Saturday, July 26, 2008

For newly dx'd families

If you're a family member of someone who was recently diagnosed on the autism spectrum, this post is for you. I've been thinking about this, what would I have wanted to know, what have I learned that would be helpful to share? So here are some things I came up with that I think are important to know, and hopefully encouraging to hear, when you've just learned that your child has autism.

1 - Your child is the same child they were before the diagnosis.

They haven't changed, the only thing that's changed is that you've been given an explanation, a way to understand why they do what they do, and why they struggle with the things they struggle with. Use that greater understanding to their benefit.

2 - You're not alone.

It's a great comfort to know that there are others out there who know what your family is going through! Seek out others who are on the same path, you can support and learn from each other.

3 - You can do this!

It's easy to get overwhelmed, but I'm a firm believer that our kids are ours for a reason. God entrusted their precious spirits to you because He knew that you would be the best parent in the world, for them. That doesn't necessarily make things any easier, but I've found that it helps to keep that perspective in mind.

4 - There are going to be rough days.

Sometimes the best you can do is just get through it and "live to fight another day." That's ok. I like the saying "when you reach the end of your rope, all you can do is tie a knot and hang on!" Refer back to #2 on this one...

5 - There will also be amazing days!

Life in general is full of ups and downs, life with a child on the spectrum is especially so. Celebrating your child's accomplishments is all the more of a blessing because of the extra work it often takes to get there (for them and you).

6 - Open yourself up to new perspectives

I have learned a lot through trying to see the world through my sons' eyes. They notice and appreciate so many things that I wouldn't have without their help.

7 - Start brushing up on those detective skills

Whether or not your child is verbal, they will most likely experience difficulty expressing their needs and wants to some degree. Your job as parent (or other family member) is to try to figure it out with whatever clues they can give you. If there aren't any clues, you'll have to resort to trial and error... Refer to #2 again, someone else who's been there may have some suggestions :).

Ok, I know I keep referring to #2 but finding a support network is so important! It's very common for parents of kids on the spectrum to feel isolated. Many don't "get out much" because venturing out can take such a great amount of pre-planning and create a lot of stress. There are local groups that can help in person, or if you're like me and find most of your "social" time is in the middle of the night, there are online communities of parents / grandparents which can be very helpful. I'm always amazed to see that no matter how quirky or unusual a particular behavior or issue may seem, there are always at least a few other people who respond that they've been there too!

As your kids make progress, they learn how to overcome certain things and it brings them to a new level of development where they find new challenges and then find ways to overcome those too.

Please share your thoughts in the comments also!


Trish on July 26, 2008 at 9:09 PM said...

Great list! Yes, there will be ups and downs. If you'll pardon the expression, one of my friends calls it the "cyclical suck" - because sometimes things are fine and sometimes they really suck.

Seriously, this is very nice; you should list in in your top posts for people to see when they visit your blog.

Amazing_Grace on July 27, 2008 at 11:12 AM said...

Great list! I would add:

Read, read, read about what your child is dx with. Learn what you can and use this knowledge to help your child.

*Knowledge is power.

lonestar818 on July 27, 2008 at 5:25 PM said...

Trish - thanks, that's so true. Good idea, I hadn't thought to put it in the top post list.

amazing_grace - you're right, excellent point. Thanks!

Just Me @ My Domestic Experiments on October 3, 2010 at 9:33 AM said...

Nice bit of outreach! We are newly Dx at age 14. Yes, very late. It is not well known that you can have Autism if you already have Down Syndrome. But the plus side is that my son got all he needed regardless because of the Down Syndrome although the sensory needs from the Autism are the primary disability. I wouldn't want to give up his quirks for the world!


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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