Best Christmas Gift: All My Sons Together

Nick, Stuart, Ryan, Cameron, Michael

Not exactly a Christmas photo, but it was taken a week ago.  They had planned a garage sale together.  They all contributed in some manner, and they split the profit.

I don't get to see my boys together very often.  Mike moved out a decade ago, so activities that include all of them are rare.

I enjoyed seeing them work as a team, and getting along.  So many times I hear that siblings don't get along, especially when special needs like autism are involved.  Best Christmas present a mom could ever get!

Merry Christmas!

Lessons With My Granddaughter

Last Saturday, I spent some time with my granddaughter.  She was diagnosed with autism when she was three, and I was curious to see how she was progressing.  We decided to hang out at a coffee shop.  At first she was quiet.  I asked her simple questions. She responded with one word answers. Typical for a youngling with autism.

We decided to go Christmas shopping for her mom and dad.  I asked her specifically what she might want to give to her parents.  After some thought, she replied, "Nail polish for Mom, and a I-pad for Dad." The I-pad was out of my budget, but with the idea of nail polish, we started shopping.

I asked her if she knew where we would find nail polish.  I realized that I had no idea where to begin to search.  My darling little granddaughter took charge.  She was hysterical.  "Come on, Grandma.  This way."  It became obvious that my granddaughter was not too sure where to go either, but we admired a myriad of delightful objects as we walked.

We actually wondered through several aisles before finding the right place.  She acknowledged, "Hair stuff."  She slowed her pace to look at the barrettes, combs, and headbands.  I inquired, "Do you like this stuff?"  She looked at me like I was from outer space.  Her response, "Yes.  Of course!"  She began a dissertation on what the items were.

I was surprised at how many different things there were to adorn hair.  My granddaughter touched every item she could reach.  Some were sparkly; others flowery.  We slowly made our way to the nail polish aisle.  Again, I was surprised at the variety of brands, let alone colors.  I just don't have time to pursue hair and nail paraphernalia.

My lack of knowledge bugged my granddaughter.  She gave me lessons in "girl stuff". In her words, "REALLY, Grandma!! (Sigh.) This IS what girls like. Sheesh."  I laughed.  I didn't know this "stuff" could be fun.  She picked out one color for her mom, and off we went.

So I need to continue my lessons with my granddaughter.   SHE is what made this lesson FUN.

Tumor Is Benign--Again--Yea!

Surgery went well--for the second time.  Tumor was benign.  Deja vu, but this was no illusion.  I will have two scars to prove that fact; they almost make a lightning bolt.  The question now is how to move forward.

All my boys are aware of my predicament--trying to reduce stress, and occasionally they try to make life easier, lighter, or happier in some way.  For example, we grind our own grain to make our own sourdough bread.  I found this smile in the flour, courtesy of Ryan.

I cherish these silly moments!   

Nicholas in Hawaii

Nick greeted with flowers at the airport

Nicholas and Dad (Mike) are in Hawaii!  What a year it's been to get them there.

We found out last February that the marching band at Nick's high school was selected to represent the state of Arizona in Hawaii for the Pearl Harbor Memorial Parade.  Each ship, boat, or sub that was destroyed in Pearl Harbor on December 7, 1941 has a representative marching band in the parade.

What an honor!! These bands are selected based on competitions.  This year Nick's high school band placed third in the state competition.  Tons of hours practicing.  The band meets at 6am every weekday morning before school.  Then they have evening practices and weekend performances and competitions.  BUSY.

Marching in parade

Then the fundraising to get Nick there.  The school had several fundraisers, volunteers asking for corporate sponsorships, and families donating.  Nick wrote many letters to family and friends to help contribute to his account.  So this endeavor is the result of many.  MANY.

Once funding was successful, another contingency surfaced:  supervision.  We did not trust anyone with our child.  Sensory overload, dietary restrictions, and anxiety attacks are not to be left with any adult.  Mike and I had no idea how Nick would react being on a plane.  Personal space and tight quarters are not easy on anyone, let along a teen with autism.

I brought this up with the band teacher, citing the IEP accommodations and modifications.  The only acceptable solution was for Mike to be a chaperone.  I was told that "the IEP would be taken into consideration when choosing chaperones".  That did not give me any consolation.  Then came the email from the band booster president that a lottery would be held to pick chaperones.  I was completely on edge then.

After several correspondences with the band teacher and Nick's case manager, I made it clear that the only person who would be appropriate to help Nick was his parent.  A fellow class mate or another adult would not suffice.  ESPECIALLY if some emergency happened.  They couldn't just call us, and we'd be there within minutes or even hours.  This was a safety issue.

I am not sure what conversations were held on Nick's behalf when the selections of chaperones were picked.  When the list was publicized, Mike's name was on it.  Relief.  Now we had to come up with the funds for Mike.  As always, money was not going to stop us from pursuing something that would benefit Nick.  Lots of prayer and faith in that department, and the funding has materialized!!

So Nick and Mike are on an experience of a lifetime.   Yes, there's a lot of "behind the scenes" that I did to help make this work.  Lots of mental preparation for Nick.  Not just band practice.  Practice sitting in close confinement.  Practice talking softly.  Practice...

