Posts tagged ‘anxiety’

As Peaceful as Falling Snow

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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

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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.

Literally, God Will Provide…

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In my years on earth, miracles have happened that have strengthened my belief in God. Whether it be my daughter, Dinora, gaining hearing after being deaf, or the provision of a wildly disputed passport showing up in our mailbox just in time for her travel to her birth country when she was a teen, I have been blessed. But I’ve never been more surprised about God’s ability to provide until today…

We have to share our cars now that Angel is driving, and today was my turn to take the big family van. Being short on money this week, I fished out a one dollar bill that still clung to life in the bottom of my purse. Victory! When stopping for gas, I could go into the convenience store to get a bi-i-i-i-i-ig drink of Diet Coke to last me the day! Once in the store, I put my la-a-a-a-a-a-a-arge cup under the spigot and filled it to the brim, excited at the prospect of getting such a delight for only 89 cents! Looking up, I suddenly noticed that this was not an all sizes pay same price kind of store, and that a large soda was $1.49! My heart skipped a little bit when I realized I was going to have to go out to the van to dig up some loose change in the carpeting or under the seats to pay for the soda. Just as I was putting the lid on the cup, the store owner struck up a conversation. “That’s a big van for you to drive,” he said. “I have five kiddos and our family all has to fit,” I answered. “Yeh,” he said, “But it must be really difficult to drive that thing.” I just laughed and shrugged. I was just about to tell him that I was going to have to leave my drink on the counter to run out to get more money (hoping to dig up another 3 quarters,) when he said suddenly, unaware of my financial situation, “God bless you! The drink is on me.” I smiled and said an enthusiastic “Thank you!” He could not have understood how much this gesture was seen as a blessing, (especially because when I got back to the car I could only find six pennies, two dimes and a nickel.) God provided a Diet Coke so large that I had enough to drink all day, and I still had a dollar left in my pocket! Maybe no big deal in the scheme of things, but, to me, it was a personal affirmation that God DOES provide!

Similarly, another provision surprised me today. Having recently saved up enough to buy a flat screen television to put on the wall, we have been remodeling our living room. I washed and hemmed some new curtains and shampooed the rug. Without the large, old television cabinet, the room looked much cleaner and brighter EXCEPT for our 25 year old couch that displeasingly hugged the wall, looking like an old walrus, slumpy and bedraggled. (The couch was so old that I could not count the number of stains, or the times the skirt had been super glued back on because one child or another had ripped it off in a PTSD or dissociative fit.) I would buy a few throw pillows to brighten it up, I thought to myself, just as my phone rang. It was a neighbor, one I always wave to but don’t talk to too often. They were getting new furniture, she said, did I want their leather, L shaped couch? It was still in good shape, she explained, and they paid $6,000 for it, but they were looking to redecorate. DID I WANT IT???? DOES POPCORN POP? DO FERRIS WHEELS TURN? Yes, yes YES! Of course I wanted it! What an unexpected surprise! How wonderful is God, who provides even when we don’t ask! That is truly a Being that sees inside our hearts.

A Whole New Meaning to “Swimming with the Fishes”

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I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

 

If you are interested in reading more, I have written an e-book entitled The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane  available at I-Books, Amazon, and Barnes and Noble.

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

What’s In My Purse?

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As the mother of children, especially children with disabilities, I have been a frequent visitor to emergency rooms. It didn’t take me long to realize that those hours spent W A I T I N G were tedious for my kiddo and myself. In fact, for my kiddos with ADHD, they could be dangerous. With Steven, he would open all of the drawers and fling the contents onto the ground, swing from the air hoses and climb on top of the curtain. He was generally uncontrollable in an environment that he saw as a playground and I saw full of dangers that would land him in an emergency room for a reason other than for that which we had come! I had a knot in my stomach and tears of frustration. The emergency room staff and I finally learned that the only examining room suitable for Steven was one for psychiatric patients…no drawers, no air hoses, no curtains to climb. That solved the problem somewhat…but the long wait was also a major issue. Visits to the emergency room often ran six, seven hours, and sometimes all night! What to do? What to do? What to do?

Alas, out of need emerged my “emergency room purse”:
*Extra copies of medical cards and social security cards; when under duress with a screaming child coming in with the ambulance, rummaging through my wallet for these items always seems problematic and adds to my stress.

* A written medical history for each child; remembering those pesky spelled medication names and listing hospitalizations and diagnosis are always nerve wracking, having them at your fingertips is priceless.

*Quarters and crisp dollar bills for the vending machines.

*Animal and peanut butter crackers along with some juice boxes so I don’t have to spend so MUCH at the vending machines. (Dispensation of food and drink dependent upon reason for visit to emergency room)

*Cell phone charger (hours waiting…games to play…people to call…need I say more?)

*A deck of playing cards, INVALUABLE for killing time, and also for great mother/child bonding.

*Manipulative toys
for kiddos with ADHD…nothing like having that coil to twirl or that Rubik’s Cube to solve.

*Extra diaper/underwear and pants unless the child prefers to go home in a hospital johnny. (My daughter, Marie, actually loves the hospital clothing and has a whole drawer full…starting from small sizes when she was young up to the adult sizes she wears now.)

*Chap stick; the rest of me may look like Frankenstein’s monster, but my lips will be smooth and pretty.

*A large print, best selling book for me to read; when a kiddo is sleeping, (YAY!) the lighting may be dim and my eyes may be teary, but large print has always served me well.

My life has been spent trying to remain sane while raising children who can be difficult. Emergency room visits are always stressful and my mitigating solution is the “going to the hospital” purse.

Not to be confused with my “going to the movies” purse…

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