Jun 2, 2013 - Autism, blog    No Comments

Giveaway Winner: Chicken Soup for the Soul:Raising Kids on the Spectrum

I’m sorry! I forgot to draw the winner yesterday for this book! I’m finding I commit to things and have little time and mental energy to accomplish them all. One day late is much better than my usual week or two late that I am doing most things I’m intending on doing :D

So here we go. I’m drawing a random winner using random.org . I had 7 entries on this contest.

The winner is: Marina! Marina, if you can email me at joy@joysautismblog.com then I can pass your information to the publisher so you can receive your book!

Thanks for entering everybody!

May 22, 2013 - Autism, Review    7 Comments

Book Review and Giveaway: Chicken Soup for the Soul:Raising Kids on the Spectrum

I’m sure most people have read or at least heard of the Chicken Soup for the Soul books but if you haven’t: they’re a collection of stories from many different authors that are inspirational and touching. The audience this book is intended for is parents of children with autism spectrum disorders but I think anyone could really learn a lot from this book. You can really get an inside look at how our families deal with trials, how much joy our kids bring us, and feelings that are stirred up in our day to day circumstances.

This book has 101 different stories by various authors who have a child or children with an autism spectrum disorder. The stories go from first finding our their child had autism all the way up to their child’s transition into adulthood. It goes from funny little stories to heart breaking struggles. There are stories about school and family life and even a few tips and techniques for you to read about.

As is the case with all of the Chicken Soup for the Soul books  you should have your tissues handy although the funny stories were really some of my favorites!

This is a great book, it’s definitely one I would recommend picking up. Here’s the good news: I’m going to give away a copy! All you have to do is leave me a comment and I will put you in the drawing. I will draw one winner on June 1st.

 

CSS Book

May 8, 2013 - Autism, Special Needs    1 Comment

Dancing Through Autism

When I got a booklet of local community classes I thumbed through it mostly looking for classes for my girls. Since they’re homeschooled we try to get them in outside activities. When I came across a class called “Dancing Through Autism” it really caught my eye!

Adrian took his first class last Saturday and he did really great! Adrian has always been a “ladies man”…seemingly gravitating towards attractive blonde women Haha!! His class was no different, there were 3 teachers and he seemed to gravitate toward the blonde teacher.

Surprisingly there were no other kids with autism there. There were however 3 little girls with Down’s Syndrome there. It was so fun to watch the kids. They did a little bit of tap, a little ballet, and then some floor gymnastics.

Adrian really enjoyed it and when we got home Glen asked him how it went and he said “I exercised…can I go play on the computer?”

Maybe check with your local dance studios to see if they offer special needs dance classes! It was great connecting with the other parents as we watched our kids too!!

Apr 25, 2013 - Autism    No Comments

Useful Links

I have a few links I wanted to share that I’ve been emailed about this week.

This first link is about a young man who has Aspergers Syndrome, Zach Henry. He talks about some of his challenges and his family talks about some of their challenges and how they were able find joy in his goals for his future. So here is the link to that short 5 minute video.

Next I have a link from a young man who has Aspergers/PDD-NOS, his name is Scott Lentine and if his story doesn’t encourage you and uplift you about your child with Aspergers/PDD-NOS, nothing will. He’s a graduate of Merrimack College magna cum laude with a Bachelor’s Degree in Religious Studies with a Biology minor.He is currently an
office intern at the Arc of Massachusetts in Waltham, where he tries to persuade lawmakers to pass key disability resources legislation to improve the lives of people with developmental disabilities. He’s a poet and a blogger so go check out his blog here!

Here is one of Scott’s poems for you to enjoy:

The Ode to the Autistic Man

Try to understand the challenges that I face

I would like to be accepted as a human in all places

Where I will end up in life I don’t know

But I hope to be successful wherever I go

I would like to expand my social skills in life

Making new friends would be very nice

Stand proud for the autistic man

For he will find a new fan

I hope to overcome the odds I face today

Increased acceptance will lead me to a brighter day

By the age of 20, I will have made tremendous strides

I know in the future, life will continue to be an interesting ride

I have made new friends by the year

I will be given tremendous respect by my family and peers

I hope to get noted for bringing the issue of autism to the common man

So that autistic people can be accepted in this great land

Stand proud for the autistic man

For he will find a new fan

I hope to overcome the odds I face today

Increased acceptance will lead me to a brighter day

And lastly I received an email from an autism podcast. I hadn’t heard of them before and I was excited to listen to them. The podcast is called All About Autism Podcast and you can listen here, the hosts are husband and wife and they are fun to listen to. You can also find them on twitter, so definitely check them out.

