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Spinning Out of Control

March 9, 2013 By Leave a Comment

I have a friend on Facebook who plays games quite often. He & his wife share the account, so I find it funny when he plays games and I see several notifications that “she” is “spinning out of control…” again. Have you ever felt like that? It’s what I call the “stop this ride; I want to get off” sense of panic. Ever get the feeling that life is just too overwhelming and you simply can’t keep up with it?

A week or two ago, this was how I felt when I had so many questions and concerns about my daughter, myself, and my family in general. It was too much for me and it was all beyond my control. The very next day, a relative of mine had that same sense of anxiety in his voice; questions about a big move, a job that wasn’t what he expected, and what the future held. When looking at him, I saw myself more clearly. I had greater understanding for him and understood how he must have felt.

That’s why my thoughts of late have been about “control” or our “lack thereof.” Do any of us really know what tomorrow will bring? Of course not; but we know the One Who knows.

“Behold, I am the Lord, the God of all flesh: is there anything too hard for me?” (Jeremiah 32:27)

It may be too hard for us, but never for Him.

I mean, honestly, if God can create the heavens, the earth, and all that is in them, why do we think WE must be in control of things? Can we compete with God? Are we simply impatient, like the Israelites after they left Egypt?

We can easily find fault in the Israelites for whining and complaining so often, after God continually provided for them miracle by miracle. We have their story recorded in the Bible. Yet, consider how you would feel if you left behind the only life you knew to follow a path totally unknown to you.

Isn’t that the sort of thing that our kids with hidden disabilities face so often? They are anxious because they have “no control” over what may happen next. Their fears drive them to compulsions (those with OCD, like Flory) just so they THINK they have control over SOMETHING; only to find IT has control over them. It’s a vicious cycle.

To truly help them, besides medications and therapies, don’t we need to live the truth in front of them? Are we prepared to face the unknown with faith in the One Who is unseen? As parents and loved ones of these precious family members, I think we owe it to them (as well as to ourselves) to “let go” and realize that we must live by faith and trust; that we must cling to the Word God has given us and the times we know He has shown His personal love.

“Take therefore no thought for the morrow; for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.” (Matthew 6:34)

I also like to remember the old saying, “Don’t borrow trouble.”

“Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father. But the very hairs of your head are all numbered. Fear not therefore, ye are of more value than many sparrows.” (Matthew 10: 29-31)

To sum up my thoughts (and to avoid using the bazillion wonderful verses I also found), I’ll leave you with this verse: “Thou wilt keep him in perfect peace, whose mind is stayed on thee; because he trusteth in thee.” (Isaiah 26:3 – taped to my computer, lest I forget.)

Blessings,

Grace

Filed Under: Anxiety, Direction, Encouragement, Faith, OCD, Provision, Trust Tagged With: , , ,

Connected

October 31, 2012 By Leave a Comment

As I write this blog, it is 4:46 a.m. on a Sunday morning; a time of day I, unfortunately, often awaken with a backache. It has oddly become “my time,” so I decline from taking a muscle relaxant and settle for some strong Ibuprofen and a glass of milk. I’ve been “chomping at the bit” to write this first blog.

Both of my children were born overseas in foreign hospitals and both were c-sections. However, the two occasions could not have been more different. My firstborn, my son, was captured on film, a healthy boy loudly crying in protest to the cold reality of the world outside the womb. Twenty one months later, it was a blessing that we forgot to bring the camera. An inaccurate dose of epidural led to a rapid, panicky heartbeat and general anesthesia.

I later told my mom that I was worried that I wouldn’t bond with this child in the way that I had so readily bonded with my son. I didn’t have the same joyful birth memory that I’d had with her brother. It really concerned me.

A year later, when we moved back to the states and my children were getting to know their many relatives, my mom smilingly reminded me of that statement. Flory didn’t “know” these people and her daddy had gone back overseas for the summer to complete his contract. I couldn’t go anywhere without her. She stubbornly clung to me and refused to go to anyone else. Forget those silly notions of that rocky beginning! We were definitely…connected.

When Flory was around eight and a half or nine, she was crying upstairs. I’d scolded her for something or told her she needed to do something. She came downstairs and felt the need to explain her tears. “It’s too much,” she sobbed sitting on my lap. “Every day I have to do my homework, put away my stuff, …” and she went on to list normal, everyday things at school and home that she was expected to do, just as anyone else her age. For her, it was all too overwhelming.

