Search

Speaking in Cursive

Walking through this extraordinary life.

Open Search
Category

autism

Even Here

My Faith was tested. It was pushed to the limits. I have never felt so helpless, overwhelmed and unprepared in my life. If it could go wrong, it had. 2019 was trying to kill me I was sure.It was trying to suck the life, Joy and Faith right out of me. Somehow, it didn’t. It made my Faith and my Joy stronger. Even Here, in the deepest, darkest days, Even here, I wasn’t alone.

Brett was admitted to the hospital August 4th. After a summer of sickness, and E.R. visits, we were prepping for his colonoscopy. My worst fears came true. As Brett began to vomit blood, I screamed for my husband to call 911. The tests confirmed Severe Crohn’s disease, a stricture blockage and ulcers in his esophagus. He was as sick as I had ever seen anyone. But it was different, he was MY Son, and I was helpless. I couldn’t fix him. He wouldn’t let me leave. So I stayed for almost all of his 14 days in the hospital. He wanted the room dark, blinds drawn, t.v. on E.S.P.N. ( he never watches sports) on mute, for 14 days. I had brought my bible and journal. So I spent time finding comfort in the Word. I was worried sick about Brett. They wanted to transfer him to a teaching hospital for possible surgery. I once again had to close my salon so I could be with him.( By the month of August I had shut the salon down a total of  almost 4 months. Two months for my broken arm, two weeks and a few days for when my parents were hospitalized and put into nursing homes and now this. ) Most days were spent quietly with Brett, while my husband worked.  My husband would come as soon as he could get off of work each day. But I felt so alone, in the muted darkened room. I had to reach up for help.

 

When the doctor names the pain you feel
And the air around you changes
When you don’t know what is coming next
You’re afraid to turn the pages
When the answers don’t give you relief
And they only bring more questions
When you wish that you could run away
But you don’t know what direction
There’s no waking up from this a bad dream
There’s no way to stop a slow motion emergency
Even here
In the unknown
Even now
You are not alone.   JJ Heller
 On the 8th day in the hospital, Brett was going to be transferred an hr away. I would go with him, in the ambulance, and Mark would join us when he could. That day also happened to be our 30th wedding anniversary. Earlier in the year we had booked a cute little cabin on the water for a get a way to celebrate it. As the summer went on we knew it wouldn’t happen, so we canceled it. I never thought I would end up spending it like this. The transfer was taking longer than expected. I was tired and weary and afraid for Brett.  My husband and I ended up saying some cross words to each other and in the midst of it he told me the company he had worked for 15 years would be closing their doors at the end of August. I felt the air leave my body.I stood still. How could this be happening. I know in that moment God took over. I felt a peace and calm, and I knew I needed to be there for Mark. I knew we would be okay. What I didn’t know, was that Mark had found  out about the job loss the day Brett was admitted to the hospital but wanted to spare me the stress. He knew I was beside myself over worry with Brett. So he took that burden away. I feel so badly he felt he had to. When the transfer was finally happening, I walked down one hallway with Brett on a stretcher and the paramedics and Mark walked the other way with the nurses. I turned, and quietly whispered “Happy Anniversary” to him as tears poured down my face. The nurses stopped in their tracks. These sweet women who had comforted Brett for 8 days were now comforting us. Mark came and gave me a quick hug and we said our goodbyes. I knew we were heading into so many unknowns, but I knew Who was going before me.
  Find me in the River
Find me on my knees
I’ve walked against the water
Now I’m waiting if you please
We didn’t count on suffering
We didn’t count on pain
But if there are blessings in the valley
Then in the River I will wait.   (Find me in the River by Delirious)
 Brett was transferred to one of the best hospitals in the country and got amazing care. We were close to family there for support, food and a place to rest our weary bones.  They ran more tests and confirmed the severity of Brett’s condition and even added more to it. Brett was diagnosed with Severe Fistulizing Crohn’s Disease. Which the Dr. said was good news bad news. The bad news was obvious, the good news was that it is almost a guarantee for insurance approval for Remicade. Remicade is a medication administered via infusion to try to bring on remission. I felt relief and fear all at once. But this is what I had spent all summer praying for. Answers and a plan. Just give me a plan. I live and die by a schedule, a calendar and a plan.  This year had thrown all of that to the wind. I knew God was teaching me, His schedule, His calendar, His plan. I need only be still. So after two weeks in the hospital we were going home. A bag full of prescriptions and a plan. He was quickly approved for the treatment and he started them 3 weeks later on my 50th birthday. Honestly the best present I ever could have.
I had been feeling sad about my birthday, but not for the typical reasons. I was sad because my mom couldn’t remember it. She has dementia, so I knew eventually it was coming, her forgetting important things, but I wasn’t prepared. I was born on their 16th wedding anniversary, so she always had a speech she gave to people about me. ” This is my baby daughter Mary, she is the 6th child, 6lbs 6 oz. on our 16th wedding anniversary.” She literally said this for years, to any friend of hers I was meeting for the first time. So when the days were drawing closer to our special day, I would ask her “Mom, do you know what day is coming? “No”. she would say. I would tell her it was her anniversary, then ask her what else happened on their 16th anniversary. ” I don’t know unless it was something special.”  Gut punch. Every time. But I kept asking, because I just needed my mom. I would quietly say, “It was me mom, I was born on your anniversary.” So to have the distraction of Brett beginning his treatment was exactly what I needed.

