Archive for the ‘Aspergers’ Category

With the Wind Just Flying Through My Hair

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Like many of you when driving, my mind races with thoughts of things I have to do, problems to solve, errands to run, crisis to deal with and so forth. Yesterday was different. As I was driving on a back road to get to a client’s home, I found myself following a gentleman, (or gentlewoman as I couldn’t tell; the only clue being the gray hair on the back of his/her head.) Because it was an awesomely beautiful day after a horrendous winter of being snowbound, the top to the MG convertible was down, sunlight shining happily on the occupant. Looking at the car, I recognized it as similar to the one bought with my own money when I was a teenager. My pride and joy that was purchased with my dad, a gentleman who did not generally interact with people, including me. Buying that car bonded us in a way that still brings tears to my eyes. The fact that HE always wanted such a car and possibly was living vicariously through me didn’t dampen my extreme love for him, even when he borrowed it for a joyride himself.

I loved driving my little MG, especially with the top down, and joyful memories flooded back to me while following the car. That was a happy, carefree time in my life. Not that I have regrets about anything I have done since then, including dealing with five difficult children, but remembering being young and without worries induced a sense of euphoria. My current thoughts and worries disappeared, and I became one with that little car. Instead of a stranger driving it, I imagined it was me. My own windows were rolled down so the wind was flying through my hair. My radio was playing songs from the 70s, turned up very loud so it could be heard through the whoosh of the wind. I sang along to the songs, surprised the words came to me so easily. And I was innocently, thoroughly happy without a care in the world.

When the car turned off onto a dirt road, I wanted to scream “No! Stop! Let me follow you!” but of course I didn’t. Instead, the happiness of this memory was etched in my mind. It still gives me a warm glow when I think about it, and I am smiling as I type this.

My thought is; it is easy to get overwhelmed with every day problems and issues. Making time for ourselves may be almost impossible. Look for unexpected joys and happiness, a grandfather walking down the street holding onto a toddler’s hand, the sunlight streaking through the clouds, the flowers bright and blooming, or an old memory that strikes you at unexpected times and makes you smile. Sometimes we have to make our own happiness in unconventional ways, but we all need to have joy in our lives. You just have to look for it.

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

Dad and Daughter shared Ice Cream

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My heart has been very heavy lately, which is a feeling that I am very unused to. The fact is, as my children age, some into young adulthood, their problems are more real life problems, not just a tantrum in the grocery store. 2 of my younger children, with as many good traits and skills that they do have, do not having the capacity to be fully self-sufficient as adults, including incapacity to maintain a paying job. Yes, SSI is a possibility when they are adults, but even that provides only poverty level income. They are my family and my financial responsibility, which necessitates looking at the ability of our extremely diminishing finances to care for them during their lifetimes.

Although hubby and I both work, often 6 days a week, and are considered solidly middle class, our bank account does not reflect this. Every time Marie has a PTSD episode, (every 6 weeks to 2 months,) the ambulance bill exceeds $1000, money that is not reimbursable. (She requires additional emergency personnel because restraining her safely requires at least six, strong professional emergency adults.) We have funded one college tuition, and are currently funding another at expensive colleges to best meet the special needs of my children, (for which they received no financial assistance because we are, after all, “middle class”…) In order to attempt to give them the best education to be able to succeed despite their disabilities, we subsequently have taken a large second mortgage on our home. And then a third… Hubby and I live “paycheck to paycheck”, as I am sure many parents of children with disabilities live.

But I digress…what I was saddest about is that Steven now has partial custody of a beautiful, vivacious daughter who is one year old. (Note to parents: make sure you talk OFTEN about birth control to your teenagers, especially your teenagers with disabilities…) He, and we, do not have any extra money to support her in the manner to which we are accustomed to supporting our children. With his Asperger’s (and extremely capable skills in caring for animals,) Steven is a doting dad. Not working, he has tons of time to spend with her and can generally be seen sitting on the floor of the living room playing with her interactively, rocking her for a nap, singing her nursery rhymes, or taking her in the large, fenced in back yard to swing and explore and play to her heart’s content. What he does not have is money to pay for her needs, and this breaks my heart. This morning, he asked if I have any “change” and if he can go look in the car if there are any quarters that have fallen behind the seat. At last count, he’d managed to scrape up $2.19.