Suddenly, I understood. You see, by this time in my life, I’d been diagnosed with multiple sclerosis. Everyday things that most homemakers did routinely had proven to be too much for me. It overwhelmed me and it was “too much” so often and felt so unfair. Nobody else seemed to comprehend how I felt.

I hugged my little girl and told her soothingly, “I know, honey. I know.” As I rocked her in my lap, to comfort her, I realized just how much her circumstances resonated with mine. We…connected.

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, Who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort which we ourselves are comforted by God.” -2 Corinthians 1: 3,4

Halfway into this blog, my daughter awoke and called for me. She couldn’t sleep and was scared. I climbed into bed next to her and we snuggled together until she was able to sleep again. I am glad we truly did “bond” because I still get to comfort her like this. I will enjoy the moments I can comfort her with snuggling while I still can.

-Grace

Filed Under: Anxiety, OCD, Uncategorized Tagged With: ,

Taking Thoughts Captive

September 26, 2012 By Leave a Comment

My daughter, Jocelyn (ADD, OCD) asked me if it is normal to fixate on things. I reminded her that OCD stands for OBSESSIVE, COMPULSIVE disorder therefore the obsessing and then the compulsing and then the vicious cycle of the above. Way to state the obvious Mom. I think that even as neurotypical women we struggle with our thought life.

2 Corinthians 10:5 says “We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.”

Philippians 4:4-9 says “Rejoice in the Lord always, I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near, Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy–think about such things. Whatever you have learned or received or heard from me, or seen in me–put it into practice. And the God of peace will be with you.”

I reminded her that we have to control our thoughts and bring them to Christ even if it is necessary on a minute to minute basis. We can hold our thoughts up to the standard set for us in Phil 4:8 to see if they are beneficial to us. Our minds are a battlefield that we need to win the war in. It must be so much harder when she is wrestling against OCD but it is a battle that we all face. It is crucial to our spiritual walk that we give thanks to God and bring our thoughts to Him continually. He promises us that “the peace of God, which transcends all understanding, will guard your HEARTS and your MINDS in Christ Jesus.”

Lord help me to submit my thoughts to you continually and teach my children to do the same. You promise your peace and that you will guard our hearts and minds in Christ Jesus. I want your peace and my mind and heart guarded. “May the words of my mouth and the meditation of my heart be pleasing in your sight, O Lord, my Rock and my Redeemer.” (Psalms 19:14) Let my words and thoughts be pleasing always to you Lord. May my mouth praise you all day and meditate on your ways and glory. Amen

Twyla

Filed Under: Bible, Emotions, God's presence, OCD

The Collector

September 6, 2012 By 1 Comment

Cleaning Noah’s room is among the most daunting of my weekly challenges. I have pared down his toys to the most essential – though at eight, he is mostly interested in electronics and legos, and not much else. I have vacuumed – over and over – the hay and bedding kicked out by his fat rodent of a guinea pig, only to have it re-appear when Noah sneaks him out in the middle of the night to play with him. (Hay and bedding also appear when Noah shows up in my room with Bubble Gum’s glinty little eyes peeking out at me from one of Noah’s knapsacks). But it’s cleaning the flat spaces – the spaces where things can be arranged, or displayed – that taxes me most. Everything on dressers, bookshelves, or chests is particularly arranged, it has a meaning, it is placed just-so.

Obsessive Compulsive Disorder (“OCD”) can sometimes be a joke. Even in our house, our family used to hint we were all a “little OCD.” We needed square corners on the bed sheets, a particular thing cleaned a particular way. To this day, I make lists – only to cross off the “accomplished,” and add more to the “to do.” I have created my own hell, you see. Because I never get it all done.

OCD is a greater burden to those with it than some of us will ever know. It’s an anxiety disorder in which recurrent, unpleasant thoughts (obsessions) are sought to be controlled with certain repeated rituals or behaviors (compulsions). OCD and Asperger’s Syndrome go hand-in-hand. Not surprising, considering that anxiety is the most pervasive emotion of Autism itself. Sometimes, Noah manifests this anxiety through hand-washing or door closing. Sometimes, he expresses by hoarding. His little pieces, his collections and piles are all part of this.

Here is this morning’s collection:

All of these things are not like each other.

