Where did the summer go?

I can't believe we are back in school already.  Where did the summer go?

Nate and Noah started school Monday.  Nick started school Wednesday.  It has been a long week with many changes.

Nate is now in the High School hallway at school.  He is in a new hallway, a new room, and has all new teachers and aides.  He has handled the transition well.  The morning staff comes a little later, so Nate has to get his breakfast independently before they arrive.  Wednesday, he was on fire.  He woke up and I told him to make his pancakes.  I went back in my room and left him alone.  When I went back to check on him, he had his pancakes cooked (in the microwave), milk poured, and his banana.  He even had his napkin!  I don't think he could have done this a year ago.

Noah is in the same room with the same teacher this year.  We are very happy with this.  He has so many new demands and staff members at home, that it's nice to have some consistency at school.  This week has worn him out!  I just went downstairs to help Ruth while Noah was in total melt down.  He finally pulled it together and is finishing his speech session at the table with a bowl of ice cream.  She is making him work for each bite.  He is working very hard to get his tongue out to lick the spoon.

We have had many staff changes at home.  Because the boys get attached to the home staff, these changes can be challenging.  It's also difficult to get someone new used to the flow of the house.  Noah seems to make it his personal mission to test a new staff member multiple times to see if he/she really means business.

The insurance company is still very stingy with the hours.  The days of having both boys staffed from 4:15 - 7:15 are over.  We are trying to get Noah more funding from the state.  We submitted a huge packet in hopes of getting a Lopez Waiver.  This will give us many more hours of staffing that will be paid for by the state.  We have our fingers crossed.......

Nick started middle school this week.  He is now in the same building as Tim.  He spent a lot of time this summer practicing his locker!  I think that having Tim in the building is helping to alleviate some of the stress.  The middle school is quite large and involves switching classes every hour.  We hope he will expand his social circle (ok, it's 2 friends...not really a circle) this year.

The house is still in its perpetual state of crazy.  Between football and the string of therapists that come into the house, it's quite a bit to take in.  It's a good thing I have ice cream........

It's never enough

A few weeks ago I met a person with an autistic child.  Of course, the conversation turned to therapies....what has worked and what hasn't.  When I asked this person about what they were doing outside of school, this person's reply was that the child gets enough therapy at school and doesn't need any help at home.

I was shocked by this statement.

I don't understand.

How is that enough? 

I am never satisfied with the amount of therapy that the boys get.  I am always pushing for more, more, more.  Anyone who has been in an IEP for my children knows this.  Sure, they are making progress, but I want more.  Not all therapy has to be at the table and not any fun.  I remember when the neurologist told us to take the kids everywhere and they would always get something out of it.  Sometimes, it's just practice waiting in line.  Every experience is an opportunity for learning for these boys.

I push for more because time is not our friend.  I push for more because I want them to have happy, safe, and productive lives.  I push for more because I won't always be here to look out for them..........

Nate's summer

Enough of the pity party....Nate is having a great summer.  I was able to enroll him in a program called Teens in Motion through ARC (Association of Retarded Citizens).  ARC needs a better name, but that's another point.

His camp is 8 weeks long and 9-4 Monday -Friday.  He is staffed one-to-one and has two outings each day.  One of the outings is a volunteering experience and the other is a fun outing.  Travis went with him until noon the first two days to help his "buddy" get to know Nate and his abilities.  Nate loves it!  He is tired, but his overall mood is much more pleasant.

He has volunteered at the Magic House, Racanelli's Pizza, Bethesda nursing home, and Stages Theater.  He has had fun outings to Forest Park, the Science Center, and the movies.  Yes, Nate sat through a movie....that is quite a feat.

I am so grateful that we live in a city that provides these opportunities for special kids.  We are hoping that his independence will improve and he will learn some new skills.  He's also enjoying his time out of the house and away from his brothers.  He's really growing up......

Do people realize how lucky they are?

Sometimes Facebook depresses me.  Don't get me wrong, I love seeing all the posts and pictures from friends.  However, sometimes it just is hard.  Seeing all the fabulous Prom pictures is hard.  Seeing all the pictures and posts from fabulous vacations is hard.  Do people realize how lucky they are?????