Driving home today, I was stopped by the light near our house. On the corner is an ice cream stand where our family often used to take a walk for ice cream. The kiddos would giggle over whether they would get the chocolate jimmies or colored ones, (the sprinkles were free!) Today, I noticed the young man sitting on the picnic bench. Across from him was a stroller with a young girl in it. Both had tan skin and wild, curly black hair. Holding a small container of ice cream in his hand, he was using a spoon to feed her, laughing and playing the “airplane” game to put the ice cream in her mouth. She was giggling also, throwing her arms in the air as if to say “wheeeeeee!” after every spoonful. Steven exhibited pure happiness, that special kind of happiness a parent has for their child. They were joyful and the fact that she wore cheap diapers and wore hand me downs that didn’t always fit did not matter at all. Suddenly I felt a little bit better about not have any money, because Steven taught me today that money does not makes life purposeful, but it is love, which is free. Life is good!

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

I’ve Never Been So Happy to be Sick!!!!

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Just like everyone else’s, my life sucks from time to time! This past month has been one catastrophe after another. Marie, my daughter who is deaf, had again been hospitalized due to a dangerous PTSD episode. When in a dissociative state, she downed staples in an effort to kill herself. Ever the optimist, I was hoping against hope that her memories of severe abuse would begin to soften, maybe even heal. Alas, not yet…this will be a lifelong battle.

My son Angel, who had just begun to drive, was involved in a rear end collision. While slowing down for a red light, KAPOWEE! another car hit him in the rear, pushing him into the truck in front of him. He was briefly hospitalized for whiplash, but the emotional impact was even worse. Sleeping is a luxury he no longer enjoys; wild fears and thoughts flood his already befuddled mind. He has stopped doing the things he used to do, clearly depressed that his means of freedom no longer sits in the driveway. Through no fault of his own, his major pride and joy, his ability to drive around and help others all day, has been destroyed. The car, safe and well running, was bought new in 2008. The insurance company only paid the Blue Book value of $4200. Because we do not have additional financial means, trying to find a car for such a small amount of money has been a real challenge, and every day that goes by without a car for Angel pushes him further and further into depression.

Marie’s recent birthday party was ruined when Steven “acted up”…having a full fledge outburst. (He has a severe sensory deficit with which he can not tolerate crowds or things not in his regular schedule. I should have had the foresight to arrange for him to be elsewhere.) Steven punched a hole in the wall and swore obscene obscene obscenities, (I know most obscene obscenities, but he came up with a few that were even more hard core.) As he stormed off down the street to settle himself down, the damage had already been done. Mortified at this behavior that most of our guests had never seen, everyone left, making a bee line for their cars, children in tow. Marie, who in her deafness had not heard the commotion, had been fishing on the dock behind our house. When she turned around, everyone was gone! She was quizzical at first, but not being a real “people person”, she took it in stride, especially because everyone had left their gifts for her!

My own work has been more difficult. The agency has hired a public relations person, and suddenly referrals have been flooding in. With an exponentially increased workload, putting in 50 hours a week has not been uncommon. What HAS been uncommon is the wrenching ache that developed in the pit of my stomach. Food would spew out of my stomach a half hour after I’d eaten. I felt awful, but I trekked on, saltine crackers and ginger ale bottle in tow. All my life, stress did not bother me. I could handle anything! No problem! Que sera sera! A little stress was not going to deter me from my job duties! (Like a mailman, neither ran, nor snow nor dark of night would keep me from my mission.) But as the stomach ache dragged on, my enthusiasm waned. I actually became depressed! My life, as I knew it, was over… or so I thought…..

After two weeks of eating nothing but chicken rice soup and saltines, I dragged my depressed little body to the walk in clinic. Taking one look at me, they sent me to the hospital emergency room where an intravenous was started to alleviate my dehydration. Laying there, I watched several bags of liquid force fed into the little vein in my hand. They did many tests, some to which I may have objected but I was too weak to stand my ground. Lo and behold, I was really sick! It wasn’t stress! It was salmonella poisoning from an egg breakfast at a local diner two weeks previously! Although I lay there on the gurney still feeling ill, happiness filled my heart. I was sick, not stressed! Life would return to “normal”, including all of the small tragedies and heartbreaks and problems associated with having five children with disabilities. But I could handle it! Life would go on!