A sting-ray tail, a dessicated beetle, a rock, a yellow feather, a candy tin, and a camel Matt and I brought home for Noah from a trip to Israel.  The last in this list, Noah received from us with no enthusiasm whatsoever, remarking flatly to Grace, “Look, Grace. A fragile camel.” It was fragile. And probably the wrong gift for a five year old. We told him he had to be careful when playing with it. I may as well have brought him home Murano glass.

Noah’s grown in tolerance for my moving of his things in order to clean his room. He used to scream and throw a fit, and now, if it’s really important, he only whines with exasperation, “Mom… That was there for a reason!” He can never articulate the reason. Not with enough specificity to understand, anyway. The next day, another display will replace it.

Noah’s mind is prone to fixations and puzzles, but it is complex and deep and fascinating. Every esoteric display is a key to his mind’s workings. I pray for “discretion and understanding” (1 Chronicles 22:12), for today’s display, and for those that follow.

- Sarah

Filed Under: Anxiety, Asperger, Emotions, Family, OCD, Parenting, Uncategorized Tagged With: , ,

Clean Your Room!?

August 27, 2012 By 4 Comments

I am trying to organize and clean up my home and I need my children to help me.  Is this not the cry of most mothers?  I struggle to understand why I can’t tell them to clean their rooms and they will go and actually accomplish this task.  To me it is so simple.  So I asked my 21-year-old daughter (ADD/OCD) what goes on in her head when I ask her to tidy her room.

This is what she told me: “Every book has a specific place on the shelf; however I do not organize them alphabetically, solely because of the various sizes and shapes, it would bother me more; but they do have specific spots on specific shelves and must go back in those exact spots. DVDs, unlike books, do not have specific spots, but I arrange them by color. If the binding on the DVD is white, or a light color,  it doesn’t go beside another DVD with the same color binding. It goes beside a darker colored binding. Clothing in my closet, is organized by short sleeves, sleeveless, work shirts, casual (around-the house) t-shirts, hoodies, tank tops, work pants, and then finally, dresses and skirts. Then each of these categories is further organized by how often I wear the clothing items, most often to least often. Store receipts in my desk drawer are organized by store, and then by date, in a small file folder. ”

Okay so that sounds pretty organized but what about all the papers on the floor, bags of various items stuffed in corners and clothes in piles on a chair?  There is a disconnect between what clean means to my children and what it means to me.  I am trying to learn how to break down this task into jobs that the children can accomplish and will make a difference in their rooms.  Since I am naturally organized I don’t really think about the cleaning that I do as I am doing it.  So we begin with dialogue to try to understand each other and communicate effectively.  The ADD is hard enough to work around but her OCD is enough to send me screaming “Please don’t tell me it hurts my brain too much”.

Lord give me wisdom and patience.  Help me to teach my children the skills they will need to be self sufficient.  I need to learn a balance between helping and enabling.  You know all the inner thoughts of my children and what their true needs are.  Thank you for the unique individuals that you have blessed me with the challenge of parenting.  What a privilege and honor I have been given to be their mother.  May all that we do in our home bring glory to you Father. Amen

~ Twyla

Filed Under: ADD, OCD, Parenting Tagged With:

ADD, OCD and LD oh my!

March 30, 2012 By Leave a Comment

Do I view the glass as half empty or half full? It would be easy to ask the Lord why He has put so much on my plate but most times I consider it a compliment that He has entrusted me with so much. I believe it really helps to have this perspective both for my sanity and the peace to be an effective parent.

Jocelyn was removed from our drug plan because she is over 21. She decided that her ADD meds were too expensive to take on a daily basis and the “fun” began right away. It is so easy to forget how much the meds work. There were distractions everywhere and she was unable to focus on even the simplest task. Her meds suppress her appetite so she basically mowed her way through the fridge and cupboards. It is a good thing that she is thin. We saw a homeopathic medicine for lack of concentration that was on clearance so she tried that and I was surprised that it did help although it was not the same as her prescribed med. When she was first diagnosed I resisted meds until she hit puberty and then it was obvious that she needed them. She starts a new drug plan April 1 and then it will be back to daily meds again and it will be a day of celebration for sure.

Luckily her OCD meds are not as expensive so she stayed on those. I remember when we were looking for clothes for her I would ask her why an article of clothing was not acceptable when it fit so good and looked good on her. She would describe in detail how it bothered her and I quickly worked out a shopping compromise. I would not ask her why it did not work and she would simply supply a yes or no answer. It made shopping a lot less painful and I learned to accept her choices (within decency limits). It started to actually make sense once she was formally diagnosed with OCD.

