Differently Normal

We went away this weekend to Splash Lagoon (An indoor water park) and I was nervous going. My kids require a high amount of accommodation (mostly on my part) to make things go smoothly. The weekend went great and something else came out of it that I was not expecting and was so happy to see. 

While I tend to "not care" how people think or feel about us, there is a small little part of me that wants that acceptance. So, when I see things that are special, people who go above and beyond it makes me happy and totally overshadows any of the negative we experience.

First let me say that being a special needs mother is tough....I want us to be "normal" but I want to be accommodated. It's hard to draw the line between being accepted as normal versus being allowed special things to make your little ones able to do the things that all other kids do. It's like you can't have it both ways. But this weekend I'm so happy to say I saw some really good people making our life "differently normal". 

Here's some examples and Thank yous:

Thank you to the lady who was listening to her IPOD for taking the time to take off the ear buds and talk to Little Baer. He wanted to talk to you and didn't understand that you were quietly relaxing. And thank you for talking back to him like you understood his babble, and showing him pictures and being interested in him (Different). And thank you for politely telling him no....he couldn't eat your fries (normal). ;) 

Thank you to the mom who chatted while our boys played together. Asking me Little Baer's name and telling me your sons name was Trent! And for sharing that Trent was 3 too! (Normal) And thank you for explaining to your 3 year old that Little Baer needed a little extra time on the steps to the slide, so to be patient with him! (Different)

Thank you to the mom who stopped me to say that Little Baer was a beautiful little boy and she had been watching him play (not creepin....I hope) and how amazing he was! (Differently normal?) It was so very sweet for you to recognize him and how beautiful and amazing he is. Thank you for taking the time to tell me. 

Thank you to the Heart mom (We are everywhere!) who explained to her little girl (A heart warrior) that Little Baer was touching her because he liked her and couldn't tell her. And for pointing out they shared a zipper scar! Thank you for making Little Baer feel normal while showing your daughter that it's ok to be different. 

All of these moms made a difference in our life this weekend. For treating us "differently normal" and for teaching their kids how to be the same. Us special needs moms appreciate the kindness. 

The X games Baer Style

Well, I had my first meeting with the IU (Intermediate Unit) here in our County. This meeting was to set up and discuss our transition with Little Baer from Early Intervention into the IU. The day he turns 3 he is not eligible for Early Intervention and will move on to their services. Along with those services is the world known as IEP's....This sport is EXTREME! And it takes a lot of planning and knowledge on a parents part to get through them, get what your child needs, and not have anyone cry.

I have learned a lot from Brother Baer and his IEP's. Although he is only in first grade.....I have learned the hard way. And every ounce of information I have learned has come from another parent or an advocate. So....trust me when I say that this school and their "workers" are NOT in it for your child. They aren't looking for what's best for Little Baer. They are looking out for them. And their needs and what they want. So, knowing this and experiencing this has been a rough road. If you aren't a special needs parent, consider yourself lucky. If you are....PLEASE read up and talk to other parents. More importantly talk to them about what actually is available and do not trust and believe in what the system tells you. They tell you all kinds of things that aren't true in hopes that you aren't smart enough to realize that.

So, Anyways, Here we are this morning with the IU Case Manager and our trusted EI Case Manager. I say trusted because she is. She knows I know enough now to hold my own. And she also knows that I know what THEY don't want me too. So, she sits back and smiles at the games we played during the meeting. Oh bless her! I have loved my EI team and we have made great progress. Here are the games I played with the IU today:

Them: "We will notify you of his placement in the Preschool the IU designates"

Me: "No, actually I will be touring the facilities and telling YOU which preschool he will be placed in" *smiling*

Them: "Once he is evaluated, we can notify you of what his areas of delay are and *IF* he qualifies"

Me: "I am excited to see the evaluation reports, but I already know he qualifies for services. The 25% delay is scored at his outpatient therapy center every 13 weeks for insurance purposes. So, I keep a close eye on his progression. And he will fall below the 25%"