Jiggles, Coat Hoods and Personal Space

images-2 Raising a child with a sensory disorder, whether autism or not, is always a challenge. When younger, Steven was the type of kid who would have a huge meltdown if there were tags in his shirts or seams in his socks. Meeting new people was too overwhelming, and a change in his schedule would send him into a tizzy. Holidays were disasters and birthday parties…forget it!
Not used to going out to restaurants because of Steven’s behavior, we threw all caution to the wind and went out to a dinner buffet for my 35th birthday. We chose a very large booth waaaaaaayyyyyy in the back of the restaurant, away from the noise and the crowds. Six year old Steven, who was still on a liquid diet due to sensory issues, curled up in a ball in the corner of the booth. He pulled his hood up over his head to block out surrounding activities and had a jiggle toy in each hand which kept his fingers busy. Giving him a wide berth of personal space, I was pleased as he sipped on his can of Ensure and was part of my birthday dinner. We talked in a soft, low tone and Steven even participated in the conversation from time to time.
It was a delightful night out…until SOMEONE told the staff that it was my birthday. (I suspect is was my youngest son, Angel, who was always selfishly delighted when Steven acted up, thus in his mind reassuring his place as the “good son”.) The staff came over with a lit candle on a cupcake, and sang Happy Birthday in out of sync voices. Steven immediately jerked up from his position, covered his ears and started to screech. He threw himself on the floor under the table and started banging his head against the wall. The happy moment was gone. I imagined people were looking at us as though we were the worst parents in the world! For the first and only time in my life as a mom, I emotionally stomped out of the restaurant in tears, bemoaning the fact that I couldn’t even have a normal, birthday dinner without accusing eyes watching as my husband carried our screaming child out. I was sure they thought he was a spoiled brat who couldn’t behave. Little did anyone know that he had been born to a homeless, schizophrenic mom addicted to heroin and cocaine and that he was so emotionally fragile in those early years that we could rarely leave the house. Little did anyone know that our family had worked hard to help him develop to the best of his abilities, working on his sensory issues so that he could fully participate in our family life to the best of his abilities and that it was a huge accomplishment that we were able to go out to the restaurant in the first place.
Both Steven and I calmed down quickly in the car and life returned to normal. Little did anyone know how deep our love and acceptance was for this child and for all of the issues that came with him and for all of the issues which were to come.

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For more stories about Steven’s childhood, please, read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

The ABCs of ADHD Redux

I wrote this post more than five years ago. These words were expressed when I was working full time and trying to raise 2 kiddos with ADHD, 2 with ADD, and 2 with RAD. I have cooled down a bit, and things have improved immensely. (I know many people are anti-medication for good reasons, but for me, my children would not have survived with out it.) I have nostalgia for several of the comments, and say “GOOD RIDDANCE” to the things I don’t have to worry about anymore!
And so, without further ado, The ABCs of ADHD redux!

I’ve read the articles and books on ADHD. I know the discipline methods, positive reinforcement, rewards and time outs, the methods of Ross Green, sensory diets, nutritional preferences and the medications that work best. But I also know the realities of ADHD. In real life terms, the ABCs of ADHD/ADD are:

Attention! Always on alert for dangerous situations due to impulsive behaviors, such as running across streets without looking, grabbing a butcher knife to cut the end off a banana, running up the down escalator, and grabbing the dog or any other animal roughly and the dog (or other animal) retaliating by biting (or scratching.)

Be careful! Be careful! Be careful” is the parent mantra.

Climbing climbing climbing: out of the crib at age 15 months, out of the bedroom window when a teenager, on rock walls and curbstones and couches.

Don’t touch that! Don’t do that! Don’t hit her! Don’t pull that! Don’t eat that! Don’t hurt it! Don’t break it!

Exhausted parents trying their best to keep up.

Friendships are difficult.

Go! Go! Go! They’re always on the go!

Helpless parents, unable to control their child’s behavior, especially embarrassing in the grocery store under the staring eyes of others, judging them.

If only he’d… If only she’d…. Parents dream for a different lifestyle.

Jumping Bean: he goes here and there from friend to friend to friend, never staying long enough to establish a real friendship.

Kitchen walls are written on, cupboard doors have nicks in them, curtains are ripped, bedrooms are messy.

LOVE. Parents give unconditional love, but the behavior doesn’t change because the ADHD remains…

Medication? Medication? Medication? Should I use it or should I not?

Not paying attention in school so schoolwork suffers: not paying attention for homework, so it’s a nightly fight: not paying attention to other’s feelings, so keeping friends is difficult.

Overload happens easily and tantrums result. Keep it quiet. Keep it simple. Keep it under stimulated for peace.

Psychiatrists have become my best friends!

Questions! Questions from them all the time! Especially hard to escape when you are stuck riding in the car together.