Exodus 14:14

14 The Lord will fight for you; you need only to be still.

As difficult as it was on us to have my husband lose his job, I also feel it was Gods perfect timing. I needed him home, we all did. We had been through so much this year, we were so overwhelmed, so we all needed the break. The lord is faithful and He provides. We had savings, and I was back at work. Mark was able to be home with Brett in the early days of his treatment. I could breathe easier knowing he was there. But then the rains came…the flooding rains. Our area was hit with over 7 inches, and we had a leak in our roof. Of course we did. I actually laughed, because, why not? I mean what else could happen, wait don’t answer that. So 13 grand later we are getting a new roof. ( Our second new roof this year as we had to put a new roof on the salon building after the tornado damaged it. No, I am not kidding). And God is still faithful. He never said we wouldn’t suffer, that wouldn’t have trials. He simply asked us to lean on Him. So I do. Every morning, with my coffee, I sit quietly with my bible, my journal and my devotional. And I thank God for getting us through. For the patience He is helping me learn when things don’t go my way on my time.I am learning I can’t and don’t control everything. Those were my lessons I needed to learn. My kids always tease me about how often I ask them if they are okay, if everything is alright. It is a habit. While Brett was so sick, I would probably ask him 40 times a day. I was so worried I would miss something. Every time the poor kid entered the room I would grill him. I am working hard to let that go too. Brett’s therapist mentioned that maybe I could try to only ask a few times a day. So I am trying. I bite my tongue, sometimes it works.

 

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2

 

As I sit quietly here tonight, I am in awe of the work God has done for my family this year. This year filled with trials and tribulations. God is good. Brett is doing amazing, he has gained over 30 lbs back. He smiles and cracks jokes again. Mark starts his new job tomorrow. It was such a blessing having him home. He completed almost every honey do list I had. He was here for Brett when he needed him most. And for me. And I have a peace and calm I haven’t had in a long time. A clarity to see things how they really are. Each night when I lay my head to the pillow, I say “Help me Jesus.” He hears our prayers.

Even here.

 

3

Another New Normal.

Two years. We started this journey two years ago. Doctor appointments, tests, nurses. Two years of googling symptoms, of thinking I could cure him myself. Two damn years of worry, and fear. Today, I exhaled.

  My son Brett, started losing weight. Slowly at first. Enough to notice. Of my four sons, he was my “husky” one. So 20 lbs at first wasn’t alarming. It was more a wonder. Has he stopped just shoving food in his mouth, not caring what it is? Is he starting to control some of his oral fixations? Having autism, food for him is comfort. Certain foods, more than others. Anyone in the autism community knows all about  the chicken nuggets and bacon obsession. So could he be maturing?  Not wanting to miss anything, we made an appointment.

