Flying nightmare

http://abcnews.go.com/GMA/story?id=5238571&page=1

Did everyone read this story?

Sickening I tell ya. What is more sickening is reading the comments some readers have left.

Wow! One thing is a crying toddler; another is a crying toddler with autism.

As a parent, one of the first things I learned was how awful it was to be on the crying side getting the looks. As an parent of a child with autism it is that x 10 because you cannot explain to your child what is going on! That is the part people just don't get.

My son is wired differently. He reasons differently. My goodness, people need to have a little more patience and not be so judgemental towards others. Had that woman kept coming over to my son and told him to calm down or try and touch his seatbelt, well, let's just say it would not have been pretty. Had my son been on the runway just taxiing around for an hour before taking off, yes, he would have been pissy. And you what? He cannot control what he feels and his reactions? Especially not at 2!

Autism has taught me to try never to assume and question any feelings I have before pointing fingers. Who wants to listen to a child scream at the top of their lungs? Certainly not anyone! If you know autism, you know more than likely the parent is trying to keep things under control, but it is tough.

I stopped reading the ABC board comments halfway down because it hurt. It did. One person even going as far as saying that flights are for peace, quiet and sleeping. Sigh. Geez, I thought they were to get from point a to b.


So I think, from now on, since you all know I don't sugarcoat things, I will wear this pin on flights for all those people who refuse to be a little understanding of a frantic parent trying to control their child:



And I INVITE any airline to try and throw me out of a plane. I just might hit the jackpot with that one.

It's broken! and other news...

Yes, that's what my son said to me. He brought over a toy laptop, lifted it with his little muscles and claimed "IT'S BROKEN!" with the sweetest voice.

What wonderful two words! I could not believe it.

I took the laptop, replaced the batteries and proudly showed him that "it was NOT broken" anymore!

He has never said that. In fact, something running out of batteries or broken means a catastrophe at home because he does not understand why it happened. He usually throws himself on the ground, screams and repeats what he wants over and over. I tell ya, I wanted to run into his room and break all the toys so that he would come out and confirm to me that he knows now! lol

Then, his grandma said that while urging him to play with his computer the other day, he kept saying "BROKEN!" and my mother (who has limited English) did not realize he was saying so because his PC speakers have been broken on and off for the last month! We figured that was his way of answering her as to why he was not playing with the PC!

Yeh!

In other news, he started ABA last week, 20 hours weekly. We decided that instead of a typical summer program, ABA would be his summer goal.

I have also concluded that I will be pulling him out of speech. Two times a week is not good enough and especially what we are paying for it! He needs consistency in his therapies if they are going to work. Once summer concludes, I might put him in daily ABA sessions after school and add something else that he does 2x or 3x a week.

For now, we have high hopes for ABA and this summer.

Happy Birthday! I think...

Today is my son's birthday. He turns six.
He is beautiful and other than autism, very healthy.
I am grateful for that, I really am.
I love him soooo much it hurts.
This little thing that I carried with me and who showed me how to love unconditionally.
The one who still cuddles with me at night and prefers mommy over everyone in the world.

That's my boy!

"I bet your son loves birthday's, huh?" says my hairdresser to me today.

"Sure," I said halfheartedly. Better than the answer I always want to say " Nope, really, he does not even know today is his birthday, what a birthday means and that it's his turn today. Nothing, nada, zilch. Today is just another day for him."

It was hard last night when I put him down to bed. So many thoughts. I can't believe he is not five any longer. Six just sounds so old to me now. I cried and got all sentimental about it. 

But, here we are. No special plans today. Just a little bit of family coming over to sing happy birthday on a cake he can't and won't eat anyway even if it was diet approved. I don't want to be so somber, I swear. It's just reality though and covering it up with all the fake "focus on the bright side" crap won't help, and I just don't feel like it.

We officially celebrated his birthday last week at Pump it Up. He had an absolute blast, and the only autisms that happened were # 1 when he had to watch a video before entering the inflatables area # 2 during the "eating" portion of the party. 35 kids in a little room eating pizza and cake and he wanted to leave with both mommy and daddy. Of course, that could not happen so we had a tantrum. # 3 when daddy was still inside while he waited in the car for him # 4 when a toy he received on his birthday ran out of batteries and there were no more and nowhere to find more at 8pm on a Sunday. But other than that it was a blast to jump on all the bounce houses and slide a zillion times. He really did have a fantastic time.