I think the effort is worth it.  Nick's smile says it all!

What Are You Going To Do When Mom Is Dead?

Cameron took this pic last summer.

That was the question posed by Ryan to his younger brothers!  Within that question, Ryan touched on an aspect of life for all of us:  facing my own mortality through the eyes of my children.

For any parent of a special needs child, the thought of how his or her child will survive is a constant thought and concern.  For me, this has become more of a reality.  I face surgery again for the second time in six months to remove a tumor.  The first tumor was benign, and I hope it is again.  NOT that anyone has indicated that this tumor is life threatening, but leave it to a teen with autism to reduce life to the basics!

My husband and I have tried to raise our children to be independent, knowing right from wrong, enabling them to make good choices, and living without fear.  Well, we haven't finished the job, and I want/need more time with my boys.  (Don't we all?)

So back to Ryan.  He questioned his brothers because they weren't doing their part to help with dinner.  They had also asked questions that bothered Ryan, questions about who had to do what when.  He got exasperated, and blurted out the question, "What are you going to do when Mom is dead?"  He continued, "You're going to have to do it yourself."

I was within ear shot, but I didn't say anything.  I wanted to observe how the younger two boys reacted.  I couldn't see their faces.  They must have been momentarily stunned.  Ryan did not relent.  His face continued to ask the question!  The younger brothers kicked into action.  No longer did they stall.  Instead of asking the questions, they volunteered to do the tasks. Within a few minutes, everything for dinner was done.

This is not the first time that Ryan has asked his brothers this question.  Ryan has become aware of my daily routine since he has graduated from high school.  Within the last six months, Ryan has matured greatly.  I've heard him say, "I better step up," when he sees me get behind.

Ryan is growing up, and he is becoming quite aware of others outside his world.  For any young adult with autism, that is an accomplishment.  For a mom worried about the future of her kids, that is a great comfort!

This brings a sense of peace!

Happy Thanksgiving

I am grateful for many things this year.  My boys are surpassing many goals.  Opportunities are opening for them.  I appreciate my family, for supporting the boys' endeavors in sports, music, school, etc.  I am especially thankful for friends who have asked about my upcoming surgery, so that they can pray for me.

So with the family gathered, food shared, and football games watched today, I realize how many blessing I have received this year.  Truly a Happy Thanksgiving.  I wish my extended family and friends the same--Happy Thanksgiving.

Paying For Therapies: Cash, Government, Insurance

Earlier in the month a friend had a discussion going about government mandated insurance.  She eventually asked me my thoughts.  Here are the questions followed by my response.

So do you agree with your state's law mandating autism coverage? And for families without private insurance, do you think the state (federal, state or local government) should assist families who can't shell out tens of thousands of dollars for their children's autism treatments? I have to imagine that you have mixed feelings about these questions given your political beliefs.

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Sheryl Johnson You're right. I have very mixed feelings. If I die tomorrow, would my kids be able to live independently? Maybe. We are thousands of dollars in debt. We have not let $$ be the reason to not do something for our boys. However, we haven't thrown $$ into every new idea/fad out there. Parents of special needs kids are desperate to find a cure, solution, therapy, anything to move the kids forward.

My kids have private insurance as well as state coverage. The state coverage is minimal, and it can be revoked at any time. That has happened too. Can't rely on it. When a service has been cut, we've paid cash to continue the therapy if it has been successful. The school and state have provided therapies, such as speech and hab, and they have helped my boys tremendously. 

The flip side is having to follow the regulations set by the school and/or state. Children, well, people don't fit into nice rows and columns, ie rules and standards. Special needs children fit even less. Everything needs to be individualized. My kids are a great example of this. Three have autism. The standards cannot be applied equally to them, because the autism symptoms are different in each one. Due to govt regulations, though, the same set of applications has to be administered to each kid--whether or not it is working--which can be a waste of time, hence money. It frustrates the therapist and child.

Then there are meds. Typical medical protocol is to medicate my kids--especially when they were younger. The meds just doped them up. After 2 years, we took them off. I did a ton of research (and I still do). Alternative therapies have proven much more successful. Insurance doesn't cover these. Doctors don't necessarily agree with me, or each other in this realm. As MOM, I have the responsibility to do what is best for my kids. So I am self-employed to stay at home. (husband works full time) We pay cash for what my kids need. If you have known my kids for the last 10-14 years, you can see the progress.

So here's the catch 22 syndrome... yes govt funded services help financially and therapeutically to a point. If my kids were stuck with govt restriction and typical medical protocol over the years, they would not have made any progress and most likely would be on some sort of govt program permanently. Yes, having freedom to research, choose, and pay privately has allowed our kids to thrive and prosper. More than likely, they will not need govt support as they move out of the house.

Tis typical for a family to pay $15,000 annually for a child with autism,. I have 3 kids. Do the math.  Here are the results.  One has totally recovered--no services from school or state. The other 2 have minimal assistance from the state, and one of those has some help from school--the other is moving on to college. We are slowly paying off our debt. Our children are thriving. It is a sacrifice, but that is what parents do. I can also go on and make comparisons of some govt services vs private services... but I think this is long enough. And this is just a touch of what I could write.