Posts tagged ‘autism’

The Original Tiny House



When our children were young, it was evident that we could not take Steven, with his autistic tendencies and severe sensory integration issues, on vacations to touristy hotels in unfamiliar areas. It only took us one trip to New Hampshire when he was a toddler to learn that his disability might be a hindrance for family fun and relaxation.

Never one to back down from a lifetime of vacations, hubby and I went up to NH a few weeks later to search for a home away from home in which Steven could be comfortable. We purchased a small cabin, one which would qualify to be a tiny house on Tiny House Hunters. It is cleverly designed, having 2 bedrooms. The “master” bedroom consists of a double bed inside 4 walls where one has to open the door outwards to crawl onto the bed. The second bedroom had 3 fashionable twin beds in bunked style, again accessed in the doorway. There is a tiny ladder to reach the 2nd and 3rd bunks. The tiny kitchen doesn’t matter because we usually grilled our food, and the tiny bathroom may have a bathtub in which I can’t sit up, but it is better than no bath at all.

This cabin has served our family well throughout the years with swimming, canoeing, fishing, frog catching, game playing and lots of family fun. It has never been as valuable as it has the past few years when hubby and I try to go up for monthly respite weekends. Life is so hectic and busy and often problematic having children with difficult issues that we literally count the days until we can once again relax in the woods; no cable tv, no wi fi, no telephone coverage, completely cut off from the outside world.

So it was that I relaxed this past weekend. Sitting on the deck, I sipped my tea and listened to the quietness. Every so often a bird would chirp, different birds, different chirps. I had never been interested in bird watching, but hearing the variety of peeps and tweets piqued my interest.

The snake that lived under the house was sunning itself on a nearby rock. Because Steven was a snake expert, I learned that it was not a dangerous snake, and would eat field mice that might otherwise invade our tiny house. I might prefer a cat, but a snake would do in a pinch.

The silence of the woods reminded me of meditation. My mind was calm and relaxed, free floating and super observant. The trees were all blanketed in dew, and thefat dewdrops hung from each leaf, defying gravity. I further noticed that on the end of each pine tree branch was new growth, poking out gently in a light green extension, a half inch or so long. Somehow I had never thought of trees growing, much less be able to witness it in action. The same flowers that we had planted at home without much success were growing like wild flowers at our retreat; large leaves everywhere, bright, vibrant flowers so tall and large that their stems were bent over with the weight.

It seemed like eternity, no thought of time or place, as I sat there and all my anxiety fell away and contentment filled its space. I was ready! I would “put my big girl panties on” and face the stress of the week ahead with courage, knowing that in another 29 days I could return to this place of peace.



If you would like to read more about our family adventures, please purchase my book The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane through Barnes and Noble or Amazon.

“If You Look for the Goodness in Your Children, Good Things Will Happen”

My dear friends and readers,

Please excuse this commercial interruption of your regular reading.

If you enjoy reading my blog, you will LOVE reading my book!

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen

(Review by Dawn Raffel from Readers Digest:)
Her story begins not with her children but with her own childhood spent traveling the country in the backseat of her parents’ car (her perpetually restless dad had post-traumatic stress disorder from WWII), often with very little money and few provisions. Where someone else might have seen deprivation and isolation, Petersen viewed her unusual childhood with a sense of wonder and gratitude. After marrying young and giving birth to a son who was legally blind (and who went on to earn a PhD on full scholarship), Petersen and her husband adopted four more special needs children and fostered many others. Each child has their own special story about overcoming tremendous physical and emotional difficulties in order to be able to succeed and enjoy life. Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read.

The link to the book:

Thanks sooooo much! Happy reading!

Dad and Daughter shared Ice Cream


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!



The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:

To Be Joyful with So Little


When Dinora and I visited her birth place, Guatemala, we spent some time with moms who were working picking coffee beans. They toil all day while their children play nearby. Prepared for this visit, Dinora had a backpack full of little toys; small dolls, Matchbox cars, bouncy balls, toy rings, and so forth. (Above is a picture of a little girl clutching a small ring in her hand, so pleased with her gift.) The children were amazingly polite. Each child would gather around Dinora as she gave them each a small toy. Taking it delightfully appreciative into their little hands, they smiled shyly and stepped back to leave room for others to come forward. They didn’t crowd her. They didn’t ask for more, more, more. They reveled in the joy of that tiny toy! Sheer happiness!