The Dr. Brett saw for years had passed away, so we would be seeing a new one. I was leery as Brett doesn’t do well with Dr.’s or lab work, or anything related. His old Dr. understood him. Knew how to talk to him, to get him to explain his symptoms. I was hopeful we would be lucky twice. As soon as we left his office, I had a gut feeling. That nagging feeling that this wasn’t the Dr. he needed. He seemed to blow us off, told us not to worry, his metabolism was probably changing. I so badly wanted to believe it. So I left the office, praying he was right. Brett also had a rash on his chest that wouldn’t clear up, he was not worried on that either. He said he would do some labs and get back to us.  When nothing showed up, I should’ve been happy. I wasn’t . I knew there was something wrong. But I did nothing. I let my fear of ruffling feathers, of making a scene, of using my voice stop me.

Over the next year we made multiple trips to the Dr. They ran more lab tests, but nothing further. Because he is on disability, and has long term care funding, he has a personal nurse, She would come often to monitor him, check his BMI. She had him drink ensure. He was now down 40 lbs. We were doing everything we could think of. Everything. I am so mad at myself. Furious. I should’ve marched in there, somewhere, and had a sit in. I should’ve been the mom in Terms of Endearment, when she demands they give her daughter the medicine. I should’ve screamed. I couldn’t find my voice. I will never forgive myself for that.

During all this time, my life was in a tailspin. My parents are elderly and failing. At the same time. So my siblings and I had to place them in a nursing home, sell their home and grieve all that was. My head was somewhere else. I stopped fixating on Brett, I had so many irons in the fire. I had fallen and broken my wrist so was off work for 2 months. I was worried about bills. I lost focus. It happens, I know. But as a special needs mom, there is this saying, ” I can’t die, like ever.”  It means that he will need me, us, forever. There is no moving out, no getting married. I dropped the ball.

On June 1st, Brett got sick. We thought it was a 24 hr bug. At least that is how it presented itself. He wanted me to sleep on the couch with him. To watch over him. Like I did when he was a child. As quickly as it came, it was gone.  Until Fathers Day morning at 4 a.m., when it came back. I asked if he was in pain. He said yes. I asked if he wanted to go to the hospital. Surprisingly, he said yes.  Thank God he did. He found his voice that day.

I am incredibly grateful for the NP he saw in the E.R. . As usual when we go into unfamiliar situations, I will whisper “he has autism” to whomever has to interact with him. It matters. It changes how he reacts to them, based on how they speak to him. She Listened to him, and to my husband and I. She showed concern and compassion. She immediately ordered a series of tests. Including a CT Scan and an ultrasound. For the first time in 2 years, I felt heard! After several hours, she came back in to tell us.  She sat down next to Brett, looked him in the eye, and said “I think we figured out why you’ve lost 60 lbs. You have Crohn’s Disease. I was simultaneously relieved and panicked.  Brett being Brett looked at her and asked ” Is it curable or is it like an STD?” Oh how we needed the levity. She laughed and then honestly told him ” It isn’t curable. Our goal is remission.” As hard as it was to hear, I was forever grateful. I looked at her and just smiled. I was crying inside. I was angry at myself. But I was happy we at least had the start of an answer.

Since June 17th, we have had many appointments. We have had many setbacks. We have made emergency calls to the specialists. There is more medication than I can keep track of. Today, we had a very big scare, and we ended back at the hospital. But in the end we were put at ease. He has more testing coming up in two weeks, where they will determine what medications will hopefully put him into remission, because right now he is in a flare, a serious one. My husband and I are stressed beyond limits. People tell me I look tired. I am. Not sleeping from regret and worry will do that to a gal. We truly live minute to minute. That is how quickly this disease acts on him. And we live in this new normal. A zombie like state. I hover over him, picking up his every signal only I can decipher.  We hope for good news with every new test they run. We pray what he eats stays down and gets absorbed. He is severely under weight, anemic and tired.  But he is still Brett. He still says highly inappropriate things, things that make us laugh.  He spends more time with us now, which is new, out of fear I suppose. He is scared, so we are his safe place to fall.

