Parenting a teen with Autism

While I have so far stayed true to the theme of this blog, finding the balance between the male and female energies in life, today I find the need to share some challenges. My efforts to remain positive and to “let go” have been greatly undermined by recent changes in my son’s behavior and the absolute helplessness I sometimes feel. It is truly a minute by minute situation and I am restarting constantly.

jason102012My son Jason is 19 years old and was diagnosed with Severe Autism at age 2. Through the years we have woven our way through all of the various treatments, cures, therapies, etc. with subtle effect and improvements along the way.  Being my fourth child and only boy, Jason has been an adventure and a learning process in many ways. Therapies and medications have been adjusted based on his hormonal changes and natural maturation process.

I would place Jason’s emotional level at about a two year old, his verbal communication about the same, his comprehension maybe younger (as far as we can detect) and his physical, intellectual and cognitive probably close to normal. This presents a unique condition of constantly opposing forces in his mood, social interaction and ability to comply with life’s demands.

During the past few years he has been taking Risperdal, an anti-psychotic drug that has been effective for some children with Autism in suppressing the behaviors associated with the condition. We have always trusted his health care professional’s guidance on this, but I have had periods of doubt about it quite often, including the fact that Risperdal has side effects that are the same as the behaviors it is supposedly easing.

Since my son is attending a school about forty-five minutes away from my home (and the only program in our area that suited his needs) he lives with his dad during the week. We made this decision when we separated due to the fact that my three daughters were attending school where we were living at the time (and where I still live today). I had to choose between removing my son from the school he was attending or moving the girls to where he was and taking them out of the school they were attending.  Agonizing decision, but looking back we made a good choice.

Recently Jason’s issues with self-injury and mood swings have increased. When he switched doctors from a pediatrician to an adult family medicine physician, the new doctor and Jason’s dad decided to wean him off of his Risperdal to see where he was with normal behaviors. That was as few weeks ago. Now, I have always wanted to take him off of medication and try other therapies, even natural herbs or remedies, but his father has been opposed to any suggestions I’ve made. He was never argumentative, just would change the subject and refuse to discuss or engage. It was frustrating. So when I was told that we were taking him off the medication I was pleased. I expected great things. We have been sadly disappointed so far.

Last week was the first full week without the medication. He started summer school and beat himself so badly in the face the moment his dad dropped him off that the teacher came running out to stop the car. When Jason came to my house on that Friday, his eye and cheek were swollen and blue, his jaw and temple area on the other side of his face was swollen making his face round and odd looking. He could hardly open his mouth due to the pain and swelling in his jaw.

He has been self injurious for many years now. He started out banging his head against the walls so hard that he put holes in them. One time he hit his head on the brick wall in the backyard and his head swelled so big it made him look like a space alien. Then he stopped banging his head and moved to banging his elbows. The joints would swell so much with fluid that they had to be drained quite often with a giant needle. He stopped doing that for a while then started hitting his feet and hands on the tables or door jams. This subsided and suddenly he began hitting himself in the face. Now he is literally punching himself with his knuckles in the face.  I have video of him in action and we have school records documenting this as well.

Yesterday I picked him up after work and brought him home. He seemed distant and agitated, but that was interspersed with smiles and affection toward me. His eye contact was nearly non existent, though he tried. His stemming and ticks were triple the norm and he seems extremely anxious. I felt like I was losing him. I started cooking his favorite dinner, and he kept asking to eat it. After I explained several times that it had to cook he suddenly started crying and when I asked what was wrong he jumped up and started hitting himself rapidly in the forehead. I tried to console him, calm him and eventually tried to grab his wrists to stop him but he overpowered me, pushed me away and ran to his room.

I quickly started a bubble bath and finally distracted him enough to get him to calm down and get into the bath. He stayed in the bath while dinner cooked and seemed relaxed. When he sat down to eat I noticed that he hardly opened his mouth more than an inch and had difficulty getting the food on his fork into his mouth. I spoke with his step mom about it and she told me she had been worried about the same thing but they had X-rays taken and the jaw seemed to be swollen but not damaged. That was a relief. Normally Jason would have jumped up from devouring his first serving and helped himself to seconds, but not this time. I offered him one of his favorite desserts and he ate less than half and set it down. Most of it ended up dripping down his chest anyway because he couldn’t open his mouth enough for the spoon.

After cleaning him up I gave him a Melatonin to help him sleep and put him to bed. He slept peacefully through the night and woke this morning about 6:30.

He would not eat any breakfast but seems to be in a better mood. I gave him a pain reliever just in case his jaw is hurting. When he refused to eat I asked if he hurt anywhere. He said, “Yes,” and when I asked where he grabbed his jaw. Just now, as I am writing this Jason came to me smiling and initiated our little “shave and a haircut” sound exchange. I asked if he is hungry and he said “Yes.” He requested chicken nuggets and I quickly complied. He is sitting on the couch now rocking to the music on his mp3 player waiting for his breakfast to cook.

When I talked with his step mom she mentioned that they will be taking Jason to a specialist in the next week or so to evaluate the next course in treating his behaviors. She and I discussed the medication options and agreed that an anti-anxiety drug like Lexapro may be a better answer.

With all of this disruption in our normally peace filled existence, I find myself searching for some grounding. I am constantly reminded that the greatest thing I can do for my child is love him. All of the other things are physical remedies for a biological condition. The deeper part of Jason just needs to be loved unconditionally and that I can do with ease. I know that the true nature of my son goes deeper than this physical manifestation of a person with Autism, he is a Divine being expressing himself in his own way. We are all learning as we go.

