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Speaking in Cursive

Walking through this extraordinary life.

Alphabet Soup

It has been 8 days since our last D.V.R. appointment, and no word on our next meeting or plan. I am tired of meetings, and case workers and no jobs for my son or no answers And I am frankly tired of sifting through this alphabet soup.

Since 2001, it seems as though our life has been ruled by initials. I.E.P’s, E.E.G’s,D.V.R, A.S.D., C.E.S.A. The list goes on and on, and I am screaming S.O.S.! I just want answers, a plan, and words that are real words, not codes.

Our son Brett had his first E.E.G.(An electroencephalogram (EEG) is a test used to detect abnormalities related to electrical activity of the brain. This procedure tracks and records brain wave patterns. Small metal discs with thin wires (electrodes) are placed on the scalp, and then send signals to a computer to record the results.) in 2001 after suffering a seizure while at school. It would not be his last seizure or E.E.G. Later they would also test him with a sleep deprived E.E.G.(we had to keep him up all night, then bring him in for the test so they could try to induce seizure activity.) They wanted him to fall asleep hooked up to all these wires. He was in a hospital bed, with the rails on the side up. He couldn’t or wouldn’t fall asleep, so I crawled in with him. I think I was out before he was. He was diagnosed with complex partial seizure disorder.(Complex partial seizures last 1 to 2 minutes. These seizures may have an aura (or warning). Complex Partial Seizures include automatisms (such as lip smacking, picking at clothes, fumbling), unaware of surroundings or may wander.)  So this is when our I.E.P.’s began.

An I.E.P.(An Individualized Education Program (IEP) is a written statement of the educational program designed to meet a child’s individual needs. Every child who receives special education services must have an IEP.) At least once, some times twice a year, we would sit down with his “team” at school. His teachers, his aide, the school psychologist and anyone else involved in his education plan. We would discuss what was expected of him for the year, his goals and long term plans. We did this  for 13 years. And for every single meeting I was a nervous wreck, with a lump in my throat,hoping I could find the right words, to be his voice.

Eventually the letters A.S.D. would be drilled into our brains.

Autism spectrum disorder (ASD) is the name for a group of developmental disorders. ASD includes a wide range, “a spectrum,” of symptoms, skills, and levels of disability.

People with ASD often have these characteristics:

  • Ongoing social problems that include difficulty communicating and interacting with others
  • Repetitive behaviors as well as limited interests or activities
  • Symptoms that typically are recognized in the first two years of life
  • Symptoms that hurt the individual’s ability to function socially, at school or work, or other areas of life

Some people are mildly impaired by their symptoms, while others are severely disabled. Treatments and services can improve a person’s symptoms and ability to function. . According to the Centers for Disease Control and Prevention (CDC)  around 1 in 68 children has been identified with some form of ASD. These initials were and are a game changer.

With the autism diagnosis, we then were introduced to C.E.S.A.(Cooperative Education Service Agency). They would act as a go between if need be.

Eventually, Brett was old enough to sign on with D.V.R.(Department of Vocational Rehabilitation) This is a government agency, that is “supposed” to help train and educate people with disabilities, so they can work and hopefully live independently. We first signed Brett up at 14. Thinking we were doing the right thing.Convinced, by what they had promised, that we were setting a path for our son to reach the goals he had set for himself, and ones we thought he could attain.If I sound less than pleased, it is because I am. I know this, we held up our end of the deal, for at least 6 years now.We did Everything they asked,every test, every job fair, every pointless, drawn out meeting. We were there. Brett hated every second, but we dragged him to everything, thinking that the struggle would be worth it all. Now I am not so sure. During all this we also have used A.D.R.C.(Aging and Disability Resource Centers.

A.R.D.C. and D.V.R. are both Government agencies, and as expected, they don’t communicate with each other. So there have been delays, and misplaced paperwork, and precious time lost. But, we have our ducks neatly in a row. We have done everything both agencies have asked of us. The balls are in their court.A whole bag of balls. I am running out of patience and initials.  I just want answers, and a plan for our son, A.S.A.P.

The Us before Them.

 

I forgot my phone in the hotel room and I was panicked.What if one of the kids needed me, what if something was wrong with the dogs? My husband assured me all would be okay.We had gone away for the weekend. Just the two of us.