So, today, a week later is his real birth date. When will he look forward to a birthday and get all excited? Request a theme party? Ask for a gift? Eat cake? Blow out a candle properly? Open gifts? Is that ever going to happen?

But, when did I ever get this depressing? Oh, I know! must have been sometime between planning his first birthday and now. Yeah! The first birthday when I booked Barney to come, and he cried while we sang. Hmmm, maybe it was the second one when we had something small at home, and he was in another world the entire time. Of course, crying during the happy birthday singing. Oh wait, maybe it was the third when I figured the way to go was a water park he loves so much. Nah, that can't be it. That's the one that he was spaced out while we sang happy birthday to him. That only leaves the fourth and fifth. The fourth gathering at the My Gym I so carefully planned with the beautiful farm cake. That one was actually the best one. He blew out the candle because we practiced it a thousand times, and it took him that many to do it that day as well, but he did it. But still clueless as to what he was doing there. Lastly, the 5th when I decided there would be no party, and we would go to Disney instead. On his real birthday, we sang happy birthday, and he ran away from us. That leaves this year. It's no wonder I am all exhausted with this birthday business and the expectations that come with it.

It must be that his seventh birthday will be the best one yet, right?Yeah, that must be it.

The grass is NOT always greener

Last fall as I waited in the carpool lane at school, I endlessly watched a mom that always parked a couple of cars in front of me. As an ASD mom you often wonder what it's like to not live in our world and how lucky those are that don't have to deal with autism.

This is what I was doing as I watched this mom. Every day she would pull up and unknowingly entertain me. Some days she would get out of her car with her baby in tow. Sometimes she would change the baby in the back of her truck. Other times she would walk in and out of the office to drop off party supplies. Whatever it was, I was in awe of this mom.

Why? Well, her life seemed perfect. She was composed. She was picking up the perfect little boy who was in the 4-year-old age range and had a second baby in her arms. The baby reminded me so much of my son at that age. She is blonde with perfect hair, a fit body type and always has a smile on her face. One happy smiling family with no issues like mine! What was not to envy? This is what I want! A second baby that has yet to happen in my life, a constant smile and just that easy life I seem to think parents of typical children have and take for granted.

Out of nowhere on March 31st I got an e-mail from my husband. He was getting a physical and the nurse mentioned her best friend also has a child with autism. She would be calling me, he said. She did. She called me and we spoke for like an hour. Yet another random mom I talk to and connect with in the hopes of helping out her son. It was a routine day for me. Except this time, it was different. I arranged to meet this mom for a playdate the next day to keep chatting.

It was April 1st (April fools day). She happens to live BLOCKS away from my house. A two-minute car ride! Wonderful! I got there, and the door to her home was open. I called out, and she yelled to come on in. She peeked her head through the door, and there she was.....the mystery mom who I always admired. April Fool's Day on me!

I could not believe this! No! Can't be! Why does she have to be an ASD mom too? Damn it! There goes my "grass is greener" concept. My heart sank, and I was angry as well. All this time, she was going through the same ups and downs as I was. While I welcomed yet another ASD mom friend and was excited to have found such a cool one, I could not help but wonder how bizarre this scenario had been for me. I wondered if maybe I come off this way to others as well. After much thinking, I realized I am also always smiling when I pick up my son, and he is pretty perfect too! It's all how you look at it, no? Taught me a quick lesson about assuming and we all know what that means. . . 

It has been almost two months that she has been in my life. What a Godsend she has been. We are so similar! We have made each other cry and laugh. I find myself reminding myself of things to tell her the next time I see her. The daily pick up car lane afternoons are now spent chatting up the latest updates in our lives and comparing notes.

I no longer get to watch her and imagine her happy life, I am now a part of it. I hope we can both be happy in it. She is my new best friend, and I hope to share many moments with her and one day, look back and reflect on this stage in our lives. Like she says "we will be sipping drinks in Maui laughing about it."

