Monday, December 28, 2009

GEMM, Kicking @ss and Taking Names

When GEMM rears her head, it is rarely a welcome thing.

However, sometimes her fire is just what is needed.

As I suspected months ago, the attendance policy at Family Speech became a problem. After 6 months of not missing ONE Speech or OT session, Jonathan got sick last week. He oozed green stuff out of his eyes and nose. He ran a fever of 102. He ended up on antibiotics for the second time in his life. He missed one session. ONE!

I called the day before and told them he was sick with fever and oozy green stuff. The receptionist (whom I admit annoys the crap out of me) immediately said, "So when would you like to reschedule to avoid the cancellation fee?". I proceeded to inform her... yet again... that we felt that the policy was unreasonable. She was unmoved. I informed her that we already attend twice a week and the other two days he is in daycare all day. I said the only time he could possibly come was after 4pm on those days.

"Couldn't he miss daycare one of those days?"


"Well, I guess we just have to put you on the waiting list for a cancellation."

Well, swell. Just what I want, to sit on some waiting list to make up a session with a therapist Jonathan doesn't know for a session we really don't need to make up.

Emails flew. Voice mails were left. And management would not budge on the policy.

Well, that is not entirely true. The manager stated that they could make "an exception" to the policy if no time could be found to make the session up. And that is when it hit me... basically, this whole policy is about control. Now, for them, they want to control their money stream. They want to be the one who call the shots. They want the power to decide what is.. and is not... a 'good excuse'. And they want us to bend over and bow to their will.

So we quit.

What they failed to realize is that they really don't have any more control then we give them. They can create all the policies they like, but WE control the purse. I am so angry that there hasn't been a general uprising by the other parents who attend their office. Most of them probably assume they have no control, no choices... just what the management wants. Talk about taking advantage of vulnerable families.

With GEMM on my side, I am absolutely determined to not allow people more power over our family then absolutely necessary. I encourage all to do the same.

Sunday, December 27, 2009

On Being Brave

Recently I was Therapy Dog shopping online.

Actually, not shopping. It isn’t like you can get on Ebay and get a therapy dog. I was actually just looking at therapy dog programs specifically for children with developmental delays. I had gone to a parent support group last week and several parents had therapy dogs for their children. One parent talked about how the dog helped with calming during tantrums, the other with communication issues and safety. It was an interesting discussion because I had been thinking for several weeks that a dog might be good for Jonathan. I hadn’t thought as far as a specially trained therapy dog, but nonetheless something appeals to me about the idea of a dog companion for our family.

So, as I am cruising the Internet, I find this video:

I was speechless and in tears. So much about this boy… his face, his smiles, history…reminds me of Jonathan. Not everything, mind you. I would guess that this boy’s need for a therapy dog is greater than the J-man's. Jonathan does not have the same issues. But this video and its song spoke to me.
"... the way it always was... just isn't good enough... you make me want to be Brave..." (what a wonderful song)

Being brave means doing what you need to do to help your child. Being brave means living with grief. Being brave means having every kind of hope. Being brave means being more than you thought you could be. Being brave also means loving and laughing in spite of... or maybe even because of... the frustrations you experience. I am meeting such wonderful, brave people on this journey of ours.

So, will we get a Therapy Dog? What do YOU think we should do? Most of the Therapy Dogs are quite expensive (think thousands of dollars)... and our needs right now are small. There is a local place that does some companion dogs that I am looking into. But allow me to encourage YOU to look into these organizations and consider donating a little tax-deductible coin toward the efforts. When you read some of these stories .... oiy, my heart!!

For Whit: (Our local place)

Tuesday, December 22, 2009

A Blast from Christmas Past

This is from Jonathan's First Christmas.
He was about 9 1/2 months old.
He is still as delightful.

Tuesday, December 15, 2009

Driving Mr. Jonathan

There are lots of things to update: recent Word Watch activity, our IEP meeting last week, holiday plans, etc. However, I think I will just tell a little story.

Despite his relatively calm demeanor, the J-Man is a man of action. Clearly, he was meant for parents who are willing to run with the bulls and leap tall buildings with a single bound. Alas, he got us. Much like Tiger Woods, Jonathan likes variety. He likes new and exciting diversions. He is not a “stay at home and veg” kind of kid.

Now, any parent with a language-delayed child learns early on that in order to encourage communication you have to make the kid “work” for the good stuff. They want the cool new toy? Make them say “toy” (or some approximation thereof). A cookie? A drink? A Nintendo Wii? Make’m work for it! Motivation is the key… hookm’ with their heart’s desire and they will try to do the hard stuff for the highly sought reward.

And then … there is Jonathan.

Not much motivates Jonathan enough to really, really, REALLY work for it. He has to want it pretty darn bad. Unless whatever you are asking him for is easy to do, he is likely to move on then keep trying. The list is very short of things he will work for.

So whenever we get one, we pounce, regardless of the consequences.

And this is how we have ended up driving Mr. Jonathan around every night for his “Evening Constitutional”.

Here is how it starts:

Jonathan grabs my hand and pulls me to the stairs. He sits down (2nd stair only, thank you very much) and pulls me down to the floor to sit.

On his own he says, “Coooa” (Coat)

“You want your coat?” I ask.

“Coooooa.” He looks at me expectantly.

“Why?” I ask.

“Gooooo…. By-eeee!” He states impatiently. Emphatically.

And from this point I can elicit any number of other vocalizations. Where are your shoes? Shoo (with the sign) Where is your hat? Haaa (with the sign). Where are your socks? (just the sign for socks… oh well).

