Everything I Need to Know about IEP’s* I Have Learned from Watching Sons of Anarchy

1.      When you feel intimidated, wear leather.    You may be worried about the IEP, meeting with a roomful of “experts”, and setting a plan for your child’s entire educational career, but if you show up in an entire outfit made out of skin tight leather, you’ll look confident.  I would even suggest splurging on some leather chaps.  You’ll send an unspoken message.  I am bad ass so don’t even try to screw me or my kid!  So walk in, kick your boots up on the table, and confidently say “Let’s do this!”

2.       Have a back up plan.  Think of it as insurance. “You want to cut the amount of therapy hours Tyler gets? You want to put him in a class with 12 kids and 1 teacher? BAAMM!  I don’t think so, sparky!”  (I would not recommend using the term sparky.  It takes some street cred away from the leathers. You get the overall point, however. )

3.       Keep your plan a secret.   Just when you are thinking, “How is this delightful band of biker  brothers going to get out of this mess,?” BAMM- you are blindsided with an unknown plan in place all along.  How did you not know Jax already had a drug cartel shipment on the side just waiting to go?  Have your own back up plan secretly  in place.  “You say the school can’t afford the extra parapro your child’s classroom desperately needs? Well, perhaps if we spent those cookie fundraiser profits on the classrooms instead of a new slide and school board “donations”, we could find some room in the budget."

4.       Enlist your gang to help.  Did Clay go to confront his druggie wife’s boyfriend all by himself?  Absolutely not!  He took a “brother” or two to back him up just in case shit went down!  Have your own team of “experts”.  Aaron and I did this when Tyler was in pre-k.  They were trying to put him in a severe class so they could get out of testing him with the rest of the students.  We showed up to the meeting with 3 private therapist, grandparents, a state board of education official, and a psychologist.  Before the end of the meeting, Tyler was where he should have been placed to begin with and the county officials were begging for forgiveness.  So fill up the chairs with your own people.  Can’t find your own experts?  I would suggest buying a van and picking people up off the street as you head to the meeting.

5.       Never show fear.  Never Give up.   What would happen if the Son’s cried, shook, and peed on themselves every time someone pointed a gun at them?  That would be a boring (and very wet) episode.  When you go in to an IEP meeting, keep your game face on!   If you don’t get the answer you want from one person, follow the chain of command right up until you get what your child needs. 

6.       Remember who’s in charge.  You are the parent.  You know your child best.  Remember that and trust your instincts.  You never see Jax ask a random charming citizen what to do about his club.  He is in charge.  He knows what is best   (or at least looks like he does in all that leather.  Take a minute to picture it.  Jax in leather. J ) so remember that when you are dealing with people who have only spent ten minutes with your child. 

*IEP’s are Individualized Education Plans.  Any parent of a special needs child has at least one of these a year.  They outline goals and services for your child.

Family Dollar and Bail Money...

Is crankiness and the inability to tolerate stupidity a sign of getting older?  Is it a byproduct of being married to Aaron? (I love you, Aaron, but you know how you are! (:) I am not sure.  I do know I use to be more mild tempered.  I was not one to get involved in conflict.  I would never seek out an argument. 

*sigh*

We have a family dollar close to where we live.  Sunday, I decided to run over there and pick up bleach.  I was hoping to get in, out, and back home quickly.

*sigh*

All was going well until I got behind the lady in the checkout line.  She was talking loudly on her cell phone. I swear I  was doing my best to tune her out.  I didn't need any drama. Then, I heard it.  She began to tell her friend about another friend who is expecting.  She said the friend had just found out the baby was going to be born with down syndrome.  I PROMISE I was doing my best to stay out of her conversation.  I was tired. I just wanted to buy some bleach and go home.  Then, I heard it.

*sigh*

As she was telling her friend about what she would do in that situation, she said, "I would send that gift from God right back!"

*sigh*

I think I saw red.  You see, I found out Tyler was going to be born with Down Syndrome during my pregnancy.  I can't tell you the feelings you go through when you find out your child will be born with a disability.  Only someone who has been in that position knows.  When you are hit with that news, you   have no idea what the future holds.  There are people who are there to help, to lend support.  Then, there are the others. Those who question your decision to have your child.  Those who give you "facts" about what your life is going to be like.  The decision to have and keep Tyler is one I have never regretted.  My life is blessed beyond belief just to know him.  So, I am sorry.  I tried to keep quiet. 

*SIGH*

Turning, I said to the woman,
"Excuse me, My oldest son has Down Syndrome.  The hardest part of my pregnancy was not worrying about the health of my baby.  The hardest part of my life is not worrying about what the future holds.  The hardest part is putting up with ignorant people like you.  Do your friend a favor and keep away from her!  She has enough to deal with without you talking about her behind her back and she definantly doesn't need need your opinions." 
Then, I left her standing open mouthed on the sidewalk. 

Everyone tells you it is important to be an advocate for your child.  No one tells you how hard it is to ignore stupidity.

*sigh*

I was still fuming when I got home.  After telling Aaron the story, he looked at me and said something about starting a savings account for bail money.  I think from now on, I'll buy my bleach from wal-mart. :)

Happy Birthday, Logan!

