Aug 012017
 

Some time ago, a relative buried his mother. Not long after, he and his brother and father went to the gravesite to see the newly delivered gravestone. They took pictures, and he showed me a photo of the headstone on his cell phone.

It was an ornately carved, big, beautiful piece of marble. But something was wrong, and I noticed it right away.

“Your last name is spelled wrong,” I commented.

He thought I was joking, and I had to tell him to LOOK at the picture.

He was shocked. “I can’t believe it! How did we miss that?!”

I understood how three people could miss something so obvious. And it was their own last name, for Pete’s sake. It was because emotional turmoil blinded them.

That’s why those of us working with people who have mental health problems need a team of people to shape how we view things. I don’t know how we could have seen our way all these years with Lilly, without the different team member’s input and insight, because of the continual emotional upheaval and exhaustion. These team members have been guardians, social workers, doctors, medication RN’s, and therapists. And sometimes, it’s a friend who visits Lilly and notices something I don’t, because I am too close to the situation.

My advice is to take advice, as long as it goes with your gut feeling of what is right. Don’t try to be all and do all. You will need help along this journey.

<3 Nealie

 

 

 

 

 

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Over the Edge

 Chasing Lilly, Life's Difficulties  Comments Off on Over the Edge
Apr 112017
 

When Bruce and I were at the Grand Canyon, I honestly enjoyed the clouds more than the mile-deep craters that a person could fall into. I had no interest getting close to the edge of anything remotely high.

Nealie Rose

Bruce kept telling me there was nothing to worry about, while I stayed seated on park benches as he got closer to nature.

Later, we were in a Grand Canyon  restaurant and gift store, and I saw a book for sale. Guess what it was called?

Over the Edge: Death in the Grand Canyon by Michael Ghiglieri Wow! I didn’t read it, but the title confirmed a few things for me.

That brings me to what I want to mention.

This month is National Child Abuse Prevention Month. And sometime average people under severe stress (and without needed supports) go over the edge and become abusive to their children.

Here are four scenarios that demonstrate how that can happen, and interventions. If you are interested in preventing child abuse, see what you can learn from these scenarios.

Love my readers, Nealie

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Oct 252016
 

If you are married and have a special needs child (or children), you know the unbelievable strain that parenting  puts on your marriage. You have extenuating circumstances that can destroy your relationship over time if you aren’t careful.

Child comes. Parents are ready and excited. The child has physical, behavioral, and/or emotional disabilities. Parents think they are prepared. The child’s care requires more than expected. For a longer period of time. The situation never seems to get better. The once-united front of the parents begins to crumble, because needs are not being met. One parent leaves the marriage -usually the father. What was a bad situation is now an impossible situation for the remaining parent, because, if two couldn’t do it, how can just one?

The politically correct way society often thinks (because they haven’t lived it), is that the parent who left is bad, and the one who remains must carry on regardless, for the sake of the child.

Carry on what was impossible before, with two people?

I must clarify a little here at this point, and say that I am talking about a child with more than a simple disability; one that is severely wounded, damaged, or physically incapacitated. If you lose the core family unit, then you lose. The child loses. Everything falls apart.

Taking care of the marriage must come before the child in this situation, because you can’t help that kiddo by yourself. Ouch. I know.

This is an explosive conversation, and most people won’t talk about it. Bruce and I put our relationship ahead of Lilly, and because we did, we were able to continue to be in her life, even to this day. Had we not taken care of our marriage, and if the stress and conflict involved in her care had torn us apart, then Lilly wouldn’t have us today as her parents.

I don’t know what might have happened to her.

-Nealie

 

 

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Jul 192016
 

Brown BearSeven-year-old Tommy had his sunglasses on while he sat  in the front seat holding his stuffed brown bear.

“Where are we going?”

“To the post office for stamps.”

“Can I take my bear in?”

“Well, they may have a “NO COUGARS” sign, but I’m not sure if there is a “NO BEARS” sign.

“What’s a cougar?”

“It’s a mountain lion. They have to watch out for those going in for stamps. But if one wore sunglasses, I bet they wouldn’t notice it.”

I glanced over as Tommy quietly removed his sunglasses and slid them over the bear’s eyes.