 

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Woman of a certain age

I had the opportunity a few weeks ago to play the lead role in a musical called Hats.  The experience began with a phone call from my brother-in-law Jesse asking me if I would be interested in “doing a show.”

redhatcheryl

I have mentioned a few times over the years that if a show came along that had something I could audition for, to let me know.  In my mind that meant something in the chorus or a minor walk on part.  I have some experience with community theater projects and entertaining in general, but the thought of a major role on a “real” stage never entered my mind.

Of course I said yes to the show, but still assumed it would be a minor role.  A few days prior to the first rehearsal Jesse revealed the role I would be playing. She is a woman about to turn 50 and the setting is a surprise birthday party thrown by her mother and some older friends.  The character, Maryanne, is not happy about the age or the party and certainly not interested in joining her mother’s friends in becoming a “Red Hatter.’

I was still oblivious to the situation until I began to read the script, learn the songs and saw the show programme as I was proofing my bio. I noticed “starring Cheryl Hunter as Maryanne…”  I asked about it and Jesse looked at me kind of funny, then explained that yes, Maryanne is the main character.

Now I was nervous. Not only was I stepping far out of my comfort zone doing a musical on a big stage, but I had a major role.  Add to that the fact that Jesse is the producer and his dime is on the line and I was feeling a little pressure. Once rehearsals began and I fell into a routine of practicing at home and staying very focused at rehearsal, I became more confident.

The most interesting thing about the experience up to that point was how the show and all that went with it seemed to parallel my life.  The character talks about wanting to be a writer but getting side tracked with life (kids and a job), feeling invisible as she ages, plus fear of all the physical changes and a general foreboding of middle age.

All of the things the character goes through are the very things I have been experiencing over the past couple years.  Now, I realize that the reason the play was written was to celebrate this time in every woman’s life and to share some recognition of the fears. But each member of the cast seemed to be living the life of the character she was playing in one way or another. It was emotional and freeing all at once.

Another thing about my character that made the experience so interesting was her raunchy humor, wit and sarcasm. While I tend to suppress much of my vulgar side to most who know me, my family must endure the real me all the time.  The role allowed me to truly be me.  It was amazing.

Finally, the story itself was a lesson for me. The last line I said at the very end of the show prior to the final two musical numbers was “Write your story, even if it’s just for you.”  This is poignant because whether writing, painting, creating music, singing or playing my bass I have complained to my husband and family that I am not inspired to do it for myself. I believe my creativity is not worthwhile unless it is shared. Those closest to me continue to remind me that inspiration comes from my need to turn inward, to commune with Spirit and refresh my joy energy. I should create from that place of joy regardless of when, if or who the result is shared.

So at 53 years old I am embracing the second half of my life still learning. In my head I still feel 30, in my heart I feel like a child and my eyes see the gentle signs of aging. I am beginning to see those signs as beautiful markers of each year on this planet. My mind is still an infant, soaking up everything that stimulates learning, this will continue until my final day of this life. Every moment is to be treasured regardless of pain, joy or circumstance. Life is for living, Love is for giving. I am alive and I love it!

Full Circle

I had the privilege of reading the first posts by my daughters Kristin Speak and Lauren Tuculescu in their new mommy blog entitled Minute For Mom.  The subject matter was familiar of course, since I have raised four children, but the depth at which my two oldest children plunge to discover their highest potential as mothers made me so proud.

I remember the trials and tribulations, joys and successes of motherhood like it was yesterday.  I remember feeling like no one could possibly understand what I was going through or how I felt.  Little did I know in those early years that each new phase brought its own set of challenge and celebration.  Looking back now I can see the transitions through each developmental stage and how my children reacted so differently yet so similarly to the experiences.  My reactions were equally varied based of the atmosphere at the time.

My first two were born during my first marriage, which was fairly traditional and conservative, and while he was a good father and husband I was not the dutiful housewife I think he had hoped for.  This made for an explosive relationship that was not conducive to a peaceful environment for the children.

By the time my second two children came along in my second marriage, my oldest two were ten and twelve with baggage that they certainly didn’t deserve or ask for.  These two wonderful preteen daughters were supportive and loving of their new siblings and when I became single again a few years later they were exceptional in their co-mothering duties.  I leaned on them for so much, knowing that this was the norm for many families all over the world, but feeling guilty all the same.

As my three daughters grew and we all dealt with identifying and eliminating the baggage, the day came when I could see a metamorphosis that has truly been one of life’s greatest gifts.  Watching my damaged little fledglings find healing and happiness and proudly spread their wings to fly away has lifted my heart like nothing else.

The oldest two are now mothers, having blessed me with a grandson and a granddaughter.  I watch as they navigate the mystery of motherhood to baby number one and am reminded of my own experiences.  Fortunately, these beautiful young women have a bright, confident countenance that drives them to achieve their highest potential as mothers.  While their pursuit of perfection may also drive them nuts at times, their children will never doubt the love and security that will be a solid foundation to build from.

The greatest gift a human receives is the opportunity to raise a child.  My wonderful husband Mike will tell you that though he has no biological children, the feeling of parenthood is deep and emotional for him. The greatest achievement is to watch your child grow into a better version of yourself, with all the traits you treasure most and non of those you have worked to bury.  Love is at the top of the list.  Unconditional love that is palatable and becomes the life ring that keeps one buoyed in the most treacherous of waters.

I no longer feel guilt, regret or disappointment in my own mothering because I know that like my own mother, it is a trial and error experience that is affected by many outside influences.  The most important thing we can do is Love, and I did that…I am still doing that.  Add to that my immeasurable pride in all of the beautiful children that I’ve had the honor of raising and I can feel that i have come full circle in my most important task for this lifetime.