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.

Vacation

For the past few years, Tim and I have been wanting to take the boys to the beach.  It just seemed impossible…..the long drive, the crowds, and would they get in the water?  I was afraid of many things; would Noah have a huge meltdown after five hours of driving and refuse to get back in the car, would Nate not touch the sand, would we lose Noah in the crowd at the beach or in the waves?

Only one of those fears came to fruition…..

We broke the 12 hour drive up into two days.  We drove seven hours the first day to Jackson, MS and then cut over to Pensacola the second day.  When we returned, we stayed at the same hotel to keep a routine.  The boys handled the drive really well.  We stopped often to use the restroom (Noah had one small accident in the car) and switch cars (we took two).  I think switching cars really helped, as did the DVD player in the van and their IPads.

The condo we rented was beachfront and on the 12th floor.  For the first couple of days, Nate and Noah would not go out on the balcony.  As time went on, they would venture out and eat meals outside.  Noah was not allowed on the balcony unattended…..I just didn't trust him to be out there by himself.  Nick liked the balcony form the beginning and ate most meals outside.

Nick and Noah loved the ocean right from the start.  Nate on the other hand……. It took two days and he finally would go in.  Tim handled Nate beautifully and got him in the water so much quicker than I thought.  I was hoping Nate would go in the water by the 4th day, Tim had him in the 2nd day.  We would hit the pool in the morning and then prep Nate by telling him we would go the the ocean after lunch and then talk about it through out the morning.  This schedule worked well for Nate.  It was also nice that the pools were right on the beach, so when Nate was finished with the ocean, someone could take him up to the pool.  Nick and Noah played in the ocean as much as possible.  I think Noah thought it was the best wave pool ever!

We stayed on Perdido Key, which is less crowded than Destin or Orange Beach.  To avoid crowded restaurants, we only ate out once, and that was for lunch.  It was easier to cook familiar foods at home instead of going to unfamiliar, crowded restaurants.

In order to make this vacation a success, we enlisted help from many people.  Besides the five of us, we took my mom, our nanny, and two staff members.  Without these extra hands, we could not have taken this vacation.

The trip was such a success that on the way home my mom and I were discussing where to take the boys next year.  For the first time our vacation choices seem less limited…...

I did vaccinate my children....

And I'd do it again.

A "celebrity" has been very vocal in her choice not to vaccinate her children.  She says she's not vaccinating them because she doesn't want them to get autism. And she's being very public about this.  I wonder what her pediatrician has to say about this.

There is no medical proof that vaccines cause autism. The boys' pediatrician, neurologist, and psychiatrist have assured me of this.  Sure, having kids with autism is hard....but wouldn't it also be difficult to have a child that falls ill with one of the diseases we can vaccinate against and dies?  I think the guilt of knowing that I caused the death of my child by choosing not to vaccinate him would kill me.

I worry that she, like another celebrity, are using their persona to push their beliefs onto others. I wish that only medical personnel could be allowed to speak about "preventing" and "curing" autism. So many parents, like me, wish for a cure every day. It's so easy to "chase rainbows" in hopes of helping our children. Tim and I decided early on that we would only peruse treatments that were medically proven to help children with autism. I admit, there have been days that we have talked about trying some other approaches, but we have stuck to our guns. I realize that all children are different, but medication and therapy are working in our house.

3rd child discount

I was emailed information to apply for a $5000 grant from United Health Care to help cover some of the boys' bills. I wanted the money to pay for extra shifts for Nate since his hours were cut back.

As I was reviewing the criteria, I noticed that Tim and I exceed the household income limit. I called the contact number and spoke to someone regarding our situation. Yes, we exceed the income limit, but we have 3 children with autism. That's 3 times the co-pays. 3 times the therapies. 3 times the medications. Unfortunately, that did not matter.

When my sister and I went to high school, there was a tiered system for the tuition charges. The first child was full price, the second child was discounted, and the third child was free. Why can't that apply here?

How about a policy that every 10th co-pay is free?  How about for every 100 hours of ABA, you get 5 hours free?  How about a punch card for speech and OT visits?

Autism doesn't care how much money Tim and I make. Why should it matter to the insurance companies?