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Speaking in Cursive

Walking through this extraordinary life.

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autism

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.”

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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