I have relied heavily on my faith in Jesus. For comfort for Brett, for peaceful nights rest for him as he struggles in pain or nausea. I have prayed for patience and grace for myself, so I don’t lash out at others around me, because there is a tornado inside me. Calm, I pray for calm. In my mind as it races and jumps ahead to years my husband and I are older, and beyond. We can’t die. I have cried countless tears, at home, or work. I have many  a

client grab me in their arms and hug me. They see the load  I carry.  I have been held up in prayer by our friends and family, and people I don’t know. I believe it is working. I am working on letting go of the anger I have at the Dr and Myself for not speaking up. Fool me once, that is what they say right? Never again. I am so impressed with his Dr and NP and nurse right now, I can not sing their praises enough.  His nurse today spent a half hr just going over his CT results with us. She knows how to talk to Brett, and understands his humor. At one point in the Dr’s office today Brett had enough, dropped an F bomb and stormed out. We looked at her as she laughed along with us.  “Welcome to the wonderful world of Brett “. we said.  Our new normal.

12

A Different Journey

We had another meeting, for our son. Another meeting for another plan, another job. It was one of hundreds of meetings over the past 15 years, and certainly not the last. However, this time, one phrase kept going through my mind. A phrase I borrowed from a friend. She had posted to her Facebook page “Not my Journey.” It clicked instantly in me. And while I had no exact idea what she was referring to,it hit home with me. Square in the gut. Not my Journey, my new Mantra.

As the meeting began, and we were introduced to some new case workers, my son didn’t want to sit down. He wanted to stand. It bothered me, but, he was comfortable standing, and was being involved, so standing worked fine. I have learned slowly over the years to not over take the meetings or conversations. But I somehow would either whisper, or give a knowing glance to the case worker, making my ideas known. The things I wanted for my son. What I thought was best.And while there was a time and place for that, maybe that time and place are gone.

I tried my best to sit quietly as they asked him questions. The usual questions that frustrate him to no end. “What are your interests? What type of job do you want? Do you want to work with people?” etc.  Most times, I would butt in, adding my two cents. Which in turn would ALWAYS result in my son looking at me with contempt, telling me to be quiet. Yet I would figure out ways to speak over him. Today, I started to. I tried asking questions, about classes at the tech school. “Mom, I don’t want that. I don’t like classrooms. I learn better on my own.” He was right. And the phrase that had been bouncing around in my mind settled firmly. Not My Journey.

Yes, this scenario with this son, is completely different than the scenario with my three other sons. Yet, it is the same. My other sons have all made their own decisions when it came to where they went to college, what they would study, where they would move. And while with this son, we HAVE to have perimeters on decisions he makes, we have to guide him as best we can, in the end, it is Still Not My Journey. We would never allow him to do anything unsafe or not good for his future. But I will no longer put My wants and needs into his journey. I didn’t for the other three, I won’t for him either.

I would Love to have input with all of my sons on their decisions.But, in the morning, when their feet hit the floor, they walk a path for themselves. If I had my way, my sons would all live nearby, giving me more grandbabies than my arms could hold.However, as I sit back and watch my adult sons continue on their journeys I see that probably won’t happen.Because their roads wind a different way than mine. Beautiful all the same.

I am hoping this New Year helps me to let go of all the things I so desperately want to control, but know I shouldn’t. I hope it helps me relax and enjoy watching where all their journeys take them, And maybe, enjoy where mine takes me.

0

A dog named Rowdy near McCarville Road.

We had planned this anniversary trip for months. Celebrating 27 years of marriage. My husband had found a beautiful cabin, in the middle of nowhere. I was so excited. He had mentioned there would be no internet or cell phone reception. I was actually happy about that. Until we got there, and panic set in. How would I reach home? What if they needed me? What if something went wrong? But what if it didn’t?

IMG_0105About 10 minutes from our destination, my cell phone stopped. I was regretting booking this place. So many things that could go wrong. We were entering another Fall of goodbyes with our children.The oldest still in China, The 2nd oldest and his girlfriend about to move to Seattle, and one of the twins and his girlfriend ready to return to college for their junior year, about an hour and a half from home. I was filled with angst, and sadness, excitement and fear for all of them. Happy I still would have our Brett at home with us, and of course my 3 puppies.But I felt as though things were starting to spin out of control again,things moving in all different directions, none of which I could control.So we had planned this trip knowing I would, we would, need it. You can’t just make impulsive trips when you have a child with autism(adult now). You can’t leave him alone, so you plan it around your other adult children, to be home. I knew they would be okay, but we have never, ever been out of communication when we leave home. Never. Suddenly we had no choice.