But... lest we wish to witness a meltdown… we must go out. Somewhere, anywhere. Preferably the gym playland, but Target will work. And since we are trying to encourage communication and vocalizations, we are giving in to his evening demands.

I don’t mind.

I mean, let’s face it. This is practically a conversation for the J-Man!

Monday, December 7, 2009

When ECFE Breaks My Heart, Part 2

(for Part 1, click here)

So, there I am, choked up, teary eyed and embarrassed beyond belief. I am not a huge fan of crying in public. In response to a question regarding how I knew something was "off" in Jonathan's development so early, I was explaining that... while everyone seemed to think I was nuts... my previous background in autism gave me some insight into the 'red flags', so I pursued assessment earlier than most. And then, the inevitable comment:

Lead Teacher (paraphrasing): OH, God meant for you to be Jonathan's mother! What a blessing for him!


I have heard comments like this before:

God picks only special parents to take care of these little angels...

I could never do what you do.... you have been chosen to a higher purpose.

God only gives people what they can handle, and you are meant to be his mommy.

These special little angels are sent here to teach us something.

Ok, let me explain something to any dear readers out there who do not have special needs or disabled children.

Don't say crap like this. EVER AGAIN.

Now, I think people are trying to say is that they think you are a good parent and they think that the child is lucky to have your support and love. Cool.

But this is what I hear:

Apparently, you believe that God has rewarded me for my education, training, and desire to help others by giving me a child with a disability so I can experience the sadness and anguish that causes. If I had just quit school and worked at Wall Mart I would have a "normal kid". And, of course, because YOU don't have all the fine virtues I have, you are safe from ever being 'blessed' to have such a special child. Also, only people who are good and educated and "capable" have disabled children, because God would never give an idiot a child like with a disability. It would seem that if you ever did have a child with a disability, you would give it up for adoption or leave it in the snow, since you could "never do what I do". And thank goodness God gave him to me to raise, because apparently all disabled kids are here to teach you how to be a better person.

Let me make this very clear. I am no different than you. Any parent .... ANY PARENT... could be in a similar situation at some point. You do what you must. You rise, or not, to the occasion. I do not believe God gives special needs kids like some kind of "gift". Frankly, that would just make me pissed off at God. Sometimes, shit just happens. God, or Allah or the Universe might be able to lend me a little strength, but I don't think our lives are like some massive chess game that is under some kind of master control. There are plenty of kids, special or otherwise, with crappy parents who shouldn't have children. That is just how the dice rolls.

I have no superpowers. There is no difference between you and me. You cannot construct some magical fate to separate my reality from yours. I am not chosen. I have and will continue to make mistakes. I may not be able to handle this. Do not assume I.... or any other parent of a special needs kid.... is ready, willing and able to handle this.

Our kids provide an opportunity. We can learn from them. But don't give them the JOB of teaching us. They have enough on their plate. Each of us has the opportunity to learn compassion, understanding, strength, courage, and justice from all the events of our lives. And maybe someone will learn some of those lessons by knowing Jonathan. But that is not his job. His job is to be Jonathan. To make the most of his life. And my job is to help him because I am his mommy and I take my job seriously.

Jonathan might have gotten lucky to have me as his mom. And I am lucky to be his mom. But we are as real as you. We could be you. And when you accept THAT, you will truly learn how to have compassion and understanding for us.

When ECFE Breaks My Heart, Part 1

Last week, I cried at ECFE.

In my defense, I had a long night at work the night before, was having some issues with back spasms the last few weeks and had taken a muscle relaxant (Evil Flexeril) the night before and thus had a very bad Flexeril hangover. (BTW, I hate Flexeril) In addition, the week had been long and somewhat stressful. We received Jonathan's re-evaluation from the school district, and while I am not going to go into the details today, needless to say there were many 'numbers' that made me sad. Not that he is doing poorly... actually, he is doing great! But to see how delayed he is in black and white...hard to feel good about it.

Ok, so I have had my issues with ECFE. But generally, it has been going well. However, when I walked into the parent classroom and saw the words "Language Development" written on the blackboard, I knew it was going be a quiet day for me. Since I was already feeling like ka-ka, "being quiet" wasn't going to be far from the mark anyway.

My resolve: Just keep my mouth shut. Do my best to fade into the woodwork. Find my happy place.

Yeah, right.

So, the question posed: what are your kids doing, saying, etc?

And let the brag-fest begin!

It seems petty to be jealous and upset about these things. But GEMM doesn't care. Her giant fiery head rears itself at time like these, and the throat closes, stomach acid churns, and I become an expert on the lines of my hands. Goooo to your happpyyy place..... happppy plaacee...

And then, the teacher turned to me and another 'special needs' parent and made a point of asking us what our little ones were doing. It is well known we are the 'special needs' parents, and J-man's issues are known. I was prepared. I had my script. I rattled off where we were, while aching inside because I knew... as it came out of my mouth... that it sounded bad. Real bad. But it is a script I am used to delivering and questions I had heard before. I could make it!

And then one mom asked me "And how are YOU doing with all this?"

Let the waterworks begin.

I just opened up my mouth and nothing came out. I truly didn't know what to say. No one asks me that. Not really. I just wasn't prepared. I honestly am not even sure what I said, I just teared up and mumbled something and who knows... I probably babbled. With my face in a tissue.

It just snuck up on me.

It is funny. Just when I feel like I have got it together, am working toward some level of acceptance... I find out it is just a lie I tell myself.


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