Oct 052017
 

Bruce wore tiger-striped reading glasses today. Some I picked up from the dollar store. He has no fashion sense and doesn’t care, so it’s amusing when he is accidentally in style.

He needed a bandage because he just had something on his face treated by the dermatologist. So I heard him yell, “Don’t tell me this is all we have for bandaids?”

I responded, “What? You don’t like bright purple ones? Lime green? How about the ones with hearts? Oh, and we have some with Minions on them!”

Tiger stripes framed the resignation in his eyes. He must have sensed what was not fashionable right then. Imagine that. 🙂

Bruce has always had my back. I wouldn’t have been able to do what I did with Lilly without him. Working with a traumatized child is an uphill climb, and you have to have some help along the way. Maybe the “Bruce” in your life is a close friend, a brother, or a group of parents supporting each other. Don’t try to go for any length of time by yourself.

Where can you find some support? Try your local foster agency, either county or private. They will know about support groups. Ask around if you belong to a church. Here are organizations that are helpful:

BEYOND Trauma and Attachment (BETA)  A Facebook open support group . They offer humor, information, and retreats.

Attachment & Trauma Network (ATN)   Great international resource with a crisis hotline: 888-656-9806.

The National Institute for Trauma and Loss in Children is on Face Book. TLC 

Institute for Attachment and Child Development IACD

See my RESOURCE tab on the home page for more help. <3 Nealie

*(Minions is a trademark of Universal City Studios LLC)

 

Oh Boy!

 General Humor, RAD parenting, Uncategorized  Comments Off on Oh Boy!
Feb 012017
 

Do any of you take your special child to public places with caution, and hold your breath until you get home? I’m laughing, because it still happens, and Lilly is in her twenties. Lilly is hyper-sensitive to strangers around her, and will often react to their appearance, clothing, voice, or demeanor. We never know what to expect!

Bruce and I were at a Wendy’s restaurant with Lilly, standing off to the side waiting for our order to be filled by a sweet black woman, who was running things behind the counter single-handed with a smile. But the smile instantly vanished when a chubby white man came came up to the counter and held out a soft-drink cup.

“I need a refill of Hi C.”

“We’re all out,” she snapped.

I held my breath, and hoped that Lilly’s interest hadn’t been piqued by the terse exchange. Lilly was looking at them, waiting for what would come next.

And then the man said, “DON’T toy with my emotions.”

The woman laughed and held out her hand. “Give me your cup.”

He handed it to her, and she filled it with Hi C!

Wow. Who would have guessed that they were friends, just messing with each other? We need to save our quick judgements, don’t we? It was nice to witness some fun, even if it was suspenseful.

And remember, don’t toy with my emotions, lol!

-Nealie  😛

 

 

 

Jan 292017
 

Taking Care of Children by Ari Kuzmik

Remember the swimming pool mental picture from Chasing Lilly?

Picture an empty swimming pool in your mind. It represents a damaged child’s life. Then someone dumps a bucket of dirt into the pool. That dirt is the abuse and trauma experienced by the child.

Your job as a healer is to dilute the dirt by adding bucket after bucket of (healing) “water” by loving and connecting with that child.

The trauma (dirt) is still there, and always will be in that pool, but the healing water of goodness, love, and acceptance will dilute the the bad things, and that child will be empowered to have a better life.

The healing will take much longer than the period of abuse did. Sometimes it takes forever.

Forever is a long time, but if I have done anything in my life, let it be that I have helped an injured child heal.

But not at the cost of damaging and traumatizing other children. That’s the catch.

You must protect other children from being harmed, and don’t assume that kids are resilient and everything will be okay, just like you don’t assume that your pets will be fine without added protection.

-Nealie

P.S. Don’t you just love Ari Kuzmik’s art? 🙂

 

 

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

 

 

Oct 042016
 

I ran into someone that I hadn’t seen in about fifteen years today. Long story short, she is really going through it with a child they adopted.

The girl is 14 or 15 now, and went back and forth between the birth mother and foster care from a young age. After a neglectful and turbulent early childhood, she was adopted by this friend, whose family had been respite providers during those years.

