Thunderstorms

Photo courtesy of thelensflare.com

I know that most people have experienced difficulty with thunderstorms at some point in their life. I have, and well, I have mentioned before that Ruth still does. Ruth has had a couple of busy, fun filled days, and took a nap yesterday afternoon. The result: she was up at 10 PM when the thunderstorm started, and I was ready to head to bed. When I say up, I mean playing in her room after being put to bed. I wasn't as sweet as I could have been when she came into the living room to say she was 'scared'. I sent her back to her room, and told her she would be fine. Of course, I really didn't realize there was a thunderstorm going on, as the curtains were drawn, and the TV blaring.

5 minutes later, I went to crawl into my bed, and in popped Ruth. I was still feeling grouchy, but had noticed the lightening through my bedroom window. "Mommy, I just want to talk for a little bit. Is that OK?", Of course it was. I was comfy in bed, and she laid across the foot chatting about how she thinks of our dog, Sam, as a therapy dog, and how she wishes he would sleep in her room. Of course, he sleeps in my room. She has her cat and typically there are 2 guinea pigs. (Right now, there are 4- she is pet sitting for a friend.)

Before long, I told her that I was going to turn off the light. I wanted to see the lightening, and help her to adjust to it in a safe environment. She crawled up to the pillows, and snuggled with my hair rubbing on her nose. We talked about what makes her afraid of storms, and she really was not able to label the cause. Then, she spoke some of the sweetest words, "You know what, Mommy? I feel safe here cuddled next to you and being held close in your arms."



Teachable a moment! (as well as precious memory....)



I asked her to describe how she feels, and to try to paint a picture in her mind of this moment. The lightening and thunder outside, the safe, warm feeling inside. "That way," I suggested. "You will have something to help you when you are somewhere I am not. You can just remember this moment, like I will."



You see, in our home, we deal with SPD a lot. But, almost as often, it is the anxiety that gets the best of us. So, I hope that I was able to build a small, but firm, foundation for another storm. You know like the old children's song....

The wise man builds his house upon the rock.

The wise man builds his house upon the rock.

The wise man builds his house upon the rock.,

and the rains came tumbling down.

The rains came down and floods came up.

The rains came down and floods came up.

The rains came down and floods came up.

But, the house on the rock stood firm.

Maybe, just maybe, Ruth will find her storms in life are bearable, because she has an inner strength no one can take away. Her faith, and well, her family's love.

Hairy Details

When you have a child with Sensory Processing Disorder, one of the issues tends to be brushing/ combing their hair. With Ruth, this is a huge difficulty. She can do the front, but the back is hard to manipulate. I struggle to get her to let me help. The tears flow, and it breaks my heart. But I do not want her to go out with a huge mess of snarls. She has enough to contend with...

We have tried the short pixie cut, but then she didn't have the length she needed for stroking the hair across her nose in an effort to calm herself. That is when we had our last bout of hair pulling, silver dollar sized bald spot. Not pretty, and very concerning. Thankfully, we acted on it, and well, that is what got us our diagnosis: Trichotillomania, General Anxiety Disorder, and finally- SPD. Each step has been long and tiring, but that is a different post.

Back to hair----

After the pixie cut, Ruth was asked to be a flower girl for her cousin's wedding. Ruth wanted to have her hair done, and so we grew it out. Oh, how sweet it looked the day of the wedding. :) That was last year, and though we have had a few days of sweet hair styles, Ruth cries when we try to brush it. We have tried every kind of brush/ comb imaginable. It just is hard to deal with. Who wants their child's day to start with tears, or have their self esteem take a nose dive as you point out where they missed brushing day after day. I know I don't...

The other day we were at the library with our pal, Meg. Meg wears her hair pretty short, and in a wedge.

Hmmm......

I just saw that look on a woman at a party last week.

Hmmm.....

Selena Gomez, one of Ruth's favorite actors, just cut her long hair into a longer wedge.

Hmmm....

Look who got their hair cut into a wedge!

Isn't it sweet? Long hair for nose rubbing, short hair in back without a rat's nest. We think she looks a bit like one of her favorite characters, who lives her life to the fullest: Ramona. She got this morning, and her hair was cute. Brushed with ease and no tears....

