dressing. If the meltdowns happen when you go out in public he may be overwhelmed with the noise, action, bright lights or the need to converse with people. If they happen at bedtime perhaps a weighted blanket, soft music or night light would be helpful. These are just a few of the things that bring on meltdowns for those with FASD. Keep in mind that your child will respond to things in his own unique way and require intervention that is specifically designed just for him.

Your child may become overstimulated quite easily and you will need to step in and monitor his interactions with others. This is something many with FASD, but not all, struggle with. If this is an issue, you will need to step back from the busyness of life. This isn't easy but is sometimes the key to getting your child back on track.

Let go of what is typical for a children your child's age. Our children with FASD typically function at half their Chronological Age. This means your 2 year old presents as a 1 year old but your 18 year old may present nearer to a child who is 9 years old. The older your child is, the more complex this becomes. In our state you can get your license when you are 16 but if your sixteen year old functions at a 8/9 year old level, he will not have the executive functioning necessary to handle a vehicle safely. He may also have a hard time making good judgement calls in the places he goes and the friends he keeps.

There will be days when you feel alone, days when you cry, "Why me, why my child?" You will be horrified when you see pregnant women drinking alcohol. You will get weary of "fighting" school and law personnel as you try to get your child the services he needs. Your days will be consumed with making life easier for your child so that you in turn can enjoy life because as any parent will tell you, "When your child with FASD is struggling, the whole family struggles."

Your child may lash out at you in anger but try not to take it personally, even though it is sometimes nearly impossible, because he will let his pain out with those he trusts. Never forget your child needs you even if his words and actions appear to show otherwise. When your child lashes out, go to someone who understands, then laugh n cry together. A friend and I text regularly and laugh over the craziness of our lives.

You will have to build new dreams but that isn't necessarily a bad thing. You will find pleasure in watching your child succeed and knowing you have helped him reach his goals. You will learn that you can do hard things, you can overcome and in the end, hopefully you can say, "I wouldn't trade my experiences for anything!" Even though if you could you would do all in your power to heal your child.


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