Your child doesn’t look like they have FASD ….

So far, we haven’t run into any major problems with people in the school system having an issue getting FASD and the accommodations needed that are spelled out in the IEP. Until recently. But that’s another story …..

Here’s a link to a post on confessionsofanadoptiveparent.com by Mike Berry,  Your child doesn’t look like they have FASD. This post summarizes many things we have experienced, or will likely experience in the future.

The issue of invisible disabilities goes far beyond FASD, or the autism spectrum, or many other acronyms.

 

Exhaustion

There are some days, even weeks, that feel like they suck the life out of you.

Thus week has had a few of those. Some of the behaviours and defiance are just enough to make me wish I could crawl under a rock.

I was talking to another parent who has adopted a couple of kids with FASD. I commended her for making it. She said the teen years can be tough, especially with hormones and all of the fun that’s on with that.

There has been so much going on that I just feel wrung out.

In the past couple of months , I came across a new to me blog, Confessions of an adoptive parent, blogged by Mike and Kristin Berry.

They have been wiring for a while. They have adopted some kids with special needs, including FASD.

They have just launched a podcast called Honestly Speakimg, which can be found on their website. It can also be found on iTunes.

They also offer a free resource, “The Weary Parent’s Guide to Escaping Exhaustion”, for subscribing to their email.

I have found several posts to be right where I’m living at the moment.

Spread the word to end the word

The first Wednesday of March each year designated as the day end the word – the r word.  Check out r-word.org for more details on there campaign.

At times, there has been lots of media attention for celebrities that have dropped the r bomb. Some are apologetic, and others are not.

We are fortunate that we have not been exposed much to the ugliness of labelling with of our child with special needs.  We hope it won’t happen, but it is likely.

Anything we can do to help increase awareness is worthwhile.

Another thought about developmental milestones

I read a post, Being a scary monster is a beautiful thing, this morning from Ellen at lovethatmax.com about how kids progress differently, especially when they have special needs.

It reminded me how much each child moves at their own pace.  Our own two kids are so different in their progress, as all are.

We have to remember that each child is different.  Milestones are based on averages.  An average is based the total of a lot, divided by the number.  By that very fact, everyone is above or below average.

We try to see everything as normal.  Really, nothing is normal.

Words – Do they really hurt?

I read a post on lovethatmax.com – a special needs blog about a “A shocking truth about the bestseller Wonder and its disability dis”

Ellen discusses a book called “Wonder”.  In her post, she mentions that this book has been well received, especially for promoting kindness.

However, there is one spot in the book where one child uses the word “retard” in a derogatory fashion.  For more details, refer to the other blog post.

Sensitivity to those with special needs has increased greatly over the years.

There is ongoing ignorance about how these words are hurtful, both to those with special needs, and love and care for them.

On the positive side, there has been a great deal of progress toward integration for those with special needs.  It is wonderful that many with special needs have been integrated into society, rather than warehoused or hidden away as they would have been in past generations.

There is still an ongoing struggle for integration and accommodation for those with special needs.  Unfortunately, this battle is still not over.

Special treatment for kids with special needs?

In late September, Disney announced changes to their program for guests with challenges.

There were reports of people abusing the system that led to the change.

Others raged that there are programs that allow preferred access.  Some questioned why people with children with special needs would go to a place like Disney.

Ellen at lovethatmax.com wrote about the reasons in this post, Let’s talk about kids with special needs and special treatment.

There is some food for thought there.

There are all sorts of challenges.

Some kids are globally delayed, behind in everything.

Some have physical limitations, such as cerebral palsy (CP) or muscular dystrophy (MD).  Usually, people with these challenges are unaffected mentally.  They may have challenges expressing themselves, but they are still people.  Like all of us.

No two situations are alike.

As busy as life with kids can be, any sort of physical delay just multiplies the challenges.  Kids go through phases.  With delays, normal phases just take longer.  With communication delays, frustration increases for everyone.

Ignorance about special needs and ignorant reactions

On August 19, 2013 the media around Toronto, ON was reporting that a family had received a very hateful letter telling them to move or euthanize a 13 year old boy, who happened to be autistic.  Here’s a link to one story.

The story went viral, and has receive coverage from all over.

I saw a post this morning on lovethatmax.com, Screw the special needs haters — Let’s teach people well.  Ellen, Max’s mom, described how they dealt with a situation where Max melted down.

It is tough to deal with reactions when a child reacts for whatever reason.  The first thing we rush to do is calm the child, and maintain our sanity.  If we can turn these things into teachable moments, it really is a bonus.  As time goes by, it will hopefully get easier to deal with these things.

Development

Reid has been expanding his vocabulary quite a bit lately.

It still can take a couple of guesses before we can figure out what he is saying, but he is talking more and more.

His vocabulary is a mix of sign language, words and sounds.

As an example, I spent a bit of time patching the lawn over the past few days, and have been watering the grass seed and soil with a nozzle.  When he sees the hose, he goes “SSSSSSS”, for the spraying of water.

He points out squirrels and a cat that hang out in our back yard.  He talks about trees, motorbikes, and bicycles.  He will shake his head yes and no accurately when asked questions.

There was an interesting article in our local newspaper this week, “Family managing daughter’s unusual speech disorder”  It called the disorder “Childhood apraxia of speech”, and more information can be found at apraxia-kids.org

This is the first I have heard of this disorder, but it certainly is worth doing some more research.

Adoption links

Every now and again, I hear a series of programs that provide some insights into the challenges and rewards of being an adoptive parent.

There were a few episodes recently on FamilyLIfe Today that covered a few different topics.  I will post the links separately.

A different take on kids with special needs – their siblings

I read a post this morning on lovethatmax.com about Max’s sister, and the impact his special needs have on her.

To be honest, I haven’t really thought about the impact that a child with special needs can have on siblings, and even the whole family.

There are several things that I do with Reid by himself.  There are a number of reasons.

Sandra often takes Tate to different activities, and I have Reid.  I find it less exhausting to push Reid around the grocery store for an hour and get groceries than to chase him around at home.  We get groceries out the way as part of the deal as well.

Tate complains that it’s not fair that he doesn’t get to go (you know the voice). He forgets about all he does that Reid doesn’t and won’t do because of their differences.

It is important to make time for all kids with each parent individually, especially when there are challenges in their situation.