Love ya girl!

Nemo update..

Well, he never did swim during the two weeks of the sessions!

We tried passive and aggressive techniques, and they all failed. The mystery remains.

Just what is it that got him spooked?

At our home pool, he will now play on the steps and stay in the shallow area. Any attempt to bring him to the deep end or to "swim" will result in him running out the pool.

We are giving him time to get reacquainted with the water as if we were starting all over again. He seems happy when allowed to roam free and play.

The summer is still young so perhaps giving him time and space will work to our advantage.

Nemo no more...

Anyone that knows our son knows he is obsessed with the water. We have always said he was our little Nemo. That is, until now.

Last year he even took swimming lessons. By the time he was done he was swimming over the water just fine, could swim to the edge, pull up and get himself out of the water.

What happened? I have no idea.

We tried several times this year to start the pool routine again. We noticed that he was not as into it anymore and in fact, was acting a little scared to go in. Instead, he plays on the entrance steps and does not do anything else. While I like that he respects the water now, I do not like his complete disregard for it. Especially living in Florida!

I was initially excited when the school announced that as part of a drowning prevention program, the county would be sponsoring swimming classes for Kindergarteners for two weeks. I could not believe how great this was going to be! That is until we got to the pool on Monday.

He initially sat down next to the kids in his class, but then got up and left running in full panic mode as far as he could. Nothing I did worked so I just let him sit there while I sulked.

Yesterday was day 2, and it was the same. I tried not forcing him. I even left his clothes on until he requested to go in. He did! I then took off his shirt and shoes when he said "I want swimming" but then he ran away again. We tried enticing him with water, his teacher, and every technique imaginable and nothing.

Thankfully I was able to hide my frustration tears behind my big fashionable sunglasses as he just sat there watching the other kids jump, swim and splash around happily.

Part of me wants to throw him into the pool and make him swim (he knows how). The other part says well if you want to sit there, then sit.

Today is Day #3, and I am NOT looking forward to it. I am dreading it. My husband says he is going tomorrow and that he WILL throw him in.

As an interesting side note, we told him all day yesterday that if he did not swim, there would be no hide and seek (his new favorite game with us) at night. Well, when my husband got home from work he did not even greet him. Instead, he stayed in his room with this eerie quiet and respect. He did NOT request to play hide and seek (that he has been playing for two weeks straight) and when my husband scolded him for not swimming, he just stayed mum. He usually would cry or try to make us forgive him as he always detests when someone is mad at him.

I wonder what goes through his head. What is he feeling? What does he want to tell us to make us understand what has happened? It is incredibly frustrating not to know.

So, I leave you as I get ready for the dreaded swimming lessons. Today I will attempt his favorite water toys and wet his feet with more water.


More updates later. Wish me luck! :)

It's baaaaaaaack!

The last time we had tested my son's urine for yeast it was a half-hearted attempt. He was not potty trained and the urine was mixed with a little water as we attempted to collect it in the tub.

Now that he can go on command we finally got a good sample and scary results to go with it too!

I got the results and then waited about a month to speak to my doc about it.

As it turns out, the OAT identified toxins produced by yeast. Well, duh.

He has elevated: hphpa, arabinose, 3 oxyglutaric acid and citramalic acid.

What does this mean?

Well I can go into the entire medical explanation, but I really like mine better: THIS MEANS THAT IT SUCKS! Yet one more thing that sucks about autism.

Now, my baby is supposed to start on grapefruit seed extract, Lacto-duo, colostrum and lipolic acid. Four more supplements to add to his diet?

The scary part is the supposed protocol to follow this week; the grapefruit seed extract for 10 days, then the lipolic acid for 3, and then conclude with a urine and stool collection.

There are days that I want to just take it all away and hand him a bowl of pasta with lots of cheese on it (you know, since he is gf/cf/sf). But, I know that would do no good either so then, what to do?

I am not looking forward to this. He has also been a little spaced out. We call his name and it' s taking him a good 2 or 3 tries to finally get him to look. This has not been present in about 4 years so it is heartbreaking to see some of that return.

Should make for an interesting post next week when it's all done.