Yes, this haircut makes both mother and daughter, happy!

Baking Up a New Outlook

Ruth has a friend, "L". At first, we were not sure about "L" from the parent stand point. Ruth often left her house in tears, and when "L" was here there was quite a bit of fighting. Finally, I told "L" that we don't like fighting at our house, and if she wants to go home, it is okay. I will be glad to take her. Amazingly, the fighting stopped.

"L" has her own set of difficulties. I do not feel at liberty to discuss them, except for one which is pertinent to this post. She is the youngest of 5 sisters. Now, I am the youngest of 4, and my Nana was the youngest of 5. I have often been spoiled by my sisters, not teased to tears. I do not recall them harassing my friends. In fact, the opposite. But, "L" has a different family life style. Her sisters fight, often.

Yesterday, Ruth asked to visit "L" for the afternoon. Ruth was excited and really wanted to go. I let her. It turns out that the older sisters were in charge. They locked Ruth out of rooms, and out of the house. They teased her often, and made up mean songs. When their mother came home, Ruth didn't tell her about all of this, because in the past the sisters have lied about the behavior. Mom offered for Ruth to have dinner, thinking the girls had done the prep work she asked. Apparently they were too busy being nasty to remember, and so dinner wasn't going to be until after 8. Ruth was told it was going to be too late for her to stay for the birthday cake. Ruth called home in tears. I went immediately to pick her up. After she came out to greet me, we tried to go in to get her things. The door was locked. Ruth began to cry again. I ushered her toward the car. As I was getting in "L" and Mom appeared with Ruth's things. They commented on how Ruth left without asking for help in finding them. I explained about the door. Mom said she was int he shower. I believe her. She is a very nice woman, who maybe doesn't know about what is truly going in on. She has a lot on her plate, and I didn't feel it was time to add on. SO, we thanked her for the visit, and left.

On the way home, Ruth asked if we could bake a cake. She bought a mix about a month ago and was told when she was ready, she could make it on her own. She expressed such delight in making this cake. She ripped open the box. Used my good Fiskers pinking shears to cut the plastic bag. UGH! Cracking eggs, there were squeals of delight. Our eggs have the occasional double yolk. She stirred up the mix, measuring liquid in the right kind of measuring cups. :) The chuckles abounded from Grandpa and I as she licked the side of the bowl after pouring it into the pan, and then proceeded to lick the spatula that we needed to scape the remains. Whatever....

Ruth sat and gazed at her "un- birthday" cake as it baked.

She talked about the way it would taste, and the frosting she would place on it. She licked the stove- yes, I know- and decided it didn't tasted the way she thought it would. Good, if it had tasted good, I would be in trouble. She'd be licking every one's stove.... Off topic. We invited Grandpa to come and have cake for breakfast, as he needed to leave while it was still baking.

When the cake cooled, we applied the frosting from a can, and Ruth lathered on the sprinkles. She had a small piece, complete with lights off and candles. The delight on her face showed me that she had a new outlook. The tears were gone. The pleasure of her own creation bloomed.

Ah, if only we could find a way to bottle this to send along with her to school. :)

PS: We have a new house rule. "L" may come here to play as often as she wants. Ruth is no longer allowed to play over there. It is a sad thing, but I think it is for the best.

The strength within

Today was pretty warm, some would say hot. I have been doing school work most of the day while sitting in front of the air conditioner. I have no choice, the work has to be done.

Ruth asked early this morning, before my eyes were even open, if she could invite a friend over. I told her she could, after all her relationship skills have grown to the point where if I have school work, she can play with a pal with out an eagle eye watching. :)

Ah, good intentions... No friend though. No one was answering their phone. Frustrated tears sprang from her eyes. After all, she had dressed up with her new 'funky' outfit, and lip gloss.

Maybe we could go out shopping?

• No, sweetie, I have school work.

How about the pet store, I would love to pet puppies.

• No, darling, I have to do this, it is due.

But, I am bored and tired of TV.

• Thank goodness, but I am sorry. Daddy is busy doing yard work, why not go with him?