He was humoring me as much as I was him, and the sun shone a little brighter.

When you’re in a bad spot in life, it may be hard to see humor in everyday things. But we need to try, because those little smiles offer a reprieve from the hard stuff.

If your joy isn’t very large, it will grow when you enlarge the joy of another.

Love my readers,

Nealie

 

 

 

 

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May 222016
 
Cat in Seed Beads by Ari Kuzmik

Cat by Ari Kuzmik

We all know what we’re supposed to say when asked, “How ya doing?”

“Fine.” “Good.” “Okay.”

Are you lying? Are you really hurting or barely breathing because of stress? I have been there with Lilly, even recently, as well as a series of family crises. In past months I’ve said more than once, “Someone just shoot me!”

What makes the difference in surviving or navigating these craters (I’m not calling them bumps!) in the road is SUPPORT. You can’t do life alone when awful stuff happens. You have to have the support of others, and don’t be too proud to ask for it. I did a short blog about this in March of this year. It’s been a tough 2016! Reach out for help if you need it.

Nealie

 

 

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Apr 242016
 

For a long time every morning I would pass a sign that said, “Miss a Day, Miss a Deal.”

I hated that sign. I don’t even shop there. But that slogan … it made me slightly anxious, because it implied that I was missing something.

Stupid, I know. It goes in the same category as comments such as, “Why did you do that?” Why did I do what?

I remember being at my sister’s house when she was dying. She ordered me to pack her things in boxes, and to use packing tape to seal them. I haven’t been able to hear that rip of packing tape without sadness since that day.

Think of something that causes a little anxiety for you. If little things like these can get us going sometimes, imagine what might trigger a traumatized child.

The color of a room may bring back bad memories.

A certain noise may be a trigger. Maybe it preceded abuse.

Seasons, holidays, people with dark hair/light hair -who knows? We need to be sensitive to the things that may seem to be triggers, and not just chalk-up behavior to disobedience or defiance.

If there are problem behaviors that defy reasoning, then maybe something like this is at work. Pay attention to repeated reactions to certain people or things. Trauma kids often don’t even know why they get upset, so we need to help them by paying attention. Say a child has a memory of dropping their ice cream cone and getting beaten for the mess it made. It would be easy to assume that ice cream could be a trigger. Who would think that something that is good and fun to you, could be a negative for a child?

Keep a log of episodes and what went on those days. What season was it? Where were you? Any sounds in the background? Any different foods served?

A therapist with trauma training and knowledge can be valuable.

Listening to other trauma-parents can also be helpful.

Love my readers, Nealie

 

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Apr 122016
 

Lilly is in her twenties and wants to smoke. She’s told me that she has the right to smoke cigarettes, and she is correct.

The only thing that I could come up with (to deter her), was to say that I also have a right. I have a right to stop bringing sweets when I visit her, if she starts smoking cigarettes.

Today she asked me again about getting a hooka pipe. That was probably the 20th time she has asked. Picturing Lilly with a big hooka pipe makes me giggle. Can’t help it. I think that she means an electronic cigarette.

So, do my readers have any input here, other than getting religious on me? (I don’t think that smoking will keep you out of heaven, but you will get there faster if you smoke.) What about an electronic cigarette? What are the potential dangers to Lilly and those around her, and what are the costs?

Do you think that she should smoke an electronic cigarette? Do you think she should get a hooka pipe?

Can you think of other ways to talk her out of it?

Developmentally disabled people can and do drink, smoke, and become addicted to drugs and alcohol. I added a new resource that will help families of DD people navigate when this happens.

Love my readers, Nealie

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Help for Caregivers Who Can See No Way Out

 Chasing Lilly, General Information, Life's Difficulties, RAD parenting  Comments Off on Help for Caregivers Who Can See No Way Out
Mar 132016
 

I almost didn’t see the tiny insert in the newspaper, but my eyes immediately stopped on the heading, “Ohio Woman Kills Daughter, Self.” Something told me why, and as I read further, it was confirmed.