As we pulled into the driveway of our getaway location, we were immediately met by two adorable Jack Russel terriers.They began to bark and ran up to our car. Instinctively we both got out and started calling to them, to come to us. They did.Looking around we couldn’t see the caretaker. He had told us the unit would be unlocked, to go in. So we did.To a beautiful cabin,done all in North woods design. It was stunning, and I should have been instantly at peace, but my heart was racing, and I was in panic. What if they needed me.

We went outside, and I sat on the ground, as did my husband. Here, coming from the green fields on the property came Trixie, the momma dog and her son Rowdy. Within seconds they were in our laps, licking us, kissing our faces. I didn’t know I needed them, until that moment. I think they needed us too. We walked the property, looking for Bill, the owner, as these two dogs became our shadow and our tour guides.With each step I could feel my heart slow and my mind relax. The what ifs that had paralyzed me, were becoming a distant memory. Later , Bill came to our door. My husband explained our home situation, and our need to have some communication with our son. He told us we could use his home phone at anytime. At that moment, I took a deep and soul cleansing breath.

We sat and talked with Bill for a while about his puppies,and how we just loved them.He told us how smart Trixie was and could do many tricks, but Rowdy was as “dumb as a stump”. He explained how at one point his daughters had County Fair award winning chickens, until one day, he came home and saw feathers flying, and a chicken hanging from Rowdy’s mouth. That is when I fell in love with a dog named Rowdy.

Over the next two days, we would go for long walks down McCarville Road, a winding country road where there must have been 50 shades of green. From emerald to sage. There was mile after mile of fields of corn. The hills, valleys and ridges filled with acres of wildflowers and birds. We would walk and talk and laugh. We would take in the beauty and the sounds all around us. We were living in the moment, not wondering or worrying what could happen.We just were.We put on over 12 miles in 2 days. I craved more.

Each time we appeared back on the property, there they were. Trixie and her boy Rowdy. Eventually, Trixie took a step back, to let her son get the attention, and lead the way. He took us out on the property to the trout stream. He jumped in, then rolled around on the grass. Then he would jump into my husbands lap. He was so enjoying having this love heaped upon him.Then he would come by me, doing the same thing, lavishing me with his love.And Trixie faded further into the background. Like she knew she had to let him go.

On our final night, we sat outside with Rowdy, Trixie nowhere in sight. I thought to myself,I know how she feels.We have them, we raise them, and eventually they leave.We fed Rowdy some scraps of our dinner and held him in our laps a few more times.We both felt an immense and deep love for him. Silly to some I know, but there was a connection there.My husband said “it’s like they were there just for us.” I believe they were. We said our goodbyes to this new boy in our lives, and entered our cabin, closing the door behind us. Rowdy wouldn’t leave. For over an hour, as day turned to night, he sat there, facing the door, waiting for us.I peered out our bedroom window, watching him, almost in tears, knowing if I opened the door, the goodbye would be that much harder.And I wondered where his mom Trixie was, and how could she not be worried sick over where he was. Then I realized, just because they’re out of sight doesn’t mean they are out of mind. Sometimes you just have to let them go out on their own, knowing they eventually find their way home.

0

His brothers keeper

And love will hold us together
Make us a shelter to weather the storm
And I’ll be my brother’s keeper
So the whole world would know that we’re not alone

I shouldn’t have been surprised when the doctor told me I was having twins, simply by looking at me from across the room. Twins are everywhere on my husbands side of the family. Twin sisters, nieces, cousins. Yet somehow I was still shocked. How in the heck could we handle two more babies. At the time we already had a 4 year old and 2 year old son. So at 14 weeks along when the ultra sound showed two more boys, we were speechless.But we were so excited at the endless possibilities about to come our way. We had no way of knowing what the future actually held.

They came into the world fighting, 6 weeks premature.Yet, were by all appearances healthy.They continued that path, for the most part, until about 2 yrs of age. That is when we noticed some delay’s in Brett, but looking back, I see we were in denial about just how many and how severe.The summer before kindergarten they had their screening. The teachers pulled me aside and said they wanted to put them in different classrooms come fall. They were concerned that the twins were relying on each other too much. That Bryce was worried about Brett, and so he always “helped” him.The teachers felt it would help Brett become more independent. I reluctantly agreed. Honestly, I was more worried about the inconvenience it might cause me, having to deal with two rooms and two sets of rules.How selfish I was. So I agreed.