Good foster families play such an important part in anchoring and providing stability for children that have no stability in their lives. And usually there is no thank-you from the child, who may be unable to appreciate the safe haven that has been provided.

Helping a kid who doesn’t seem to want help, (and is often defiant and destructive to the family unit), is a hard burden to bear. I felt for my friend, because we have been there with Lilly. I feel like we’ve been to hell and back with Lilly.

Has it been worth it? Absolutely! What advice do I have for people in this situation? Here is a mini-list of tips:

1. Take care of your marriage. (I will talk more about this topic in two weeks, so stay tuned.)

2. Take care of your health. Eat nutrient rich foods and be active physically.

3. Have a list of people on your team, and their numbers. An actual list. After you put down the professionals, rack your brain to  add helpful people who are not professionals. When in crisis, if you don’t have a list, you may not be able to focus on who to call for help.

4. Know the signals that will tell you that your child is becoming dis-regulated or agitated. With Lilly, she would pace, suck her thumb, and hunch her shoulders. When these happened, I knew we were headed for trouble if there wasn’t an intervention.

5. Think about interventions. Make a list of things that could be used as interventions. More about this in weeks to follow.

6. Don’t hesitate to call for help! It’s when you try to do it all alone that either you get harmed, or something really bad may happen.

7. Document everything unusual and date it. Add names of anyone who heard or saw what you are documenting. I’m talking about unusual or bizarre behavior, harm to animals, self, or others; accusations, fire-starting, running off, breaking items, stealing, etc.

With the holidays coming, it is wise to be proactive if you don’t already have these things in place. Nothing is fool-proof, but you will fail if you don’t think about this seriously.

Love my readers, Nealie

 

 

 

 

 

 

Sep 122016
 

Are You a PuristA Purist has strict or precise rules that do not vary, regardless of the situation.

I know God says that we aren’t supposed to lie, but  have to believe that He was okay with it when Corrie Ten Boom’s family hid the Jews from the Gestapo, and lied to do it.

A purist would have turned them over to the Gestapo, because it’s wrong to tell a lie.

What am I getting at? Someone had a special-needs child, and his fish died. It was a fish that could NOT have been identified by the child in a police line-up.

The purist insisted that the child be told the fish died, even though there was a high possibility of a melt-down and self-harming after the child was told the fish was deceased.

Someone else felt that it was fine to replace the fish and not say anything. Replace it as many times as needed, and make that the longest-living fish in the history of the world. Why? Because there have been too many crazy incidents in this child’s life, and he isn’t stable.

Personally, I don’t believe that one-size-fits-all when it comes to damaged children, and I’d vote for the fish that lives forever.

Comments either way are welcome. 🙂 Nealie

This post contains an affiliate link.

 

 

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

 

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

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
Jan 202016
 

cat smelling flowerIt’s imperative to take care of yourself when you have special needs kids, multiple small children, a member of your family with long-term, chronic illness, or similar demands that suck you dry.

Make time for yourself, (even a few minutes), when you have any of those situations, or when you have any crisis that lasts for more than a week.

I think that a week is about all a person can handle without beginning to do some type of mind and body refreshing, or self care. It could keep you from running down the middle of the street, screaming at the top of your lungs.

What does self-care look like? It’s not usually just one thing, but a series of small things that will help you feel a little better, and it is different for all of us. It is something that gets your head out of the situation -at least for a few minutes.

I like to put cream on my feet, and if a week has gone by without that, then I have been under too many demands. I like to connect with a best friend for a visit or long conversation -uninterrupted! A meal in a restaurant, a short walk. A babysitter for the kids! A soak in the tub, a manicure or haircut. Sometimes, it is fifteen minutes near a sunny window with my eyes closed. (It’s winter here, or a lawn chair would do just fine.)

What little things refresh you? Make a list, and be reasonable. (No trips to Hawaii.) Try to do one thing every day. When we had Lilly, we had years of one crisis after another. Hey, I lived through it with her, and now there are new ones with other family. Does anyone have a life without troubles? No.

And take time to pray and connect with the Creator. He created you, and is able to refresh you.

Wishing you the best, Nealie