Rewards for good behaviors; cuddles, high 5s, stickers, ice cream, Playstation, tv.

Self-esteem is low; it seems as though parent’s and teacher’s patience is limited; always the troublemaker, always in trouble.

Time-outs in the seat till we’re blue in the face. All the time spent in time-outs would add up to a year in the life.

Understanding is needed from parents, family, friends and teachers; understanding is often in short supply.

Very draining on all, child and adults.

Whining, whining, whining until parent’s ears hurt.

X-rays, CAT Scans and emergency room visits: active behavior results in injuries.

YIKES! What has he done NOW?!?!

Zest for life would be a polite way of putting it…

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To read more about those early years, struggling to raise children, please read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

The Dance of the Snake Goddess Redux

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I apologize for repeating this post from 2011, but it is one of my favorites, and a memory that is brought to mind on those few occasions that i have to go to court for my children and I see this particular lawyer there…and I always giggle…

A very conservative lawyer friend had a very conservative lawyer wife who had taken up belly dancing.  She and 2 friends were so skilled in this talent that they were chosen to be performers for a large audience for First Night, the annual New Year’s Eve celebration in the city.  For an added “twist” to their act, my lawyer friend asked if his wife could borrow one of my son’s 5 foot long boa constrictors for their dance.  I had plenty of reservations, but I said okay. (It is always good to keep a lawyer friend happy because you never know when you will need a lawyer’s help.)  The ladies came to our house, and practiced with the snake while my son, Steven, who is very familiar with snakes, supervised.  The practice went very well, and the ladies excitedly decided to bill their act as the “The Dance of the Snake Goddesses.”

Well, New Year’s Eve came and I reminded Steven that we had to take the snake to the performance hall for the act.  Steven, who has Asperger’s and an anxiety disorder, was mortified!  There was no way HE was going to go to a large hall where there were a lot of people!  He handed me a pillowcase to put the snake in, and a bottle of alcohol “in case it bit someone”. He promptly took off on his bike peddling away to destinations unknown to me, (but far away from  First Night appearance.)  I started to panic!  These excited dancers were billed as the “The Dance of the Snake Goddesses” and they would have no snake!  Feeling extremely obligated to provide them with a snake, I decided to bring the it myself.  I had not minded the snakes when they were locked in the glass tanks, but somehow I was going to have to get up the nerve to actually take the snake out and put it in the pillowcase.  My hands were shaking as I undid the lock and took the cover off of the tank.   It looked docile enough, just lying there.  I reached in and managed to push it into the pillowcase using a long sleeved pot holder, proud of myself for not having to touch it.  Maybe I’d be okay! I tentatively carried the pillowcase to the living room, but I had miscalculated by not securing the top of it.  The snake’s head popped out, I pushed it back down.  It popped out again, and I pushed it down again.  This time it was stronger and its head came our farther.  When I tried to push it back in, it wiggle away from me and the whole snake came slithering out of the bag, which I promptly dropped.  There, on the floor of our living room, was a slithering 5 foot long snake!  I screamed.  My husband came to see what was going on, and he jumped up on the couch and screamed.  Even though I was shaking and my first instinct was to smash the thing over the head with a broom, I remembered  my commitment to our lawyer friends.  I gathered up my courage and, using the broom gently, I nudged it back into the pillowcase, this time immediately tying the top into a knot.

I was still shaking from this experience as I drove to the city with the wriggling pillowcase on the seat next to me.  I was feeling tremendous relief that I had at least caught it and was on my way to the performance. I even felt a little sorry for it, and turned the heat all the way up in my car so it could be warm.  (It had started to snow outside, which would mean there would be a larger than usual audience for an inside performance as the outside First Night performances would involved standing around in wet snow.  Great!  A bigger audience for what was sure to be a Snake Goddess fiasco!)

When we got near the theater, I put the pillowcase inside my coat to keep it warm. (MY I was brave!)  There was a line around the building waiting to see the performance.  I went to the head of the line, and quietly said to the guard at the door, “I have the snake for the performance.”  In his loudest voice, he parted the crowd by saying “Make way for the snake handler.  Make way for the snake handler!”  I wanted to hide!  As a middle aged, shaking, nervous, dowdy woman, I no more resembled a snake handler than a chipmunk would resemble Santa Clause.