Them: "Well, once we know *IF* he qualifies (They keep telling me IF...as IF *rollingeyes*) we can get a script from the Dr so that he can have the services"

Me: "Please give me the paperwork to get the script now because he *WILL* qualify" (See they aren't going to tell me he doesn't have a 25% delay so they don't have to pay for OT or PT. He does and it's documented from outpatient)

Me: " My plan is to have him in the IU preschool and then transition him into a "typical" preschool next fall"

Them: "Outside preschool would be your choice but the financial responsibility would be with you"

Me: "No actually, the IU will pay for the preschool of my choice if we determine he is able to attend a typical preschool. So, we will work towards that goal, but we will start with the IU preschool."

Them: "Well if you keep him in the IU preschool we will have our therapists there for his therapy"

ME: "You will have a therapist at the typical preschool as well if that's where he is placed."

Them: "We need to talk with our transportation department on allowing you to change the school he is assigned"

ME: "No actually you don't. But don't worry about the transportation department anyways. My 3 year old isn't riding a bus"

Back and forth we go. Them...Me...Them...Me....FINALLY after about a half an hour of back and forth, she says something EPIC!!!!

"Is there anything that you DON'T know about the process that I can help you with?"

Nope, I say....I'm good thanks.

See my friends....I didn't spend the past 3 years of my life in 7 therapies a week and countless hours of research, talking, and learning my schmidt to have them tell me he "doesn't qualify" or "he doesn't need" a service. I will be the one to decide that. I will be the one to decide if and when his therapies stop or if he will be included and where he's included. I will not stand for the "least services we can give this child" attitude. I will not stand for "he's a special needs child so we don't need to educate him right" attitude. I will not allow you to push me around or push this Little Baer around. I will not do that again.....So, take note my dear, I will be in control of this child's education. I will decide the process. You will either work with me, or against me. But I can promise you I will win.

:) The X factor in momma Baer is stronger then you have estimated.

On the good side...She knows I know my Schmidt. The ground work has been laid and I can feel confident that we will have a much better go round this time. (Oh and the fact that I told her the that Will's last IEP meeting lasted 2 1/2 hours and is 64 pages long...Which sounded kind of like Rocky sayin' he was getting pumped for the next round) :)