It made me realize that more and expensive and better isn’t the right Christmas concept for children as they may not fully appreciate their multitude of blessings. If only they could experience the happiness on Christmas that those children among the coffee bean trees exhibited. Pure joy! What a concept!

As Peaceful as Falling Snow


My husband and I have the tradition of going to our little cabin in NH at least once a month.  We have had a real challenge raising Marie and Steven lately, so this weekend was especially timely.  Right now I am sitting in a comfy chair, feet up, air warm around me, and a cup of hot chocolate with lots of marshmallows sitting on the table next to me, adding steam to the air.  I am smiling thinking of how this cabin has served us well over the years.

When Steven came to live with us, his obsessive compulsive disorder, extreme hyperactivity and severe sensory integration difficulties were not conducive to family vacations in hotels and such. My father, who adored Steven and saw many of my brother’s mental health traits in him, generously purchased this little vacation home.  He himself had always wanted a house in New Hampshire, and he was proud to be able to give me something that would last a lifetime.  The cabin is full of his carvings, including a sign that says “RELAX!!!”  It might be a reminder to actually relax, except on the sign is a carved eagle with a beak so sharp and long and eyes so wildly life like that it kind of scares me instead.  Fortunately, I have learned to look on this sign with love, a reminder of my dad and his “quirky ways”.

On the wall of the cabin are pictures of the kiddos through the years; Francis water skiing, Dinora standing gloriously in front of Mount Washington, Steven holding up his bucket y.of frogs, one frog in his hand thrust towards the camera looking huge next to his tiny body, Andy wildly waving a sparkler on the Fourth of July and Marie holding up a huge fish she caught ice fishing, almost too heavy for her to hold.  There are other pictures of all of us together, or the kiddos playing in the sand at the beach, cuddling on the deck of the cabin, or hiking in the woods.  The pictures are a nice reminder that we have been parents for a long time, and our children have led full and happy lives with us.

While staying in the cabin is reminiscent, it also serves as a retreat for me and my husband.  It is very quiet here.  No telephone reception. No multitude of cable tv channels.  No internet.  No neighbors. No housework.   No stress.

The weekend is a wonderful interlude to our busy lives, an interlude where we are free to nap all day, laugh at silly things, eat  wonderful concoctions Raymond dreams up, (last night it was shrimp rolled in bacon and topped with cheese,) and spend lots of time loving each other.  While we are loving when at home, we go into overdrive in the secluded cabin. No neighbors can hear our screeching laughs.   No children can walk in on our sexual escapades, and no one cares if I walk around bra-less. We are “free and easy”, and the stress just melts away…

Today, the day we will be packing up to go home, I am sitting here writing this, content watching the snow slowly falling outside; soft, fluffy, amazingly beautiful snow!  Peace surrounds me now.  I am well rested and have laughed and loved my stress away, and I am ready to go home to face whatever challenges may come my way.  Bring it on!

All It Took was a Few Daisies

Things have not been going so well lately. Marie has been in the hospital for trying to swallow a box of staples during a PTSD episode. (The pain of the memories was just too much.) The staples, thankfully, passed through and did no damage, but her recovery from the incident has not passed so easily. She is sad and shaky as she works through her most recent memory, that of a “john” pulling a gun on her mother. She remembers hiding under the bed and watching in terror as his footsteps thumped by, sure he would find her and kill her at any minute.

Steven has had a similar fate. As a young adult, he chose not to take his medication anymore. He didn’t like it because it made him feel “sleepy”…instead he is hyper, agitated, argumentative, obsessed and out of control. When you have a mental illness when you are a child, you are hospitalized and given great care. When the same thing happens when you are an adult, you are arrested for domestic violence and thrown in jail. Not the best situation, and extremely difficult for a parent to handle. (Yes, I am being selfish thinking of how this affects me.) Maybe when he is released he will agree to take his medication again, medication which has enabled him to live a full and relatively happy life. Medication which has calmed his OCD and aggression. Medication which has smoothed out the wrinkles in his brain created by in utero exposure to cocaine, heroine and alcohol. Medication which has made our family life “normal”.

