Sunday, September 14, 2008


This is what Rich and I look like when we're A.) all dolled up at a wedding and B.) relaxed and enjoying some time together. Our weekend in Cape Cod was probably the best weekend I can remember having in all of my 38 years. Rich didn't miss a single detail and I felt like royalty from the moment we left town to the moment I returned. I didn't worry about Ethan at all because he was in good hands and I knew he was having a great time. Whenever Rich called home to get an update we could hear Ethan's laughter in the background. I slept through the night 2 nights in a row in big comfy bed and ate amazing food the entire weekend. I saw old friends and spent much needed one on one time with Rich. I danced and laughed my self sore. 

Now we're home and Ethan and I are on the mend from some weird upper respiratory illness that he probably brought home from school. He missed 3 days this week and was pretty bummed about it, each day signing "backpack" and "school" as if to remind me that I was forgetting something important. In addition to signing more often, interacting with peers, and following directions; Ethan has also been putting things away when he's finished and he's getting better by the minute at going up and down the steps. School has really transformed him already and he's only gone for 3 weeks! 

Last night I read a blog post written by a mother of a child on the spectrum that really resonated with me:
"And so here's my five-cent revelation, guys: the hardest thing about having a child on the spectrum is the relentless advocating--every damn minute of every damn day--to make sure that the rest of the world treats him with the respect and care he deserves, until such time as he can do it for himself."

I have been teetering on the edge of losing my resolve when it comes to the dispute over his placement at the deaf school. Most of the time I just want to cave in and pay the tuition ourselves. Giving up isn't really an option for us financially, but neither is taking this to the bitter end. Going through due process could cost us up to $10,000 and we could still lose. In Illinois (the only state I found stats on) the court favors the school 2/3 of the time. So if that statistic were similar here in Ohio, we'd be out the money and still be stuck with the cost of tuition. 

Our advocate gave me some extreme advice after just one harried conversation. She has a great record of winning her cases (she's not a lawyer, but she knows the law) so I decided to follow her directions and I withdrew our appeal. She instructed me to request another IEP meeting instead because we have a new report from Ethan's SLP that we would like to use as part our argument. She thinks (and I'm sure she's right) that if it isn't part of the IEP or MFE (sorry for the education terms) that the school won't give it a second thought. I hate the idea of going back into another IEP meeting, but from what I know about this woman, she's a shark and she'll likely do all the talking anyway! She sees multiple issues with his IEP that need addressed, so I know this is the right thing to do. 

She also wants a psychologist to visit the placement at the public school as well as observe Ethan at the deaf school. This report can support our argument that Ethan's social/emotional development will be stunted in a public school vs. a school where all the children and adults use sign language. How we get this paid for is still a mystery. 

The only good aspect of all of this is that Ethan's deaf school is very understanding and they are allowing him to stay on as a "visitor" for as long as it takes to resolve the situation. They have never asked a deaf child to leave for lack of money. That would go against everything they are there to accomplish. So Ethan will remain in this wonderful place that is helping him find his voice while I continue to dig deep and try to find my own. 


leahlefler said...

The wedding trip to Cape Cod sounds like a lovely time! I'm sending you some electronic strength for the ongoing school battle. It sounds like Ethan is just growing by leaps and bounds at the deaf school, which shows that is the right placement for him! Things will come out right in the end, but why does the process have to be such a struggle?

Dave said...

I am thrilled at Ethan's new world! I hope the ongoing school battle keeps his growth and spirit moving onward and upward. Only good things ahead for you and family I feel!


Julie said...

Yea, Heather :0)

I'm glad you and your husband had such a great getaway.

Your quote about the relentless advocating really hit home... especially considering that one day I will hand this over to my son, and HE will carry that burden in addition to his hearing loss.

When is the new IEP meeting?


flutter said...

first of all, YOU ARE ADORABLE.

second of all, Ethan could not be more blessed to have you two as parents

Anonymous said...