September 25, 2012
 
Dear Logan,                                       

I can’t believe you are 10.  It seems like just yesterday you were born.  Did you know I took one look at you and thought, “I’ve given birth to a papoose!”  You had such beautiful dark skin and eyes.  Your head was covered with black hair.  Of course, I only got to look at you briefly because your daddy whisked you away and wouldn’t give you back.  In the hospital, you were constantly in his arms.  I had to beg to hold you.  At the slightest noise, your daddy would scoop you up.  He was enthralled by you!  You seemed perfectly content to be daddy’s boy- then and now!   

I am so proud of you.  You have accomplished so much in the 10 years you have been alive.  Most of all, you are kind.  (Except to Joey.)  Daddy and I watched you last weekend at the aquarium.  You would walk up to any of the children with special needs and start a conversation with them.  You weren’t even a little intimidated.  You are amazing with the kids on our baseball team.  I was so impressed that you didn’t want to play on a league yourself because you wouldn’t get to be a buddy to a player in the sunshine league.  You are patient.  (Except to Joey.)  You are helpful. (Except to Joey.)  I am so impressed by the person you have become.  

I can’t wait to see what you do with your life.  I know you can do anything you set your mind to do.  I hope you have a happy birthday and a GREAT 10^th year.  (Hey- work on the Joey thing.)

I love you,

Mom

Focus, Fun, & Fishies!

This past week has been hard- the kind of hard where life sees you on the ground and just keeps kicking you.  As you probably noticed from the previous couple of blog post, our family has been going through a tough time recently.  Today was a much needed day.  What made today so special?  Well, it was the annual Focus day at the aquarium, of course!  

Special thanks to Lucy, Joy, and all the staff and volunteers.  You guys rock!!

Our family belongs to a wonderful organization here in Atlanta.  Focus stands for Families of Children Under Stress and it includes all families who have a child with special needs.  This group is AMAZING! Not only do they provide information and support for families like ours, they also bring the fun!  To tell you about all of the things this group does would take too much time, so I will direct you to the website if you would like more information.  The address is http://www.focus-ga.org/ . Check  it out!  If you are a special needs family- you need to be a part of this group.  If you are looking for a deserving organization to make a donation to, please consider this group.  

Aaron, the boys, and I signed in at the Georgia Aquarium at 8:30.  That is right!  The aquarium opened early just for our group!  We were able to explore the attractions for 1 ½ hours before they let in the general public.  That meant we were able to explore the exhibits before they became crowded.  In fact, by the time we went to the Ocean’s Ballroom for brunch, we had toured most of the aquarium.  Brunch was yummy!  Wolfgang Puck catering was responsible for the food and it was delicious.  

After lunch, we toured the frog exhibit.  (My sister would have died!)  We also caught the Dolphin Show.  The highlights for the kiddos were the penguins!  We had to go back to that numerous times and Joey spent a good part of the day explaining to me how he could adopt one of the penguins and keep it in his room!  Tyler loved the whales and the large viewing area.  

Aaron, Tyler, and Joey explore the Jellyfish

 

Do you know what the best part of the day was for me?  It was being with the other families.  There were wheel chairs , feeding tubes, meltdowns, screaming, and some fits. No one in focus blinked an eye.  Aaron talked to a woman in the brunch line.  She was about to fix a plate for her child and herself.  Sighing, she set her plate down and said her child was just going to have to sit while she fixed her plate.  She told Aaron she hoped he could do that quietly.  Aaron smiled and said, “Who cares if he gets loud?  We are focus and we’ve all been there!”  It was wonderful!

Logan becomes part of the exhibit

Joey and Logan "swim" with the penguins

Breakdown

My grandmother has always told me, “God doesn’t give you more than you can handle.”  Tonight, in a particularly emotional moment I found the following quote by Mother Teresa,

"I know God will not give me anything I can't handle. I just wish He didn't trust me so much."

Last week, I was on the phone talking to my mom.  I was telling her about an incident with Joey and I got angry.  In despair, I cried out, “Why?!!  Why does God seem to put everything on me?”  Very quietly, my mom said, “I don’t know, sweetheart.”  

The truth is-She doesn’t know.  She doesn’t know what she can do to help me. How can she respond when her natural mom’s instinct is to fix everything? How can she respond to situations she can’t fix?  Doesn’t every family have its own unique challenges? Are mine more than others?  I know I only have to go and sit in the ICU unit at the Children’s hospital to see families dealing with far worse things than I am.    

Yet, tonight I want to scream out, I want to be angry with my creator for the challenges he has given me.  I want to cry and throw a tantrum.  I want to demand-yes, DEMAND to be given a reason why my heart is forced to break wide open over and over.  I want to see the future, the outcome, the purpose! 

You want the truth?  Here’s the truth-

I quietly observe the children of my friends who are the same age as Tyler.  I watch them argue with their parents over going out with friends and I am jealous!  Why do some parents get to deal with argumentative teenagers when I can’t seem to carry on a conversation past one sentence with my teenager?  Why do other parent’s get to worry about which is the best vitamin to give their Kindergartener when I am up researching ADHD medication side effects for my youngest son?  Why do I know the staff at the local urgent care center so well? 

There are days when I am tired-tired of dealing, tired of feeling as if everyone is looking to me to have the answer.  I want to sit in a small quiet room and just feel Aaron’s arms around me.  I don’t want to talk, just sit.  

Don’t get me wrong.  I love my kids.  There has never been a moment when I regret having them.  I would make the choice all over again for the chance to be their mom.  

I am tired of others looking into my life and saying, “You are so strong” or “I don’t know how you do it.”  I do it because I have to.  There is no option for me to not do it.  

So if I need to breakdown now and then, look the other way, and try not to judge.