“Authorities say two people are dead in southwestern Ohio after a woman shot and killed her adult daughter and then killed herself… the bodies of the 54-year-old mother and her 24-year-old developmentally disabled daughter were found . . . Police said the mother left a note saying life was too difficult . . .” (The Canton Repository, 3/12/16, bold is mine.)

Of particular interest to me is the despair and hopelessness that results when a caregiver is overwhelmed. I have had that feeling more than once. It can happen with postpartum depression, raising a DD child, or with elder-care. It is vital that you share with someone how you are feeling!

My focus is naturally more on the despair brought about by being over-worked, overly-tired, and under-supported when caring for a developmentally disabled child, because of Lilly, and my work with her. (Chasing Lilly, on Amazon)

If you are in this situation,

  1. You have to tell someone how you are feeling! If they don’t take you seriously, tell someone else.
  2. If you have nobody to talk to, call  a crisis hotline. They are trained to offer advice and resource options. Call as often as you need. There’s nothing worse than finding out that something that could have helped you was in place, but you never knew it. Look that number up today and post it nearby.
  3. Start by contacting your county DD board. Contact your SSA worker. (SSA =Service & Support Administration) Go to the county web site and get names and numbers that might help. Make the calls.
  4. Contact your state Department of Developmental Services, (or similar title). This agency has a Deputy Director, and the websites will give contact information. You may qualify for help that you didn’t know was there. These people know how to help, if all else fails at the local level.
  5. Be frank. Don’t skirt the issues because you are embarrassed about your inability to cope. Many people suffer in silence, and then we read an news article like the one above.
  6. Leave a paper trail. Document your calls for help, any emails sent, etc. Use these when you are contacting people so they will see the seriousness of your situation, and the potential liability that might result should you send out call after call for help with no action resulting.
  7. Find a support group. Even if you cannot leave the house for now, find a support group and ask for phone contact with some members who are willing to reach out to you until something is in place where you can go to a meeting. (If you parent RAD kids, I highly recommend BETA: Beyond Trauma and Attachment, because they have a Facebook family that offers encouragement, as well as retreats.)
  8. Take care of yourself. Easier said than done, you say, and you are right. This can look like a shower, a salad, or a call to that crisis hotline. Do something to counter the downward spiral. Hang in there -Nealie <3

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Dec 032015
 

I find it amazing that Lilly , who has experienced atrocious abuse and hurt, generously gives people the benefit-of-the-doubt.

Yesterday, she and I were talking, and she expressed some annoyance toward the peer group that she is around everyday.

“I know Carl’s had it rough, and I shouldn’t get mad at him, and Mandy gets on my nerves, but she’s had a hard life. All these people have their problems. I try to stay cool, but it’s hard. (Pause) Hey . . .  I’ve had a hard life, too.”

Lilly said that like it had only just occurred to her. Isn’t it wonderful that she can see the needs and limitations of others, and express some patience and empathy?

Love that girl! -Nealie

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Nov 122015
 

I have had all kinds of teachers.

I had one who pulled my hair when she caught me talking.

I had another teacher who “didn’t tell” when I had an accident, and all the class wondered who had.

There was Miss S., who was so beautiful that I wanted to look just like her when I grew up.

There was the social studies teacher who loved his job and sparked my interest in what was going on in the world.

A math teacher who didn’t care if you didn’t “get it,” and lived only for the kids who did.

I had a teacher who frequently came to work intoxicated, but I wasn’t able to put two-and-two together until reflecting years later.

And then there was the teacher who freed me. She took our home economics class and turned it into an exciting time of creative exploration. She didn’t just teach us to cook -she taught us how to cook foreign foods and helped us put on a real luau -pig and all!

She went beyond in everything that she did.

She had us bring in old pieces of furniture, and we actually used toxic chemicals (oh my) to strip the finish off before sanding and refinishing. I was blown away by this new skill and sense of accomplishment in turning something tired into something vibrant.

Vibrant. That best described her. I watched in amazement as she sparred with administration for permission to do things in our class, and I know she sometimes went ahead without asking.

She dated a man who lived in Washington DC. She said he photographed presidents. We were a country school far from everywhere. How could she do that?

I could finally see beyond where I was, and because she was free, I could be, too.

Thank you, Ms. Bradley. I still love you.

-Nealie Rose

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