Every morning, I would walk them to school. I would watch Bryce go into his classroom, and I would hold Brett’s hand as he cried,wanting to go with his twin, his best friend.It was heartbreaking.They wanted to be together. They needed to be together.But, they shouldn’t be together. They were two different souls, on two very different trajectories.Just how different I had no way of knowing. I also had no way of knowing, at the time, how much pressure I was about to put on Bryce.Asking him to be my eyes and ears when I couldn’t be.To be his brothers keeper.

Once in 1st grade, I asked that they be placed in the same homeroom. Seeing as Brett would be pulled for special ed most of the day, I felt being able to go into the same room every morning would help ease the stress.They obliged, and from that year until high school, they were put in at least the same home room.And while Brett struggled, and fought every step of the way, Bryce was labeled Gifted and Talented in 2nd grade. So I was dealing with I.E P’s and College for Kids. I was straddling a tight rope. So in my ignorance I put a lot of responsibility on Bryce, to watch over Brett. Every morning I would say to Bryce,” Make sure you sit with him at lunch, make sure you help tie his shoes, make sure you help him zip his coat, make sure you help him with his locker….” the list would go on and on. I did this every damn day for 8 years. I honestly had no idea the pressure I put on him. My husband and I jokingly referred to Bryce as “the informer”. Each night we would say “how was school today, what did Brett do?” He would fill us in. Telling us of the events of the day, and all things Brett. “He couldn’t get his snow pants on mom” or “He fell off the jungle gym at recess, mom.” Each day we would hear all about Brett’s day, and we could feel the sadness in his voice. He was so concerned about his brother, his twin. And he was my spy, so I felt like I knew everything that was going on. Recently we came across an old home video. Bryce is talking to his brother Nate about how Brett sat alone at recess.”Bryce you have to play with him” Nate said. “I know.” he said.

I saw the twins, as just that, Twins. A duo, a group, yet a singular being. We didn’t say their names individually.We said “the twins” or “the babies”. Somehow, I had lost that Bryce was his own person apart from his brother. He had his own dreams and goals.I just was too busy making sure he took care of Brett when I couldn’t. I didn’t even see the pressure this put on him.Until the summer going into their freshman year. There would be no more same homerooms, or lockers by each other. Their paths were about to diverge, and there was nothing I could do about it, except let it happen. Bryce came to me one morning that summer with such a concerned look in his eyes. Those that know him personally, know that Bryce is a man of few words. He does not seek nor want attention. He avoids it. And he certainly doesn’t share his feelings. So I knew something was bothering him.”What is it?” I asked. It seemed like an eternity but then he said,”Mom, who is going to open Brett’s locker, or make sure he gets to the right class? Who is going to make sure he changes into his gym clothes?” He kept going, asking me, basically, who is going to do for Brett what he had done all those years? That is when it hit me, what I had done to him .I had made him be responsible for someone else. “That is not your problem honey, that is mine.I want you to enjoy high school, and do the things you want.Brett is my responsibility, not yours.” And I felt so ashamed, and sad. How did I put so much pressure on him?

As expected their high school years were quite different. While Brett had I.E.P’s all through high school, Bryce had advanced classes. He was gifted academically and athletically. He had more friends than I could count. His high school years were filled with social events, and prom and homecoming courts and with all conference awards for sports. He was Bryce. Singular. And while he would still fill me in on things he heard Brett had done during the day, it wasn’t expected of him to know or to tell. When the time came for Bryce to choose a college, and move away, we left that up to him. It was his life he had to live. Not ours and not his twins. He continues to amaze us with his academic abilities (Deans List 4 semesters straight!)  and with his quiet strength and compassion.While away at school he would text everyday, usually asking “what is Brett doing?” I think, maybe, even without me telling him to, he would’ve watched over him all those years. You see, he never stopped being his brothers keeper.

3

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.

1

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” →

0

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!

0

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.

 

 

 

1

Blog at WordPress.com.

Up ↑