I managed to get back stage with the snake and the belly dancers were very excited.  They carefully took him (her?  I couldn’t tell the difference,) out of the bag and began to practice.  By now I was shaking so badly that my stomach was in knots.  I was holding the bottle of alcohol (“in case it bit someone”.)  I was on the verge of tears, both from relief that I’d delivered the snake in one piece, but also fear that it would bite and there would be blood and screams and lawsuits.

The audience in the large theater was packed, standing room only.  The music for the dancers began.  They dramatically began the act hidden behind veils, with the snake on one woman with the head at one hand, draped across her back, and the tail on the other hand.  They did a dramatic dance, dropping the veils at different intervals for the audience to get a glimpse of the snake.  I could hear  “ooooh”  and “aaaaaah” from the audience.  I was hoping the snake wasn’t going to slither down and into the audience causing mass panic,  emptying the audience out into the street, or, worse yet, go around biting audience members with me following along with my bottle of alcohol. (Then I’d really need a lawyer for the lawsuits!)

Then something strange happened. The dancers dropped their veils, and the snake actually seemed to join in the dance.  Soon its head was wriggling in time to the music, its tail was swaying around, and it seemed to be having a grand old time!  It began to slither in time to the music (a pure coincidence I’m sure,) from one dancer to the next.  It was an amazing sight, the graceful gyrating dancers and the graceful gyrating snake, all moving in time to the music.  Mesmerizing. Amazing.  The act finished to a standing ovation, and darn it if it didn’t seem as though the snake bowed his head in response to the clapping from the audience.

After the show, the dancers gave the snake a few affectionate pats and back into the pillowcase it went.  I tied it in a knot, put it under my coat, and carried it back to the car.  I felt as though I was going to cry, but this time it was tears of relief.  I don’t know how I get myself into these situations, but, again, I’d come through it unscathed, with a little more respect for the reptile in the pillowcase next to me!

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To read more about our life as a family, please read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Another Year, Another Memory

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(cartoon reprinted from Readers Digest. Two angels are standing on Cloud 8 with the caption “Well yes, I’m happy. But I could be happier…) Don’t let this be you!

A new year has begun! Whoopee! I am so excited to see what great things the new year brings! I only have two annual New Year’s resolutions:
Resolution #1: I think back on last year, and am grateful for all of the wonderful little things that worked out well.

*Found out about Orange Leaf yogurt place where I could get healthy sugar free, non fat yogurt with my choice of toppings, m&ms, hot fudge (yum!), gummy bears, snickers and all the whipped cream I can fit!

*My daughter, Marie, has finally found a counselor trained in trauma and abuse who is fluent in American Sign Language. After all these years! FINALLY she is able to make some progress in this area. As her mom, I have been the only one she has confided in, and it will be nice to share that weight with a professional.

*I loved watching The Good Wife! And Storage Wars! And Survivor!

*I lost a pound and a half. Not quite my goal of 30 pounds, but at least it is in the right direction!

*I have two new grandchildren on the way with a whole lifetime to enjoy them. (Long live nana!)

*Another year accident free…where’s my check from Allstate?

*Another year major illness free! (The hubby had a bout with colon cancer a few years ago, but has been fine ever since surgery because it was caught early.)

*My daughter, Dinora, has a great new job, a fiance, and a cute little house.

*My son, Steven, (who has autism and ADHD,) has a wonderful new fiancee whose OCD keeps things structured and in place for him, stabilizing his disability. (There IS someone for everyone!)

*During several great movies, (The Butler, Gravity, and all of the Pixar films,) I ate plenty of buttered popcorn and jelly bellies. (Ahhhhh! May be the reason I didn’t loose more weight.)

*My son, Angel, who has Dissociative Identity Disorder, has miraculously made it through high school without seriously harming anyone. (Except for the refrigerator he overturned on a teacher…which turned out to be the teacher’s “fault”. In Angel’s IEP was the stipulation that he cannot be yelled at lest the “angry part”, over which he has no control or memory, comes out to protect him, a reflex reaction.) Life with Angel is quite interesting…

*Our cars, both over 8 years old and with more than 150,000 miles each, are still running and getting us places.

*My son, Francis, who, despite his blindness, is still making boatloads of money in the Silicon Valley computer industry. (On less child I have to support.)

*All in all, another successful year with more ups than downs.

Resolution #2: I look forward to the coming year with optimism and enjoyment. Hopefully it will be another successful year with more ups and downs, and I will make memories to put on my list for #1 next year!

Hopefully, your life will also have joy, happiness, love, and some interesting foods to eat!

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To read more about our life as a family, please read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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