Apr 11, 2013 - Family    No Comments

Family Update

I’ve been MIA since November…possibly my longest break from blogging since I started. Anyway I wanted to share a quick little update since a few things have happened.

First and foremost, our sweet baby girl was born on February 12, 2013. She was 7 pounds 7 ounces, beautiful and perfect. Her name is Charlotte Caroline. The kids have all adjusted wonderfully to our newest little bundle. They are so loving and gentle with her.

Here is Charlotte (or Charlie as we usually call her) on the day she was born:

Charlie1

This is the day we left the hospital (Valentines Day 2013):

Charlie2

And this one is a bit more recent, one of her first smiles:

Charlie3

Adrian had a first today, I heard him compliment his sister which was pretty awesome. When he got home from school he came in and told Nevaeh “nice dress.” Wow. That made me smile.

Sanura and Nevaeh are doing well, we’re still homeschooling and it’s challenging but good.

Lincoln is progressing. We have his transitional meeting for kindergarten next week. I can’t believe he’s going to kindergarten. It seems like he’s still a baby, it’s going to be tough. I’m curious to see what everyone thinks his plan should be for kindergarten. Nervous.

Glen and I are great. Same ol’ same pretty much. I’ve shared a little bit about my weight loss journey and that is still a work in progress (as it always will be for me I think). I did well with my weight during pregnancy and I have about 8 pounds to go to get to pre-pregnancy weight. Not too shabby for only being about 8 weeks postpartum. Then I will continue working and losing. I have a couple fitness goals and a weight goal in mind for myself and it’s so exciting to make these changes.

 

Oct 4, 2012 - Autism    6 Comments

Full and Final Update on Sea Life Situation

First, I had a great showing of support from the people who read my blog and my friends on this situation and I’m so grateful for all of the supportive comments and help with this. Thank you.

I did receive a response from Sea Life about the incident that happened and their lack of response to what happened. I heard from both their general manager and their head of operations. They were both apologetic about the incident and the lack of response that I received which I appreciate.

Most importantly I think we reminded them how their employees need to treat families who have special needs individuals. They said “Rest assured, we have addressed the matter with the individual in question as well as all of the staff and members of management.” and “Please know we are taking this very seriously and are doing our due diligence to educate and retrain our staff.”

I totally see this as a victory for special needs families and I have no doubt their management and staff will take the treatment of special needs patrons a little more seriously now.

Sea Life graciously offered my family a discounted rate and private tour of their facility. While I very much appreciate this gesture we won’t be taking them up on it, our goal wasn’t to get something for nothing. Our goal was to make them aware of this situation and help make their employees aware about how to treat special needs customers and I’m hoping that goal was achieved.

I’m sure we’ll be back to Sea Life at some point in the not too distant future and Adrian really wants to go to LegoLand Discovery Center so hopefully these future trips will be less dramatic than the first trip.

Oct 4, 2012 - Autism, Family, Special Needs    7 Comments

Worker at Sea Life Treats Adrian Badly, Sea Life’s Response? Silence.

Update- I have received a response from Sea Life. There is a comment on this post from Sea Life. They have apologized and talked with the lady who treated Adrian in this way. I will write more later but wanted to write a quick update about this situation. Thank you so much to those of you who supported me in this. It resulted in a quick response thanks to all of you and you have my gratitude.

On September 16th Glen and I took the kids to a Sea Life Aquarium. We were looking forward to it and so were the kids. Unfortunately the day didn’t go as planned. We walked through a couple rooms, the first had fish that were under a black light, the next room had various fish on a tank close to the floor so the kids could easily see them. Shortly after we got there we came upon the touch tank, an exhibit I was looking forward to the kids checking out.

If you don’t know what a touch tank is, it’s just a tank that the kids can stick their hands in and touch the starfish. Of course this has to be done gently so as not to hurt the animals.

When we approached the tank there were many many other families standing around the tank. In fact we had to wait a bit to get close enough to the tank for our children to be able to touch the animals. It was as to be expected being that it was a Saturday and Sea Life was very busy.