I have known my husband practically my whole life. His mom and my mom bowled together. I would ride in the back of her station wagon eating my peanut butter sandwich and then she would drop me off at school. Continue reading “The Us before Them.”

Wide Awake

 

My son Bryce comes home from college today for the summer, and his twin has been up since 4 a.m. beside himself with excitement. But he will never admit to that. I am not sure he can.

I am a very light sleeper anyway, but I began to hear rumblings at about 3:30 a.m. I went downstairs, only  one eye partially open, dogs following in hot pursuit. The lyrics to the song “My name is NO” forming in my mouth. Brett was up, and I knew why. Bryce, his twin, would be home today. “What are you doing up?” I asked. “Don’t judge me!” he declared.I explained that I was, in fact, Not judging him,but rather just curious. “I just couldn’t sleep.” he said. “Brycie comes home today!” I exclaimed, to which he responded “Oh Shit!” He was trying to act like he didn’t know or care.I knew better.

He began  stimming Continue reading “Wide Awake”

Laughing my way through

Not many moms can say they received a stolen, used, old choir sweater for Mothers Day,but I can. Proudly.We refer to it as the Asbestos Sweater. It had been stored at the high school, in a room the…

Source: Laughing my way through

Laughing my way through

Not many moms can say they received a stolen, used, old choir sweater for Mothers Day,but I can. Proudly.We refer to it as the Asbestos Sweater. It had been stored at the high school, in a room the kids called the asbestos room. My son thought it would be the perfect Mothers day gift for me.He was right.

It was his Junior year in high school, 2009. He had been taking an A.P. test, finished early and had time to kill. And some Mothers Day shopping to do.Only one of my kids would see an old, itchy, ugly sweater from 40 years ago and think..”YES!”

Listen, as the mom of four males, sometimes you are just glad they remember to put the toilet seat back down. So a gift, any gift is a bonus. One does not ever imagine or expect an asbestos sweater though.But he knew me. He knew I would “get” it. That I would laugh, and want to put it on, and wear it.He knew that I would tell everyone in a 50 mile radius about the amazing gift my kid got me.

Of course, there was the year that all of my sons forgot it was Mothers Day. My husband, being the smart man he is, knew that before I had a complete and total emotional meltdown, whisked me away to the casino for the day.

 

Through the years, I have had so many wonderful Mothers Day gifts and celebrations. There was the year one of them got me a bag of Doritos and a princess pillow. I mean, really, stuff I could use and need! There have been the years filled with homemade gifts from school(my favorite, and I miss every year).The years filled with flowers, and plants, and cakes and chocolates. And every single year since I became a mom, my husband Mark, spoils me.He makes me feel that he truly appreciates me as the mother of his sons.

The other night  I was chatting online with my son overseas. The asbestos sweater giver. I had asked if he was still planning on a visit home this summer. He told me his plans had changed and he wouldn’t be. And I began to ugly cry, in the dark. I wanted to have all my boys back, in one room again. Laughing. The kind of laughing that makes you lose your breath, and gasp for air. Because of  all the memories I have of being a mother, it is the laughter I recall the most. The things they said or did that made me just laugh until I cried.The way they knew I would get the joke, that I would just laugh. I hope when they look back, that is what they remember too. That their house was chaotic and crazy, and loud and messy. And filled with laughter. And that would be the best gift they could ever give me.

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Flea Markets and Scholarships

Our son Bryce received a scholarship yesterday for next fall. It wasn’t expected, so it was so awesome to see.It arrived by letter, snail mail style. As I opened it I was very happy for him, and called my husbands name to tell him. Standing in the kitchen, reading to Mark, he gave me the look we have become fluent in. The “someone can hear us” look. Our son Brett was listening to us. What was he thinking? Had I made him feel bad? I know he loves his twin, and all his brothers, but did he in that moment feel less than? And my heart sank a little bit.

We had promised to take Brett to a flea market. I had saved my tips from the salon, so my husband gave him some of it to spend as he wished there. We knew what it would be on, if he could find it. Video games, comic books, and candy.

Going to flea markets, stores, fairs, or anywhere in public with our son used to cause such panic and fear in me, in us. Positive he would wander off, get lost, or heaven forbid follow someone somewhere. But it has gotten better. A little bit.

