Sunday, December 7, 2008

For the Holidays

Just a reminder that the Holidays can really suck if you have a child with autism. Sucks for them, sucks for you, sucks for everyone around. In regards to the kids, it's mostly overstimulation. Too much going on, changes in their routine, overload of gifts and people and BOOM! Meltdown City. Sometimes it just can't be helped, but try your best to make things business as usual for your kids on the spectrum. Don't let your relatives push you or your kids into a situation that will lead to even more chaos. If you have determined that your kids can only handle opening 3 gifts at a time without going into a paper tearing, package wrecking frenzy, then don't let great aunt Sally push another present on little Johnny as she says, "Oh, it's just one more! What can it hurt? I want to see his face when he opens it!" (side note: often little Johnny will not ever remember who gave him what, let alone remember who great aunt Sally is.) If this does happen, great aunt Sally will be the one with the weird look on her face as little Johnny opens the present, takes one look and tosses it aside, as it's not what he's currently fixated on. It's also a very lonely time of year for us grownups. Often, even our families don't fully comprehend what autism is (heck, they don't live it 24/7). They shake their heads at the kids' outbursts, furrow their brows and look aghast at the weird behaviors, and often will request that you and your 'special' kids come late and leave early, if you're invited at all. You'd think that people would be more accommodating, as it's the kids that have the disability, yet all sorts of otherwise 'typical' adults are either so uncomfortable with your kids autism or so inflexible at having their 'good' holiday 'ruined' that they just don't want you & your non-typical mess around. I learned, after many years of trying to integrate the boys into the usual family gatherings, that it was too rough on the boys, as well as me. Now we host Christmas Eve at my house, we invite everyone, and only ask that people let us know how many are coming, so we can have enough food and time to prep the boys. This is good for the boys, who can wander off at will and play with those things that are familiar to them. The problem with this set-up is that a lot of time, not everyone comes, or they will come late and leave early so as not to have to deal with the autism world too long. Either way, you often find yourself alone for a good chunk of the holidays, with only your autistic non-social kids to keep you company. I have no solution to this, other than to tell you to keep tabs on your friends who also have kids on the spectrum, because they're the only ones who really know what you're going through. Total side note but also relevant - please be careful of light displays with blinking or flashing lights. These can often trigger seizures in special needs kids, and just because yours hasn't had one yet doesn't mean it's never going to happen. Better to be safe than in the emergency room on Christmas. Bobbie is the mother of twin boys with autism, one high-functioning and one lower-functioning. She doesn't have time to blog, but you can follow her on twitter: @Bobbie42

6 comments:

  1. An enlightening blog... You are an amazing Mom and person, Bobbie. I am blown away by the strength you have to deal with your challenges from day to day. It makes my little problems seem so wimpy.

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  2. What a great post. We are having the same problem with the holidays. Even family doesn't understand sometimes.

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  3. Yes C find this a difficult holiday but we get through it somehow!!

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  4. I have volunteered to be moderator and host for the Obama-Biden Tansition Project Autism Health Care Community Discussion. There is a very limited time to make and impact on this discussion. I came up with hosting a Autism Health Twitter day to have a discussion with all stakeholders. We will have a great day because the word is out. You could help us make it a impactful day to parents by helping us get the word out. Please if you could post anything about Autism and Healthcare then mention Autism Health Care twitter day on Dec 23 all day. I would really appreciate it.
    Thanks,
    Tim



    Press Release:
    Autism and Healthcare twitter day December 23rd all day #HHS Tom Daschle invited Tanners Dad / Tim Welsh will be the Autism / Healthcare Community Discussion Host and Moderator. Sign onto twitter. Search for #HHS and post your comments and answers to questions.

    No prizes no games no tinsel Just a conversation for families fighting for children with Autism. Be There Tues Dec 23 ALL DAY Obama wants to know.

    http://www.causecast.org/member/tanners-dad


    Regards,
    Tim
    TimWelsh/TannersDad
    Autism Advocate
    http://www.causecast.org/member/tanners-dad
    http://twitter.com/TannersDad
    http://www.linkedin.com/in/tannersdadtimwelsh

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  5. You're so right. I didn't take my son to my mother's 70th Birthday party for the very same reason. All that noise and excitement is more than he can cope with at the moment. I have a very cross mummy as "everyone else brought their children". All the more reason to save mine the agro!

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  6. In ther beginning this kind of thing would really hurt my feelings but not any more. Junior and Noddy are miserable at these family/holiday things and I love my boys too much to see them treated disrespectfully.

    We do not do much with the families, if any thing at all.

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