Joy's Autism Blog

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:

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

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

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.

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.

We had our ultrasound on Thursday and here she is!:

On Wednesday morning I had my first meeting with Lincoln’s new teacher. I had him in a good mood and I had him fully clothed which is a rare occurrence when he is at home. When they got here it was his new teacher whom we only met at the open house the night before and the teacher aide who he had in his classroom last year. He was excited to see her. She asked him if she could have a hug and he jumped right up on her lap and gave her the sweetest hug.

Ok, I was happy because Lincoln doesn’t usually like people coming in the house, we’ve had some major meltdowns when teachers come to the house.

It was all going well until the teacher aide asked Lincoln “Did you go swimming this summer?” I bought the kids a little kiddie pool and it was on our patio. They swam a lot this summer and Lincoln loved swimming. When the teacher asked “Did you go swimming this summer?” Lincoln heard “Lincoln do you want to go swimming right now?!” And he started tearing his clothes off excitedly ready to go swimming. He took off ALL of his clothes and started looking around for his swim trunks. You’d think I’d be embarrassed, I wasn’t at all. I figure they’re used to seeing toddlers strip down and I wasn’t concerned.

I convinced him to at least put his boxer shorts back on but he was mad at that point and was beating on the patio door trying to get out.

His teacher seems nice and I’m hoping it will be a good school year for him. He starts on Monday.

Adrian has a new teacher this year too. It’s been really good so far. I’m still feeling out how it’s going to go but I feel good about it right now.

Adrian did so awesome with his tooth extraction yesterday. He was so calm and held so still while they did his work. It was amazing.

It’s been one of those very emotional weeks for me.

Now I’m no developmental pediatrician or psychologist but to me Adrian is showing some signs of OCD. Maybe it’s just the autism but these are new things that he’s doing that have been very hard for me and they seem like OCD symptoms to me.

Adrian loves Spiderman, there is a new Spiderman movie coming out in July. Adrian knows about this and is extremely excited. This is not an exaggeration…he literally tells me 50+ times per day “Amazing Spiderman in July”. I can’t just not say anything to him when he says that or he will continue to say it over and over until I respond with either “yes”, “ok” or if I repeat “Amazing Spiderman in July” and then he will stop for a few minutes. It’s been so difficult because that can start to really wear down your patience by the end of the day. It seems obsessive to me.

The other thing he’s doing that makes me wonder about OCD is he will “check” the bathroom door every time someone uses the downstairs bathroom. He has to go and make sure they’ve put down the seat and lid and then he opens and shuts the door a couple times. Sometimes even when nobody has used the bathroom he goes and checks it.

In the grand scheme of things these behaviors aren’t that big of deal over all. His other issues are going to be far more debilitating then the recent issues but they have been things that are hard for me to deal with in some ways I guess.

Then also this week I got a report from Lincoln’s school and I wasn’t very thrilled with some of the stuff in it. It’s an old report though and much of what was in it was from data that was collected almost a year ago and he’s come a long way in that amount of time but it was just hard to read so many areas that said his functioning was “moderately low”… lots of tears and fear this week.

I saw a comment, of course online where any coward says whatever nonsense comes to their brain that any “brat” is labeled as autistic or adhd.

It’s so shocking to me that people seriously believe this. Spend about 15 minutes with my son and you’ll know autism is real.

Just had to vent it somewhere

Adrian started summer school this week. He was so happy to get back to school. His nightly routine when I say it’s bedtime is to ask “school tomorrow?” and the couple weeks he had off were kind of confusing for him. Summer school doesn’t last long though so we’ll see how he handles it when we’re back to summer break.

Our first year of homeschooling the girls went really well and I’m glad we did it. We are going to continue on with the girls at least for next year. I would love to bring the boys home and homeschool them but with the special needs involved I’m just not sure I have the energy. At least for right now that’s not in the cards.