My 10 year old daughter with LD is making great progress in school. She has a male teacher this year and I really think that it makes a difference in her school work. She seems to be taking responsibility for her work more than ever before and she has decided that she likes to read which is a big help. She is learning the benefits of cursive writing and it is making it easier for her to do her own work and rely less of others to scribe for her. Bottom line is a lot less stress on me and improved grades for her.

“Lord thank you for trusting me with these children and all the challenges that we face as a family. Continue to give me your perspective and wisdom to be the mother that you designed me to be. Help me to see them through your eyes and love them with the love that you channel through me.”

~ Twyla

Filed Under: ADHD, grace, learning disabilities, Medication, OCD, Parenting Tagged With: , ,

So far, so good…

October 14, 2011 By 5 Comments

I am thrilled to post that we are having a good school year so far. That sounds like such a simple statement, but something that many parents probably take for granted.

Last year was, for lack of better terminology, a disaster. G-man dreaded school almost everyday. He did not want to do his homework, or read his books, or practice his sight words… or anything related to school. Getting him out of bed was a struggle. Getting him in bed at night was a struggle. Everything in between was an emotional landmine waiting to detonate. I tiptoed around his existence, attempting to circumvent the meltdowns. He never had behavior problems in school, per se, but his teacher tiptoed around him as much as I did, and catered to his every whim.

So, of course, a giant fear in my mind was that we would start this year, first grade, with greater expectations and harder work; therefore compounding an already established problem.

BUT…

I can’t speak highly enough about the teacher we have this year. She is organized (hallelujah)… everything is labeled and color-coded and sorted (double hallelujah), and G-man thrives in this environment! His day is structured, timed, and check-listed to exhaustion, and this makes us HAPPY!  He loves school and is a completely different child!

I do not expect that this will be forever, but for now, I will be thankful for such a blessing, however long it lasts!

Psalms 51:15 “0 Lord, open you my lips; and my mouth shall shew forth Your praise”.

Hopefully,

Cape wearing Mommy

Filed Under: Emotions, Encouragement, Gratitude, JOY, OCD, Tourette Syndrome Tagged With: , , , ,

IEP FAILURE!

August 22, 2011 By 3 Comments

Last year, our sweet G-man started Kindergarten. What a big year for us!  October of last year was also when we got our Tourette diagnosis.

Being the strong, advocating, proactive parents we were, we immediately met with G’s teacher, and the Developmental Specialist of the school. Although G wasn’t having any “trouble” per se in school, she urged us to go ahead and jump on the IEP process, getting a safety net in place for him should trouble arise. I thought this sounded like a fabulous plan, so I started jumping through the hoops of obtaining the necessities for the process. I obtained a letter of diagnosis from G’s diagnosing Neurologist and pranced back to school. PIECE of CAKE!  I had read so many horror stories of the IEP process, about uncooperative school personnel and school districts and endless denials and appeals. This was going well and I was feeling good.

Then the trouble began.

My letter wasn’t adequate, said the Developmental Specialist. It only named his diagnosis, not the “issues” he had.  But wait….. we just discussed that he hadn’t had any real trouble yet … (in Kindergarten, no trouble arose because his teacher allowed him to spend unlimited time sharpening the classroom pencils and sorting them, point down, with exactly 10 pencils in each of the 6 containers …. but that’s a WHOLE different post)….

I digress.

So I trek to a Child Psychologist, with whom I waited for about 4 weeks to get an appointment. G-man performed beautifully in his interview, earning himself a hefty diagnosis of Obsessive Compulsive Disorder, which often accompanies Tourette Syndrome. And I earned myself a hefty four page letter spelling out every single complication with school that G-man might EVER have until college. Into the school I marched, triumphant as ever.  THIS was the ticket. It was a little harder than I originally thought, but we were on our way!  The Developmental Specialist glanced over the letter, and VOILA!  It was golden. So the next step is to hand it over to the principal to continue the process.

At this point, it’s Christmas break, so we had a bit of an interruption.

January ….

February ….

I never heard a peep back. SO, at the beginning of March I approached them again. It’s spring, we all have a fresh perspective. And we are still waiting on the principal to look it over.  After three face to face visits in a three week period, I get my call from the principal.  She will address it FIRST thing after spring break.