When we arrived at the flea market, Brett made a quick exit from the car, and was on his way. We used to have to grip his hand so tight,struggling to keep him in our grasp. But now, we trust him, and we follow quietly and closely behind, making sure he doesn’t see us watching him. He scanned each booth quickly, weaving in and out on such a mission only he could understand.

My husband and I knew it wasn’t looking promising for him to find his treasures. However, at one point, I spotted him at a booth, money in hand. He struggles with math, and money skills, so wanting to make sure things were on the up and up, I quietly approached. “MOM”…..code word for, back off. I stopped, and he made his transaction, for a bag of taffy. We continued to walk away, when out of nowhere, Brett stopped and turned and dashed back. Convinced he had lost his wallet, I followed in hot pursuit, heart racing. He approached the booth, and reaching his hand in, grabbed his forgotten, almost empty Mountain Dew. I had to laugh at myself. I always assume the absolute worst in these situations.That someone had stolen his wallet, took the measly 30 bucks we had given  him and was already on a wonderful shopping spree at the flea market. But it was his soda. A dang soda.

Parenting four sons, on four totally different paths is such a balancing act. I felt so bad after going on and on about Bryce’s scholarship in front of his twin.Yet, I know, that the four of them are always beyond happy for each other and their success.And success is relative, right? I mean, just a few years ago, Brett would have had a major meltdown at the flea market, not finding what he wanted. Yesterday, as we were leaving the fairgrounds I apologized to him for it not being what he expected.” It’s okay mom.” That was a victory, that was success. And as usual, he taught me more than I could ever teach him.I can be happy, for each son, for each of their accomplishments,because none is greater or better than the next. Each step they make in the right direction, is a victory. Raise your Mountain Dew to that!

About

Speaking In Cursive. It seems that is what happens in my crazy house, my funny family. The mother of 4 sons, one with autism,I have learned what is important, what is worth crying over and what is …

Source: About

Life is Lumpy

Life is Lumpy. A good friend would tell me that all the time.He was right.

I have four sons. All born within four  years.It was a blur, a whirlwind. I often refer to it as my three year coma.I literally can not remember three of those years. I survived on diet coke and no sleep.Not unlike most young moms, I am sure.Trying to do it all and barely doing anything.Before I knew it, they were all in school.And that is when our life changed forever.

When my twins were in kindergarten we received a call that our son Brett was having a seizure. Seizure? What? We hadn’t noticed anything before, we knew he was behind in some areas, but never did we notice a seizure.(Of course, now, when we look back, the signs were there.) As it turned out, that would be the least of our worries.Not only was Brett diagnosed with epilepsy, but eventually Autism.How on Gods green earth did we miss it? How were we going to survive this?

I like to say “if I don’t laugh I am going to cry” and that pretty much became my motto of parenting. I experienced the highest highs and the lowest lows. The doctor appointments, the specialists. The testing, the I.E.P’s, the meltdowns. Hearing the doctor tell you things your child may never be able to do, or learn. It is heartbreaking. It is not what you envisioned for your child, or frankly, for yourself. You  grieve for what YOU had planned for your child. Instead, you learn to accept the child you have been blessed with. That step doesn’t come easy or happen overnight.But trust me, it does come.

Here we are now, Brett and his twin brother Bryce having just turned 20.Things are very different for them.While Bryce is finishing his sophomore year away at college, Brett lives at home with us.We are struggling to find the “right” situation for him. Right job, right case workers, right everything.It is a daily struggle, to keep him on task of basic things.And it is a tightrope that  I walk daily to know just how to deal with him and everything and everyone that is involved in helping him.When your three other adult sons have moved out, and done what is typical, it shines the light even brighter on the son left behind.The other three all moved out in the summer of 2014, within three weeks of each other. My oldest, Tony,  graduated from college and accepted a job in China.Yes, China. Our second oldest Nathan, graduated from college and moved an hour away. (Come fall he is moving across the country.) And Bryce, left for college, where he has been on the Deans list all four semesters.Two of the three have serious girlfriends.They are doing what is “supposed” to be done.So sometimes, the grieving rears it’s ugly head again. I get mad, and I cry.I want everything for Brett, that his brothers have.I want him to be “normal”. Then, as quickly as those ugly feelings bubble up to the surface, Brett says or does something to snap me back into reality.He is the funniest human alive, he makes me cry from laughter He is Normal….his normal.And his normal is perfect.

 

 

 

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