Most people don't plan their day according to how many staff members will be at the house.
Most people can take their kids to a destination more than 4 hours away.....that's my time limit with Noah in a car.  I can only listen to the "oooohhhhh" in a closed space for so long.  I am afraid that if we tried to fly somewhere, we would be removed from the plane.
Most people can still go somewhere with their kids without their spouse.
Most people have a list of summer activities to do with their kids........I'm sure it's a lot longer than mine.
Most people aren't still assisting their 14 year old son in the restroom.  Clean up is still an issue.
Most people don't have to tie their 14 year old son's shoes.

Most people don't realize how lucky they are and how incredibly jealous I am...............

I'm embarassed to do this.....

I am embarassed to do this, but it needs to be done.

In order to receive financial assistance through Action For Autism, we must raise $150 in pledges for each boy.  I would normally just pay it myself (because I don't feel comfortable asking for money), but it will be $450 for all 3 boys.  They have helped pay the boys' co-pays for the in-home ABA and sent Nate and Noah to camp.

If you feel inclined to help, I am attaching the link to the donation page on their website.  When it asks for compaign, choose "Family Fun Walk".  At the bottom in the comments section, please put "Nate, Nick, and Noah Hill".  This way we will receive credit for pledge.

I am eternally grateful for your support be it monetary or emotional.  I could not navigate this adventure without you.........

https://www.afastl.org/index.php?option=com_jdonation&view=donation&Itemid=12

Nate's Graduation

Nate had his 8th grade graduation yesterday.  In the past 5 days, I have attended three different 8th grade celebrations and one high school graduation.


I can tell you that Nate's was very different from the other three I attended.  At the other ceremonies, awards were given.  There were no awards given out at Nate's graduation.  At some of the ceremonies, there was always the question, "Where are you going in the fall?".  At Nate's ceremony, no one asked that question.  All 12 kids were going to the "High School" hallway at Southview.  At the other three celebrations, some students were chosen to speak.  At Nate's, some of the graduates can not speak.  The other ceremonies were at least an hour long and full of traditions.  Yesterday, the ceremony lasted 15 minutes and was very casual.


While there were many startling differences between Nate's graduation and the other ones, there was also one distinct similarity.....proud families.  We knew that  our students at Southview didn't meet the "academic requirements" to graduate from the 8th grade.  We also know that our students don't have the same futures as the students from the other ceremonies.  However, that doesn't make our child's graduation any less important.  In our hearts, they are just as smart and capable as the other kids.  In our hearts, their accomplishments are just as important.  In our hearts, our kids are just as important.


We celebrated Nate's graduation.  We had 5 family members and 6 members of his team attend.  All 11 of us were very proud to see Nate walk across that stage (with little verbal prompting) and receive his certificate.  

Private Practice again.....

Tuesday night's episode of Private Practice did it again.  They totally nailed my feelings.  I'll give you the synopsis.  Addison just adopted a baby boy.  Her sister-in-law, Amelia, is pregnant and just learned that the baby she is carrying does not have a brain.  Amelia is angry....so angry.  She can't look at Addison or her new baby.  In this scene, Amelia is saying all the things I wish I had the courage to say 12 years ago.  I was told that I couldn't be angry, that I had no right to be angry. 


Well, I was angry.  I was bitter.  After we got Nate's diagnosis, I couldn't look at other kids.  It just depressed me.  I pulled away from my best friend from high school.  She had two typical boys and I didn't.  We had been college roommates and in each other's weddings, but I couldn't talk to her.  I wanted what she had so badly, that it made me ashamed of myself.  It also made me feel like such a failure.  Why couldn't I produce a typical child?  What did I do wrong?


My friend and I have recently reconnected and had dinner a few weeks ago.  We talked about my feelings and she told me that she understood why I had to pull away.  She knew that I just needed time.  I'm getting there.  I like to hear stories about her boys.....their accomplishments, but I still get a pang.  At least now I know that that's ok.  

This scene is fabulous.  You can feel Amelia's pain and hurt for her.  I admire her strength and honesty.