~~ big deep cleansing breath~~

And finally, the day comes. She calls. She leaves me a message. I return the call, only to hear that there is NO reason in the world to LABEL our G-man. He’s brilliant, he’s having NO trouble, there are NO COMPLAINTS from teachers, WHY would we want to put something in place that will follow him until he graduates high school, when this might NEVER even become an issue?  Obsessive-Compulsive Disorder doesn’t even qualify for IEP coverage (skimming over that minor little  TOURETTE diagnosis).

And at this point, we are in the last week of school, and I can clearly see now it’s a much larger uphill fight than I ever thought. So add me to the list of  those people who the IEP process has failed, at least on the first attempt. Perhaps I could’ve been a stronger, in their face type of advocate from the beginning … but my child has to walk these halls for the next 5 years, as well as his two siblings right behind him.  I have read ALL the legislation pertaining to IEP and Tourettes, and exactly how and why it qualifies.

So now, we have a brand new school year beginning. Where do I go from here?

Deciding my next move,

Cape Wearing Mommy

Filed Under: IEP, Journey, OCD, Parenting, Tourette Syndrome Tagged With: , , , ,

Focus

July 21, 2011 By Leave a Comment

One of the things we like to do to pass the long, hot summer days is to go to the science museum. It is about a 35 minute drive for us, so we have a yearly membership. The kids are always entertained, and it’s so much more educational than parking them in front of a television when it feels like it’s 147 degrees out.

Yesterday was one of those days.

While this blog focuses on “hidden disabilities,” I would like to point out what I view as a strong hidden ABILITY. G-man has TS+, with his “plus” being OCD. There is much discussion about the genetic components of Tourettes, but no one has definitively identified the mechanism of heredity. What is known, however, is that mothers of children with Tourettes have a strong tendency to have OCD. This holds true in our case, as I too, to some degree, am most certainly plagued with OCD.

With that aside, I go back to the science museum. I am amazed at my G-man’s ability to focus. He can find one exhibit that catches his attention, and he can spend all day planted there. While most children in the museum (my other 2 included) jump from one exhibit to the next, excited about the over stimulating stream of new sights and activity, my G has all 5 senses engrossed in one activity. Sure, this can cause trouble when my other 2 are ready to move on, or the line behind G-man becomes increasingly long, and I have to FORCE him to move on … But his focus is amazing to me. His attention to detail, for a 6 year old, is unmatched. During the school year, we had some trouble with transitioning from task to task. I’m sure, in the future, this will continue to be an issue. But I prefer to view this as an ABILITY that not everyone has. Some day, hopefully my G-man will choose a career that capitalizes on his ability to focus. An engineer, perhaps? Or an architect, where fine detail is oh-so important….

Until then, we will just have to work through the complications of his “ability.”

Amazed,

Cape wearing mommy

Filed Under: OCD, Parenting, Tourette Syndrome, Uncategorized Tagged With: , , ,

Conversations in the quiet place

June 29, 2011 By Leave a Comment

I am not certain how you all out there are handling summer, but I am attempting to keep my kids as busy as possible. Idle minds seem to find trouble, at least in my house….

One of my kids’ favorite things to do is go to the library. They love to pick out books and “read” (which at 5 and 6 is minimal…), swap books a million times, settle on two or three, and head home. For my sweet G-man, however, this is easier said than done.  Making a decision of SUCH GRAVITY, to him, is nearly impossible. Our conversations go about like this…

M: G, pick out TWO books to take home.

G: But I want THREE.

(Note here, if I said 279 books, he would say 280. The drawn line is just too tempting to cross.. We had discussed TWO books about 12 times in the car on the way, preparing for this discussion)

M: We decided on two, now pick two.

G: But I LOVE THREEEEEEE. LOVE them. LOOOOOVVEEEE THEMMMM.

M: We decided on two. If you get three, everyone gets three, which equals nine books that mommy has to keep up with. So TWO. TWO BOOKS.

G: I just can’t decide. What if I pick the WRONG two books and I’m stuck with them for a whole WEEK until we come back to the library to exchange them? What if I decide that these aren’t REALLY the books that I love?  What if they aren’t as good as they look?

and so on and so forth… 

Talking him out of these circular discussions over such trivial things is part of my daily routine, and my daily challenges.

What are your daily challenges??

Attempting sanity in the summer,

Cape wearing mommy

and so on, and so forth…

Filed Under: General, OCD, Parenting Tagged With: , ,
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