Lincoln has really come along speech wise. I think we’ll still end up with some kind of autism diagnosis for him, probably PDD-NOS I’m guessing but I’m impressed with him. His new thing is asking “Where’s Daddy?” or “Where’s Nevaeh?”, this is especially impressive because for quite a while I could get him to repeat basically anything but as far as him coming up with his own stuff to say it was slow going. Asking questions like that is pretty awesome to me.

And Glen and I have some news, we’re expecting baby number 5. We are absolutely thrilled!

Lincoln only has a few days left of preschool and this is his first year of preschool. Lincoln has an IEP and is in a special needs preschool classroom but he hasn’t been formally diagnosed with anything yet although I suspect he’ll also be on the autism spectrum. 3 of my 4 kids on the spectrum, I think we can make a case for genetics in our family.

I got an update on how Lincoln’s doing on his IEP goals and he’s done really great this year. He’s made progress on everything.

I decided I’m keeping him home from summer school this year even though he qualifies. Firstly, he’s little, he’s only 3 years old and I want him home with me. They’re only little for so long. Secondly, he needs potty trained. I’ve taken a run at potty training with him a couple times but it turned out he wasn’t ready. When school is out this child is getting potty trained and it’s just easier to do it when he’s home with me the majority of the time. Lincoln did pee in the potty at school today though woohoo!!

I don’t worry about Lincoln the way I’ve worried about Adrian but we’ll see how he does with time. He reminds me a lot of Sanura and she’s doing really really well now so I guess no sense worrying about the future too much. We’re doing everything we can to move him along development wise.

Here is Lincoln at school, they were having a picnic:

and here he is going down the slide at school:

I have been not very good about taking care of myself over the last several years, really since I had children. I would try here and there to hit the gym and try here and there to diet but my weight was generally steadily climbing over the last 11 years.

In December I decided to make a change. I joined Sparkpeople and jumped in with both feet. I read the articles, joined challenges, tracked every bit of my calories, gave up all soda, drank at least 8-10 cups of water a day, and began exercising via walking or workout videos.

In the last almost six months now I’m approaching 70 pounds lost. I am really proud of myself and I feel so positive and motivated to keep going, I’m not done yet.

Sometimes when I feel like giving in I just need to look at my children and know that I need to be here for all of them. When you have a child who has special needs they really need their parents around as long as possible. If you have children and need to make a healthy change I want to encourage you and give you that nudge in the right direction. There is absolutely nothing better you can do for your children then to get yourself happy and healthy. Nothing better.

This is my before and “so far” picture. Since the so far picture I’ve lost about 10 more pounds:

I have a cute story about Adrian but first I just wanted to remind everyone that I have two giveaways going on right now. One of them is ending today. The Autism Awareness Nail Shields giveaway, so if you want to get in the drawing go to that post for details. I will randomly draw a winner tomorrow for a set of those. The second giveaway I have going on is a fabulous book called A Full Life with Autism. It will help you come up with strategies and put you in touch with various resources on helping your child with autism live up to their full potential as an adult. I truly highly recommend this book and I am thrilled to be giving two copies of this book away. So click here to go to that giveaway and get entered. The book giveaway will be open for the rest of April. I have at least two more giveaways coming up in the next couple of weeks too so if you like giveaways keep an eye out for more from me.

Onto my cute story. Last night the girls had a neighbor girl over for a sleepover. They live right next door so it’s really convenient and they have kids around the ages of my kids. They have a little boy who is the same age as Adrian and he comes over now and then. It’s been really fun to see him interact with Adrian. He hasn’t ever said anything about how Adrian talked or acted until this morning. He came up to me and said “I think Adrian speaks Spanish because I can’t understand what he’s saying.” I said, “You can’t understand him sometimes because he has autism.” Then he asked the next logical question “What is autism?” That’s not always an easy question to answer but of course I’ve thought about it a lot and this is what I said, “Autism makes Adrian’s brain think differently then some of your other friends’ brains. It makes it where sometimes he has trouble talking, making friends, or learning some things. Sometimes it might seem like he’s ignoring you but he can hear you.” and he said, “Ok, I understand.”

Adrian might be making his first friend. How neat would that be?