Christmas Morning

Christmas morning, 1979.
I was 9 years old. This day, this moment in childhood sticks out in my mind almost more than any other event in 40 years. My mom had worked so hard on this day. It wasn’t a glitzy elaborate event. Handmade ornaments were hanging from Christmas tree, surrounded by multi colored glow from the lights. Handmade garland made from cut outs of fabric, sewn together and stuffed, then strung together perfectly was hanging from the ceiling between the living room/ dining room areas in our base housing at Camp Pendleton, California. My mom, my sister, and my step dad lived in a modest 2 bedroom home there. As most military families we were not wealthy or even well off. My parents struggled to pay the bills and to provide for our family. But, at 9, not of that was even apparent to me. I walked out into the living room from my room to see what Santa had left me. I was wearing pajamas made for me by my grandma back east. The excitement was caught in a picture at the very moment I saw the presents.
I received 4 gifts that year. An Andy Gibb poster, an Andy Gibb puzzle and the two things that were the pivotal weapons to groom me into the person I am today. A Gerber Baby Doll that my mom had saved Gerber labels from my baby sister’s baby food and mailed in and received for free. She was dressed in a white gown, hand sewn, her eyes closed when you laid her down and she was beautiful. I loved her. She was mine to love forever. The other item was a handmade cradle for my baby that my step dad had crafted and my mom had painted white. In the cradle was a pink bedding set. The blanket and pillow were also handmade for me by my mom. It was the greatest Christmas ever. I cannot tell you many details about other years. But this Christmas….it was different.
Why this Christmas stood out in my mind didn’t become clear to me until much later. You see, all I ever wanted to be was a mom. That’s it. I never as a child inspired to be a doctor or a lawyer or anything other than a mom. I was to have 2 boys and 2 girls. They would all be beautiful and perfect. I would dress them in expensive clothing and match them to each other. Dresses for the girls, adorable pant suits for the boys. They would be smothered in love every moment of everyday. I would lavish them with everything they ever dreamed of having. I was going to marry an amazing handsome man, maybe a doctor, or maybe a prince, and would spend my life caring for my family. We would be the envy of the suburban neighborhood we were going to live in. We would go to church of course, every Sunday in our Sunday best. And I would chat with the other moms about all the amazing things my children were doing this week. And we would watch the children laugh and play together. Then we would go to grandma’s house for our Sunday dinner and the cousins would all play together for the afternoon. During the week I, of course, would volunteer for charities. Giving back would always be important. Maybe saving animals or the homeless would be my calling. That would be my life. An important one, a fabulous one. A mother, a wife, a volunteer, making a difference in the world. That would be me.
Two lessons came from that day. One, was there was no such thing as Santa Claus (well….I saw my mom in the mall at Spencer’s gifts buying that Andy Gibb puzzle before Christmas and it came from Santa DUH!) The second lesson was that dreams do come true.
Although I must confess that God answers prayers in his way and on his time. This life I lead 29 years later. The life of a mother, of a wife, and of a volunteer is not anywhere close to being that princess perfect life I dreamed of. You see my dreams never had words like Atriaventricular Septal Defect, Bicuspid Aortic Valve, Congenital Heart Defects, Down Syndrome, Autism, Mood Disorder, Oppositional Defiance Disorder, or Expressive Language Disorder. My dreams never had me spending nights in a hospital standing a vigilant guard by my child’s bedside. Watching the monitors and praying for sleep and no PVC’s. Nor did my dreams have me spending my days learning about chest tubes and Pacemaker wires. I also didn’t dream the 10 therapy appointments a week that we attend. The multiple Autistic meltdowns of epic proportions weren’t on the agenda either. None of these things were in my planning when I planned out my life but alas here we are....Here I am. A few other things weren’t on my list of dreams either. But through it all one thing remains true. God does not call on the equipped. He equips those who he calls. And God is the one who makes the choices for me in my life. I am simply here, doing God's work. Blessed to be the one he has called and equipped for this journey. I love my family and my life. And those beauitful babies that God has sent me!

This Little Light of Mine

Amazing how things happen that you don't expect. And how things you never would have dreamed, become your reality. This little boy. My Little Baer is so amazing and special to me. He has made me dream bigger, love more, stop and smell the roses, and live greater then I ever imagined.

All of my children are special. Don't get me wrong. I love them all and they are all amazing to me. But something "different" happened when Little Baer was born. Something "different" was born to me. Some call it a disability. Some call it "bad" news or tell me they "are sorry". I'm not. I'm not sorry one moment that my Little Baer is who he is. His smile illuminates the room. His laugh could break down a brick wall. His imagination and interest in the world is far different then my other children. He does stop and take the time to look, to see, and to love his world. And in turn has taught me to do the same. This little light of mine has filled every depth of my soul with love. I am a better person and a better mother because of him.

Last night he was upset, he was frustrated and mad because he wanted something and couldn't tell me what. I scoped him up and hugged and loved him and we figured it out. But I was sad, all night. Sad because he was so sad. I laid in bed for a long time thinking and reflecting on how to give him more, and how to make his world better. How much I love him and how much he has changed my life. My entire world changed the day he was born. Seriously, my entire world. Nothing is as it was before he was born. And I would not go back for one day. This amazing journey we are on has made us all better people. I hope that as he grows that he realizes there was never a day. Never a second. That he wasn't wanted or loved. I hope his days are filled with happiness and love. I want that, he needs that. And so do I.

That one little tiny extra chromosone has changed me. There was a time of sadness, but holding him and touching him and laying him on my chest got me through that. And now, there is nothing but blue skies and windmills here in Holland. We have tulips too! Yes, rain comes sometimes, but the assurance that rain brings more flowers is enough for me.

So today as I sing "This little light of mine" (To work on isolating that index finger!!) I am singing it with all my heart. I love you Little Baer