No, thank you. I really wanna' go somewhere to pet a puppy or swim or something.

• I have to finish this. You know it is important.

Okay. I will go play for awhile. Can I paint a box for Erin's present? .....

I finally had enough of the school work making my eyes go wacky. I suggested Ruth get her swimsuit on, and we drove down the road to the small beach. She brought her bucket for fresh water mussel shells. I brought, well, my book that I was using for my project, and a highlighter to highlight the passages I needed.

Ruth got wet, and entertained me with dumping water over her head. It was cute. She dug a river and played, all the while eying the raft out about 100 feet from shore.

I wanna swim to the raft.

• Go ahead if you want.

I am afraid to.

• You have swam out there before.

But, I had people in the water with me. (We were the only ones at the beach.)

• Honey, it sounds like you are letting your anxiety win.

But, Mommy, I want to go out there, but I am afraid.

• I understand you are. I cannot go with you, I do not have my swimsuit. It seems like you have two choices, Darling. You can allow your fear to stop you or you can choose to move past it. I can not do this for you, you must decide.

A few minutes go by. More dirt is played with. More passages highlighted. A splash is heard.

Strength within my girl propelled her the distance to the raft. There she sunned for awhile before coming back to shore. I pulled up my shorts and met her about half way. Now, I can sit and do some more school work, and she is content for the evening.

I made a few changes, with Ruth's help.

I thought, if the blog is about her, it should be one that somewhat reflects her.

So, here it is.

The hot pink, cheetah look.

I hope you enjoy it. :)



PS:
Don't forget to check out Hopeful Parents on the sidebar. It is fantastic....

Explaining things

One of the hardest things for me is having to explain Ruth to people. The worst ones to get through to? Family members, lately her brother, Brian.
Tonight, Ruth had several meltdowns over 'special' things: her swing, a seat near the fire. It is so hard to get her to share. The meltdowns are tremendous, and can happen without a glimpse of them coming. Thankfully, as a family, we are working to keep her to 'normal' standards for her age. Occasionally, we might help another person to understand why a certain spot is important to Ruth. I find it helps when she is having difficulty with a friend who is visiting. But, when it comes to 'the girls', Ruth's nieces, I feel that they seem to always have to be the ones to give up, as does Darrell. Tonight, we dealt with the meltdowns, and stood our ground for our granddaughters. In the long run, we believe it helps Ruth as well. I did apologize to Bobby and Chrissy (my stepson and daughter-in-law) about the behaviors. They told me not to worry about it. After all, I had dealt with Brian just an hour before.
You see, Brian was diagnosed with Dyspraxia as a young child. I had no support from a doctor or the school. it was difficult, and his will was very strong. It still is. As a result, Brian had difficulty with anything physical. I let things go, and "helped" him by giving him excuses not to do the things he was told to. "It is too hard" or "My body hurts" were allowed excuses to get out of most situations.
Brian watches me with Ruth, and know that I regret letting things go for him. He attempts to hold me accountable to making her tow the line. Now, this is hard, because he does not understand that his expectations are based on his own age, not hers. He thinks I am full of it. I have spent time trying to explain things to him, and well, he seems to want to understand, but he thinks she is playing me.
I wish I had an answer on how to explain things to others. SPD is not a diagnosis that is easy to comprehend. There are no tests that are conclusive to say it is this chemical or that neuron. The anxiety is just as tough to understand. As he says, often, "We all have sensory and anxiety, Mom." He just doesn't get that Ruth struggles with both at a level that is interfering with day to day life. UGH!
Oh, well, I will plug along. He may
get it' or not. The bottom line, I know he loves her and wants the best for her. I will just keep monitoring things, and pray that I can get through the rest of the summer.

Support Systems

As a parents of a child, whether with 'special needs' or not, it is good to have a support system. Living so far from family, my system is at times smaller than I would like. But.i think that is where the internet comes into play.