Yesterday, (Thanksgiving) was a solemn day for our family, missing two of our beloved children. In preparation for the day, I had cleaned the house as my husband had shopped and prepared the food. I had hoped to get to the store for a floral centerpiece to add some happiness to our table, but time just didn’t allow. Setting the table, I felt sad, abandoned, and empty inside, unfamiliar feelings for me. Just as I was allowing the despair to set in, there was a knock at my front door. There stood a middle aged woman dressed in a neat, black coat. I didn’t recognize her at first, but as soon as she introduced herself, I remembered that she had a child in the same class as Steven ten years ago. I forced a smile and asked her how she was. She had been thinking of me, she said. She remembered me from all those years ago and she remembered the challenges our children faced. She had made me a beautiful floral centerpiece for our Thanksgiving table! She said she knows how hard it is for her to raise one child with mental illness, and that she has admiration for me raising several. I thanked her and held back tears as I hugged her tight.

This amazing centerpiece is filled with bright orange mums, cheery yellow daisies, and red roses, whimsically arranged with a big Thanksgiving Day bow. Looking at it, I can’t help but smile. It is beautiful! It is hopeful! It is joyful! It was just what I needed to get me out of my despair and realize that this, too, shall pass. And the reminder came from a woman who was almost a stranger to me. I am so thankful for the timing of her thoughts of me.

“God Don’t Make Junk”


This used to be my mom’s favorite saying. She believed it all of her life, but never as much as she did after the birth of my brother, Curtis. When she was pregnant with him, she was unknowingly exposed to German Measles, thus affecting him with Rubella Syndrome.

Curtis was unfortunate to acquire all of the accompanying diagnosis; he had a severe hearing impairment, congenital heart disease, an intellectual disability, an odd head shape (like a smooshed pear,) a cleft lip and palate, autism and was legally blind with crossed eyes that wiggled back and forth. (Additionally, when he was a teen, he developed schizophrenia, but that’s for another story…)

Because I was only 4 when he was born, I thought he was the cutest thing in the world! He was my BROTHER, after all. I delighted in feeding him formula through an eye dropper, trying to quell his kitten like hunger cries. I loved to rock him in the rocking chair, all bundled up and warm. He was a delight to me!

Curtis’s life in our family was as amazing as mine. Loving, adventurous, interesting, and accepting. Anywhere we went, I would explain to quizzical stares that he was born like that and he might look different, but inside he was the same as everyone else. In fact, he had an amazing sense of humor and would laugh at anything! He loved to eat peaches and watch Sesame Street. As I extoled my brother’s virtues, I could see their stares soften with understanding and acceptance.

The “gawking” role was reversed when I was a parent, and this moment is etched into my mind. Francis and I were at the zoo. He must have been about four years old because I remember pushing his sister, Dinora, in a stroller. Nearing a pen of vastly ugly pigs snorting mud, Francis exclaimed, “Look, mom! One of the animals got out of the cage.” I looked over and saw a horrified mother with a toddler in a stroller. A disfigured toddler, with a gaping mouth like Curtis used to have. And the child was snorting bubbles and drool. Taken aback and horrified by what Francis said, I took his hand and we walked over to the stroller. I smiled at the mom and told her what beautiful eyes her child had! I asked her if it would be okay if we touched him, and Francis and I leaned over and gently rubbed the child’s chubby little hands, which opened and closed in excitement. “He really seems to be enjoying the zoo!” I said, as we parted, smiling knowing little smiles at each other.

I then took Francis aside and explained that God makes all types of children, and “God don’t make junk!” His observational comment was an innocent one, (especially because he is legally blind,) but it provided an opportunity for a valuable lesson.

Every mother wants to be proud of her child, and to have others share in her positive feelings. Every child is a joy! Imagine yourself in the mother of a disabled child’s shoes. Have empathy for that mom. Join in her admiration of her child, and maybe you will also internalize the concept that “God don’t make junk!”


For more stories about Curtis’ childhood and our adventurous family, please, read my book. Here is a link:

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

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