Pics are beautiful; you two look great!
I hope everyone is feeling better soon.
Sending love, Misha

Shiloh said...

What a beautiful picture of you and Rich. Ethan sure does have a pretty mommy. You are doing the right thing fighting for Ethan. I pray that God gives you the wisdom and strength to give your boy what he needs. God bless you guys.

Loudest Mom said...


I could have written aspects of your last two posts (unfortunately NOT the part about having a wonderful, restful weekend :), but definitely the part about almost caving in, paying yourself, etc. We've done this, and the only thing it accomplishes is to put off the fight (at least in our case, w/ four kids). We put off the fight w/ Emily, and now are forced to do it w/ Trey because we just can't pay another $20,000-30,000 for schooling. That's our college fund, etc. Anyway- it sounds as though you have great people on your team...hang in there. It's stressful...and exhausting.


Here It Comes said...

That weekend away sounds like the perfect thing for you! I am glad you enjoyed it.

And, I would try another IEP with this advocate present. I am so sorry that it has gone like this for you.

Mom to Toes said...

That is so awesome that you got time away! I love Cape Cod. It is one of my favorite places on earth.

I think you are taking the right approach with the IEP. I am sorry you have to fight so hard. I just isn't right and it makes me so angry.

I continue to be amazed at the school he is in! Your comment about them never turning away a deaf child choked me up. He is most definitely in the right place.

I'll be watching for updates!!!

Laurie said...

Your picture is great! You and your husband look like a wonderful couple! We love New England, too, with its lush greenery, the ocean, and great scenery.

God gave you Ethan for a reason. . . and I know without a doubt that you are doing all you can for him. Glad Ethan's deaf school is so helpful.


She said...

You two are HAWT! I love that Rich didn't miss any details! So glad to hear that you all had a wonderful time and that Eboy was having a great time, too.

Advocacy is such hard work, I'm sure!

And you do it so VERY WELL!

Love to you.

Karen said...

Heather, email me. I may be able to help.

KC said...

SO glad you had such a fabulous weekend, just of the two of you. You totally deserve it!

Also glad you have that advocate. That school is such the right place for him.

marylee said...

you're doing all the right things (AND you're gorgeous!)

Aliki2006 said...

You both look wonderful!

Yes, the advocating gets old and tiresome. But we've found you have to do this as soon as your child is just anywhere off from "normal
or "average"--it's tough.

Beck said...

You are such a beautiful couple! And I am suddenly gripped with jealousy because I have never, ever had a weekend away with just my husband. Where have all of these kids come from?

Kyla said...

A weekend away? What is this you speak of? LOL. Sounds wonderful!

I'm glad Ethan's school is already helping him and I hope that this second IEP works wonders!

mishkazena said...

Your advocate is right. The best thing is to set up an IEP meeting and make changes. I hope your advocate will be there with you. I've heard stories about how uncooperative some schools are in revising the IEP, so one gotta be tough and stick to one's guns.

Ethan had grown since I last checked this blog months ago.

Good luck!

tammy said...

Hi Heather,
I found your blog through Laurie's. First things first,Ethan is so dang cute!!!

Just by reading Laurie's post, I was astounded what you all have been through with him in his short little life and I say "thank you". Thank you for not giving up, for continuing to fight and advocate for your precious boy and for sharing your story. You provide parents like me, newer in this journey, hope and guidance and humor and light and faith and knowledge and peace and everything else in between, that things can be okay. It will take a lot of hard work, but it will be okay, because I will make it work!

Laurie mentioned you were a teacher. I am too, but stopped this year to take care of our son Aiden (born with profound bilateral SNHL). Last year I had a child with apraxia and another student with juvenille diabetes who was also just mainstreamed out of the life skills class. My apraxia child taught the other constantly! She was such a leader! Both were amazing and taught me so much! I look back now and realize their strength and striving attitudes helped prepare me for the world that was about to open up for me.

Sorry this is so long ... I'm excited I found your blog through Laurie!