Before I go on, you should know, I do have some friends that understand Ruth, and I just have to say, it is wonderful, just wonderful. My friend, Meg, for instance, will always find a way to help me to relax and see Ruth's unique talent for being open to saying what is on her mind. Meg is the one that bought a the cat rock the other day. She has a son that has dealt with anxiety as well, and Meg just always seems to be able to go with the flow. I know she has moments, and that is what helps. I met Meg when I was working in the worst job I have ever had. Each day, I think she came in just to help me to get through the day with one smiling face. It was horrible. Meg pointed me in the direction of my current work locale, and I can not thank her enough.

In any case, I think I had a point.

Oh, yah, support systems.

I have been reading some blogs for almost as long as I have known about blogging. These ladies just have no idea how much their lives have touched mine. For instance, Michelle offered to buy one of Ruth's Rocks. We prayed for her daughter Riley as they were raising funds for a service dog. I wish it could have been more, but I know that it was what we could do, so we did. Then, Michelle wrote about a new place for parents to gather. It is called Hopeful Parents, and you know it has been great to visit there. If you happen onto my blog, please, go check it out. You will not be sorry to have them as a part of your support system. The things that are talked about range from food issues to Autism to Sleep apnea, and the list goes on.

Little things to those on the outside, your know "behavior issues" ... the parents know just how hard it is to seperate an 8 year old's attitude from her sensory issies or anxiety. Find a support, whether from your mother who reads as many books as you do {Thank you, Mom} to the local pal who helps you laugh to the person you may never meet in person that helps with achieving a goal in whatever manner they can, you will not regret it.

Finding Her Way

Ruth loved camp. It was the best time, and I am so thankful. I found it was truly good for me as well. RESPITE is the word I heard as I described the way I felt. It was three days of not worrying about what was going to happen next. I sat and read books, enjoyed some down time. What a blessing. :)
Now, today, we went to the library for the rock painting activity. She needed me to stay close by. I should have realized that would be the way when she came out of her room dressed in her yoga pants with a flannel shirt covering a tank top. This outfit does not match, but it is her favorite. I have a feeling it is a comfort measure, as the temperature was 90 degrees. She insisted, and I let her wear it. I knew that it was not worth fighting over. Good choice. We got the library, where Ruth grabbed my hand. Last time, she ran downstairs without a second glance. I sat nearby as she painted her rocks. Everyone was shown how to make a lady bug. Ruth made two.




Then, she made a cat and one with a heart. They were adorable. Imagine my surprise when she asked me if I thought she could sell them. 50 cents for the small ones, and a dollar for the larger ones. I said I thought so, and she tried it out on my pal, Meg. When asked what she is going to do with the funds, Ruth eagerly replied "I am going to put it toward my Camp Wightman fund."
See, when we let go, sometimes our kids can find their own way...

Going Out into the World

One thing that can be said of our Sensory Seeking Kids: they want to experience everything. Touching helps them to understand things they have not experienced, or experienced to its fullest. Investigating and moving can make many of us tired after only a few minutes, but it is not enough for them. At home, it is workable. We automatically convert our living space to meet the needs of our families. But out in the world…. It can be a task and a half to meet their needs.

Ruth is at her first "sleeping over camp". There is a Baptist camp that is less than 10 miles from our home. It helps to know that if there is a need, we can be there in no time. :) That said, I must say that the one thing about leaving her somewhere is in trying to explain her behaviors and how to best suit the need, either for out put or for retreat. The same situation can present different outcomes.

My mother suggested I write a letter to explain how to best handle her needs. I thought about it, but it caused me great anxiety. How can I possibly explain what to try in all circumstances? I can hope that I have prepared her to follow the rules, and to navigate her needs within the boundaries. I can only ask that the leaders be sensitive and understand that she is not always trying to misbehave, though sometimes she does. :)

My comfort level was met when I registered her, though the counselor did not know anything about SPD or anxiety. He seemed to be open to understanding, and well, it helped that there is a woman in one of the other sessions that jumped in to offer her aid. (She is a paraprofessional and knew what to ask.)

It is hard to let my girl go out into the world. It may be that she is out there on her own, and is just 8 years old. Or it may be that she has to get through a new experience on her own. But, I have to admit, I have a feeling of comfort in letting her go. I feel the foundation is laid, and she has to begin to build her own life...