As we got to the tank with the 50 or so other people gathered around a lady behind the display started explaining to the children how to touch the starfish. She explained that you must use a “two finger touch” so you don’t hurt the animals. Glen had our boys and they were well under control quietly looking into the tank. We were well aware, and had already talked about, the fact that our boys would need help to touch the animals gently and that we would use hand over hand to help them touch the animals. This worker made eye contact with Adrian and says “Are you listening?” Adrian says nothing of course because his verbal communication is so limited and he rarely answers questions. I figured she’d move on when he didn’t answer but no, she then says “HELLO!!” and waves her hand in front of his face. You’d think that would be enough humiliation for my little guy. But no she then gets this exasperated look on her face, rolls her eyes dramatically, “Ok anyway!” and goes on with her demonstration.

When this happened I was kind of in shock. I said nothing but the second we walked away from the exhibit I felt a lump in my throat and tears coming to my eyes. I gave Glen a look and he knew what I was upset about and said “She didn’t know.” I was not wanting this incident to ruin our whole day so I just forgot about it for the moment but of course not for long.

I stewed about it all night long. I told my mom about it and she couldn’t believe how badly Adrian was treated. I decided I needed to write an email to the company who owns Sea Life, the company is called Merlin Entertainments and they also own Lego Land among other children’s entertainment parks/places. I wrote them a brief email about what happened,stated that I would appreciate it if someone could talk to this woman about how she treats the children, and that I would like a response back from them. After I sent the email I got an automatic response saying that a ticket had been opened and I would receive a response from them within 10 days. I have yet to receive a response and it’s been 17 days.
(Note: This email address was the only thing listed on their “contact us” page other than a physical address to send them a snail mail letter)

In a second attempt to receive a response from Sea Life I wrote this on their facebook page on September 24, 2012:

My son who has autism was treated badly at your establishment by one of the workers. I emailed your head office at Merlin Entertainments and have not received a response. Maybe there is someone else you can direct me to as far as getting this issue resolved? I was going to share about the incident on my blog and see if I could get some help from the autism community on getting a response but figured I would try this avenue first. Thanks so much for your time.

In response to this note on their public facebook page the representative from Sea Life said:

We sincerely apologize for the treatment of your son. We are going to pass your message along to our management team here at SEA LIFE Kansas City. If you could, please call or e-mail us so we can respond to you directly. Our email address is sealifekansascity@sealifeus.com or call 816-471-4386. We will make sure to watch for your name and contact you as soon as we can.

This communication is the only response I have received from anyone at Sea Life. While I appreciate the promptness and politeness of this response it far from resolved my issue and I was definitely under the impression that I would then get a response from their management.

I have yet to receive a response after I sent a follow up email to the new email address I received. I sent it minutes after my communication on their facebook page on September 24, 2012.

After I sent that email I reached out a fourth and final time on their facebook page on September 28, 2012:

I haven’t received a response from your management. It’s shocking to me that they are ignoring this issue. I will give them until Thursday of next week and then I will pursue this as far as humanly possible. I will not have my son treated badly by adults who should know better because he has a disability and anything I can do to prevent this from happening at your establishment again I will do. My email address is joyATjoysautismblogDOTcom in case some nonsense is said about not getting my email.

There was no response from either their social media person or their management to this fourth attempt at communication.

You would think with 1 in 88 children having autism these days that companies that cater to children would have some kind of sensitivity training on autism and other special needs.

While Adrian does have autism, even if he didn’t, was the way this lady treated him a way to treat any child? I don’t think so.

So then I thought, what would be the purpose of even writing about this? What do I even want out of this? Well, what I would like to see happen with this company who deals with thousands and thousands of children annually and no doubt hundreds and probably thousands of children with special needs annually is to have them start some sensitivity training for their workers about autism and other special needs.

They may ignore my attempts to inform them about this issue but can you help me make this issue unavoidable to them? I can’t make them listen by myself (they have made that painfully obvious with not even a generic apology coming my way), I’ll need some help. You can help by sending them an email at sealifekansascity@sealifeus.com (the second email address that ignored my complaint) or make a statement on their facebook page and sharing it with your friends and family or on your blogs, facebook, and twitter so that other people can try to get these companies to do the right thing. Help me let them know that we expect our children who have special needs to be treated with dignity and respect when we come into their establishments and spend our hard earned money.

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