I'm having surgery....

So here's another time that the autism just makes things a little more difficult.  I am having surgery tomorrow with a 6 week recovery period. For a few weeks I will not be able to push a vacuum, lift anything over 10 pounds, or go up and down the stairs. So, being left alone with Nate and Noah is now impossible.   My biggest stress is not the surgery itself, but getting Noah staffed during my recovery.

Luckily, the state approved emergency funding for additional hours for Noah.  Unfortunately, the company who provides our staff doesn't have enough people to staff all the hours we need help.  I am hoping they find the personnel we need.  As it is, I already am staying a few days with my mom so Noah doesn't jump on me or hurt me in any way. 

If Nate and Noah were typical children, I'd be able to be left alone with them after the surgery. They would also be able to help with cooking meals and keeping up the housework. I wouldn't be spending so much time and energy worrying about getting Noah staffed. 

Sharing our story.......

A friend of mine teaches a class at Lindenwood University and asked me to speak to her class. I told them about our journey.....the good and bad.

I told them about the poop, the appendicitis, and the social struggles. I was brutally honest. I also talked about the Autismmobile and getting services in the home. I talked about the depression and how  Noah's diagnosis almost killed me. We laughed together and got a little teary together. 

I love sharing our story in hopes that I can save another mom from feeling as overwhelmed and alone as I was. It's also good for me to tell the story from the beginning and realize how far we all have come. 

A Tale Of Two IEPs

We cranked out two IEPs today, Nick's and Noah's.  Someone suggested that we also schedule Nate's and get them all done in one day.  I just can't....too emotionally draining to do both Nate's and Noah's in the same day.  Their needs are too involved....too much.

We started the day with Nick's meeting.  We requested a SSD representative from the high school attend so we could focus on the rest of 8th grade and next year's needs.  I am so lucky that Nick attends school where Tim teaches.  It's just nice knowing that Nick's teachers know Tim and have a even more vested interest in him.  It also helps that Tim knows which colleagues would be a good fit.  The meeting was longer this year than last year's, but we got a lot hammered out.  We have minutes set for the rest of this year and next, and some good goals.  The high school representative really listened when we requested Algebra and English be in the morning when his medicine is in full effect.  We had frank and honest conversations about his social skills, lack of friendships  and choosing electives.  We decided that a foreign language could wait until his Sophomore year and Debate might not be a good class for Nick to take.  Tim and I are worried about next year, but today's meeting was a great start to reduce the worry.  It was also nice to have his home Behavior Therapist with us to talk about the Social Thinking program he is learning at home.

Noah's meeting was after lunch.  I am always worried going into his meetings.  Noah's behavior is more of an issue than Nate and Nick's and I often worry about his lack of academic progress.  Today's meeting was very smooth.  His behavior the past calendar year has greatly improved.  I couldn't believe the data.  He has also made some academic progress.  This is also in part to the home ABA team working on many of the same skills as school.  Andrea, Nick and Noah's Behavior Therapist, was ferociously taking notes and offering many good suggestions.  Noah will have many new things to work on at home.  Noah came to Southview for the second half of kindergarten.  He is now technically in the 4th grade.  The teacher he has this year is the same teacher he had for the second half of kindergarten.  It is so nice to be able to talk about the differences between then and now.  

So we made it......two IEPs, two happy parents, and, most importantly, zero tears.

Random Acts of Kindness....

My mom and I took Nate to the mall Saturday to buy him new pants for work.  He has grown so much this past year, that nothing fits.

Out first stop was Qdoba for lunch.  As we were going through the line, I was prompting Nate to order on his own.  I asked him if wanted a chicken or cheese quesadilla for lunch.  Nate kept telling me chicken, so I let him tell the man his order.  Nate told him chicken several times, so I figured he really wanted the chicken quesadilla.  We took out food to the table to eat and Nate started inspecting his food.  He wouldn't eat his quesadilla and opened it up to start picking out every piece of chicken and giving it to my mom.  I knew this was not going to work.  He would not rest until every piece of chicken was gone.  I went back up to the counter to order Nate a cheese quesadilla.  The same man was working and I told him that Nate wouldn't eat the chicken and I needed a new cheese quesadilla.  I stepped down to pay and he shooed me back to my table and told me not to worry about paying.  I would have gladly paid for the other quesadilla, but it was nice that the man recognized Nate's difficulty in ordering.

The second act of kindness surprised me more than the first.  We were at Macy's buying Nate some pants.  I was paying for them and Nate was pacing behind me.  There was a young man (in his early 20's with green hair) standing behind me.  I kept waiting for Nate to comment about the green hair, but, surprisingly, he didn't.  Nate could not stand still and just kept pacing behind me.  He also kept repeating the words, "apples and bananas."  Over and over, "apples and bananas."  One time he only said, "apples."  The young man behind me looked at Nate, smiled, and said, "and bananas."  Nate looked at the young man, smiled, and then started all over again, "apples and bananas."  The young man behind me didn't judge Nate.  He didn't look at us with pity.  He just took a minute and tried to make a connection with Nate.  It really made my day.

No meltdown...........

I think we've made progress.......

Nate was watching a Bear in the Big Blue House DVD tonight. I went back to check on him twice and the DVD had frozen. He was just sitting on his bed waiting off the DVD to start again.  When I walked in, he just kept saying, "Bear."  He wasn't crying, he wasn't stomping his feet, and he wasn't making his his pitched shrieking noises. 

Normally, he'd be inconsolable. He would have come to find me already in tears. After I'd walked back in his room and told him it was broken, all hell would break loose. The first step would be blinking quickly for a minute and the crying would start.....full out wailing. Next, he'd stomp his feet. To make sure I knew he meant business, he'd clap at me a few times and start screaming. 

None of that happened tonight. Granted, I wish he would have come and asked for help, but I will chalk this one up as a win. 

We finally saw a lawyer…….

Tim and I finally saw a lawyer a few weeks ago.  We needed help planning for the future.  It's always difficult, but with the boys' situations, we need to have everything set up correctly.

I googled "special needs lawyer" along with my zip code and a list came up.  I just picked the one closest to the house.  Their firm only handles estate planning, elderly planning, and disability benefits.  I felt like they were the right choice.

The lawyer we met with was very patient and was able to answer all our questions.  We talked about the boys and our hopes for the future.  She knew what we needed to do for the boys and how to set things up.  We talked about creating a trust that will protect all the assets and allow the boys to receive their SSI benefits and medicaid.  She also spelled out our future steps, which include becoming Nate's guardian when he turns 18.

It's still a very overwhelming process…..so many decisions to make and so many papers to sign.  It would just be easier if I could live forever.

I'm obsessed with life insurance….

Two thoughts always go through my mind:
1.  I can never die.
2.  When I do die, will I have enough life insurance to allow Nate and Noah to live comfortably?

Since I know that not dying is not an option, I now worry about #2.  So….I am obsessed with life insurance.  I have it through my work, Tim's work, and the NEA.  I have taken out the maximum amount allowed through each provider.  I still fear that it's not enough.

Nate and Noah will never work to support themselves.  If they do work, it will pay a very insignificant amount.  I am not confident that Social Security and/or Medicaid will be enough to allow them to live comfortably.  

I do not want their living expenses to be Nick's responsibility.  Since he will have to take care of all the other aspects of their lives, I want to take care of this one.  

Another application came in the mail today…..excuse me while I fill it out.