This is the summer of:

• Learning to ride a bike
• Cleaning out a bedroom to be comfortable and have a place to play
• Fishing-- putting worms on hooks, and pulling fish off of them
• Being able to cook simple foods
• Swimming both above and below the surface of water
• Going to overnight camp for the first time
• Camping in the yard with friends
• Remembering to handle small animals with care
• Playing ball with the dog
• Wearing a plastic shopping bag as underwear to meet the "keep your bottom covered" rule
• Discovering that spaghetti strap bras are good under tank tops
• Reading 10 chapter books before vacation is half over

There are so many things that are important to our sensory kids. Being able to be in an environment that is comfortable is high on the list. When our kids are feeling safe and comfortable, they seem to be able to be more focused, and better to interpret the world around them. The willingness to try new things with out melting down is stronger. It makes one wonder how to give them this feeling all year long...

Learning Hands On

In my house we have raised boys. I have helped to capture snakes, watched a snail lay eggs, caught tadpoles, and the list goes on. I guess I figured that if they were interested, then I should help them learn. Was it my greatest desire to create a home for the ring snake that ended up dying because it stuck to the duct tape that I placed on the top of the terrarium after it had gotten out in the house and hid under the dishwasher? No, not really. But, I just find this to be one way that children can learn about how things work.
So, I shouldn't be surprised that Ruth thinks nothing of carrying in critters like a grey tree frog.
Of course, I was not really surprised when she decided to place it on my shirt, either. She found it while out on a walk with her beloved Grandpa. He finds her to be amazing. As he pointed out today, "When we are on a walk in the woods, there isn't a rock or a log that she can overturn that is passed by untouched." On my walks with Ruth, we seek out gypsy moth caterpillars, earthworms, beetles, slinky or scaly animals, rabbits, and owl pellets. (Yes, folks, that would mean dried owl puke.)
Ruth's newest enjoyment is fishing. I asked her last night, while she and I were out fishing on a mother daughter date (I cannot believe this...) what her summer goal was. "I want to fish as much as possible." was her honest response just prior to my catching a small bluegill. It was the only catch on the evening. I don't have any tools for removing hooks from the fish's mouth, and Ruth somehow, without a knife or scissors, cut the line. As we drove home, Ruth talked about taking the fish to Grandpa's to have him help us. I explained that Daddy was able to help, and she pouted a bit. When I asked why she said, "Grandpa would let dissect it."
I must admit. It was too small to eat, and there was no way it would have lived. I told her that I would let her dissect it. I mean, it was a way to let her explore, hands on, while not ruining a food source. She ran into the house and grabbed a steak knife. By the time I reached the utility table, she was sawing away. "I need some help, this is too hard for me to do,"she pleaded. I went in and got the fillet knife, and she tried again. "wow, that made it easy." I will not go into the gory details, but let's just say I will not look at a bubble the same way again. She explored until we found a red worm crawling around.
I find that we can teach our kids about things. I mean I figure I could either be the 'coolest mom' or the worst. I am not a frilly girl. I know how to wear a dress, and make up, but it is not my every day lifestyle. I had forgotten along the way the days I spent creating fishing poles from string, a stick and a safety pin. I recalled today the days spent with the boys next door tracking water bugs and earthworms. Or late afternoons fishing alongside my Dad, minus my 5 siblings which was a rare treat. I guess that I hadn't considered the prospect of having a nature girl in my life. But I can say one thing...
I am thankful to be able to share with her some hands on learning.

Worth its weight

I must say Ruth's new blanket is getting a work out. She snuggles under it at night to go to sleep. It is dragged around to relax with on the couch. And, when she becomes distraught, it has helped in her regaining control.

When Ruth gets anxious, she begins to escalate. Her crying becomes almost crazed, and it is hard to get her to calm down. Once she begins to spiral out of control, it can take all afternoon to get through the issue. Twice this week, we went there. It is overwhelming for her, and for those around her. Often it is a combination of anxiety and over stimulation. Both times, I reached to hold her in my arms, and while she excepted that, it did not calm her. Then, I remembered the blue gift from heaven. (Well, from Aunt Beth and Uncle Jim, but still...) We got the blanket and wrapped her up. She covered her head all the way to her toes. Within minutes, we had a crying, but not uncontrolled child. With a half hour, there was laughter, and we could move on to new things. I can not say just how much this is worth to us...

A gift...

With a child with severe sensory needs, you will find there is a multitude of information that says they need to "work it out". Often this means "heavy work", or applying pressure in the form of massage or blankets/ vests/ lap pads.

Today, Ruth received a gift. One that has been longed for. Her god parents purchased for her a weighted blanket. It is a glorious fabric-- 'soft and silky'. The look on Ruth's face as she wrapped up in her "giant hugging me" blanket, well, it was priceless.

I look forward to seeing how this works in the long run. I believe it will have a great impact on her anxiety and on her well being.

All I can say is "Thank you" for the gift. It means more than words can say...

Priority

I was luck enough to go to a Sensory Processing Workshop a couple of weeks ago. I have many things to share, but I do not have time right this minute.
One thing I want to share is about how to prioritize the needs of our sensory kids.

In our home, we deal with many sensory issues. Ruth is the only diagnosed person, but we all, even you, have sensory needs. You pick up the smell of something, the way your clothes fit today, what you have had to eat, these affect your ability to work effectively. So, how do we create priority in a home when one person is seeking extra input (more smell, more noise, more taste) while another is needing to withdraw from it?

You know what I mean. Think about the car. You are driving and do not know where you are. Do you turn down the music? This is a decrease to your senses. Are you with me?

Okay. I think it is fair to say that in our home, it can be crazy. It is rather small, and there is a large doorway from the living room to the kitchen. The TV is almost always on. Often, there is at least one person melting down because of an overload. You need it quiet to talk on the phone, or to do homework.

There are times when this becomes a battle field. UGH!

The solution: The person who is in need of less stimulation gets priority. It is not really simple, but it is a good guideline. I put it to work last night. Here is how it worked:

On Tuesdays, Ruth has a two page math assignment for homework. It can be confusing, even for grownups. She has to write how she is figuring out a multi step problem. Writing is a struggle as it is. So, last night, she began to break down. (I had left the room to answer nature's call.) The TV was too much for her. Two weeks ago, this would have resulted in a huge fight between she and her older brothers. I would have been screaming. Not fun, and not good for getting school work done. I was able to intercept before the fighting began. I calmly explained that Ruth's needed to be at the table for complete her work. She needed it to be quiet for the next 5- 10 minutes. The boys made their typical comments like "I'll remember this". I explained that I would try to remember when the need is theirs as well, but please try to understand. Ruth finished her work in a matter of minutes. Without tears. :) Then, she said, "I need it to be quiet so I can read." I explained that reading can be done in her room. "Oh, yeah." she replied, and off she went.

Priority goes to the one who is avoiding. The reason? As their needs change, you can add stimuli back. But, if there is too much stimulus, then it is hard to judge where to cut back. So, next time you are in a situation where there is a fight over how loud something is, turn it all the way down. Then, ask the one who is struggling with it if we can add it back, slowly. Sure enough, before you know it, there will be a bit of peace in your life, instead of all out warfare...

Dealing with cravings

This is one of the hardest parts of our journey.

How do we deal with cravings? For Ruth, the cravings are sweet and salty. These are not good for her, especially since we are a family that struggles with weight. I think that I have a handle on things, and then, I realize that I likely do not.

We have candy in the house. We make waffles and pancakes. Cake is something that we have at least once in a while. At this time, there is soda in the basement.

All I can say is that I try my best.

We offer her fruit, not juice. The soda is left from a special occasion, and actually Ruth asked that we put it away so she would not see it. That is why it is in the basement. Yes, we had waffles with syrup. I could beat myself up, but it was what we had available at the time. Ruth is just as happy with scrambled eggs, especially if she makes them. The candy is an issue, but even that is undergoing some changes. The chocolate is darker each time it is purchased. It is not intended for Ruth, but she can see it, smell it, and I cannot hide it. So, we are working on it being a healthier type.

I mean, I am trying to limit my own cravings for sugar. It is not easy. The next best thing I can do is to say that we need to increase the Sensory Diet to include more exercise activities. If we can stabilize the weight, then we will be doing a good thing.