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Sanctuary

December 15, 2012 By 1 Comment

There are times in all of our lives where we are looking for sanctuary – a safe, peaceful place. At this time of year, we all hear the story of Mary and Joseph looking for sanctuary – a safe, warm, peaceful place for Jesus to be born. Many of us moms are looking for just a few minutes of sanctuary where the crazy schedule and the multitude of demands upon us can be ignored in favor of a deep breath and a moment of peace.

Those of us with children with hidden disabilities are especially reminded this time of year that our children are seeking sanctuary from the chaos, unknown people & places, and unpredictable schedules. As much as this whirlwind season drives us “neurotypical” people crazy, that craziness is intensified in our children.

My 16 year old son, Daniel, (ADHD/ASD), has demonstrated that need for a peaceful place many times over the years and at this time of year in particular. Several years ago, at a family Christmas gathering out of town, we were spending two nights at a family member’s house. Daniel is used to having a place to retreat where things are quiet and safe and just like he wants them to be (a.k.a. his room or “man cave”). On this Christmas trip, there were so many people sleeping over that everyone was just grabbing a place to sleep on couches and recliners. There were absolutely NO rooms in the inn where he could retreat and be quiet and alone. So, while the games and music and video games were winding down late at night, Daniel decided to retreat to the bathroom for some quiet – to read and play his DS. This wasn’t a problem until everyone went to sleep and the master bedroom’s bath was behind closed doors for the night, leaving the bathroom that he was in as the only one for the rest of the crowded house. Unintentionally, Daniel fell asleep in there on the bathroom rug. Did I mention that he is a hard sleeper when he finally falls asleep? Needless to say, my husband wasn’t very happy when he had to go the bathroom in the middle of the night and found that the hall bathroom was locked, forcing him to go outside in the freezing cold! We have laughed over this story many times in the years since but there was no laughter that night (from my husband at least).

Since then, our extended family Christmases have been just as chaotic but Daniel has learned to stake out a place to call his own (sometimes behind a couch or in one of the free bedrooms) or we sometimes choose to only stay one night. Even on immediate family vacations to unfamiliar places, Daniel needs a sanctuary and often chooses a closet or extra bathroom or even his own room if there is one for him.

I hope we all can remember this Christmas season to take refuge and find sanctuary in the only true peaceful place – the person of Jesus Christ. I hope I can remember (along with all of you other busy parents of kids with hidden disabilites) to pray, focus on the Lord and his birth, take a deep breath and enjoy Christmas with our special Chosen Families.

~ Brooke

Filed Under: ADHD, Asperger, Autism, Christmas, Extended family, Uncategorized Tagged With: , , , , ,

Dog Lovers, We Are!!

August 18, 2012 By 1 Comment

I have to start out by thanking those of you who responded (by public comment or by private email) to my prior posts from July 2 and July 10 about our contemplation of adding a dog to our family. Your advice, along with further research we did amongst pet-owner friends and relatives, and lots of reading books and online was so incredibly helpful and really helped lead us down a path of feeling fully prepared (or as prepared as one can really be).

We just picked up our sweet puppy at the airport today, yes he arrived via a flight. We chose a Labradoodle based on many peoples’ suggestions and research and while we did find a couple breeders in our state none of them offered exactly what we were looking for. We had our eye on a certain size (medium) and we also hoped to get our pup at a certain time so that we could devote a couple weeks training time after summer activities ended and before school started up. Thankfully, we also found a breeder who was raising the pups in her home and spending time with them, and could fully consider the temperament we were looking for and steer us to a pup in her litter that matched our needs.

All this led us to our sweet little Buster. God has such a sense of humor. I never considered myself an animal lover and I’m so excited to have a dog! This two plus months of research has just really solidified our desire to raise and love a dog. I thought I’d have a hard time still being particular or running a clean home, I learned some really interesting tips that people do with their pets to help with the things I was concerned about. To be honest … I’m also okay with being softened around those edges a bit. ;o)

We’re just so excited for what is ahead. We don’t have it all figured out but we have a good handle on what we’re doing right now. We’re still researching training options for once we get past house-breaking. We did find a service dog training opportunity in our area and may consider that again at some point but once he’s ready we’ll start with regular obedience training (it’s just a matter of where or who).

For now, I leave you with a visual of our past couple months leading up to today and then today’s big event. Enjoy, and thank you again!

At the wishing well at Animart quite some time ago. "Mom, Can I have a quarter to throw in instead of a penny?" =) "I wish for a puppy, I wish for a puppy, "I wish for a puppy"

Doing research included picking up many books at our local library!

While considering dog ownership we seized every opportunity to hang out with dogs. Here, Owen enjoyed reading with therapy dogs with his siblings and neighbor friends.

Owen learned to ask dog owners everywhere he went, "May I pet your dog?" He enjoyed petting many different dogs.

Meeting Buster at the airport

I love him!!!

Buster you are so cute!!!

Playtime outside!

Dad, Maella & Buster (Maella is very excited to be a big sister to Buster!)

Owen is so excited to have a dog, he loves Buster!

Our oldest, Ethan, is very excited for Buster too!

Buster's first shower! We knew he loved water from watching videos our breeder had sent and he kinda needed a cleaning up after his long day traveling so we decided to give it a try. Buster did awesome, loved it!

Before putting the kids to bed we read everyone a book about a little dog who looks alot like Buster, When Rocket Learned to Read (there's even a story about a dog named Buster in the book!)

Buster. We've fallen in love with a dog. :)

 

Filed Under: ADD, Asperger, Autism, Family Tagged With: , , ,

Service Dogs – Part 2

July 10, 2012 By 3 Comments

I’d like to start out by thanking those of you who responded and commented to my last post, Service Dogs for Kids with Autism. Your feedback has been extremely helpful!

One comment in particular really spawned this follow-up post. I think the commenter brought up very important points. I agree with her on all of it. The decision of pet or service dog ownership is a big one, and should not be taken lightly. Being a person who has very little experience with dogs, I need the advice of those who’ve been there and are experienced.

Dogs are going to be “messy”. This is where I just don’t know – how messy? Can I still run a clean, efficient home and be a dog owner? Does one have to give up control of her home to be a dog lover? I’m guessing not, but this is where my knowledge on the subject is nil. And this is the stuff you really cannot read about in books or online. About ten years ago I spent loads of hours doing research on dog breeds as I was considering getting a dog (early in our marriage, pre-kids). I can read up on breeds and training, I can set up a space for the dog, I can even take classes or talk with other pet owners for tips on training, but I haven’t found any books on the subject of “keeping home as a pet owner”. And when you have no example to follow (your own parent or friends you knew or spent time with as a child, teenager, or even as an adult) – you are left to learn it all by research.

I’d like to delve into the practical side of this one a bit more. Again I feel that the commenter made such a good point here. If you are going to get a dog, just prepare yourself now… you will have messes. Even very well trained dogs will have accidents, will get sick, will get mud on their paws, will leave behind hair to be vacuumed up, and more. These are things I’ve read in other comments and have been told by others in the past couple weeks, as well. But as I’ve been told by a couple people now, when their dogs had to be put down – they’d take those clumps of hair back in a heartbeat if they could have their dog back.

So here’s the thing… God made me as someone who really appreciates order. That’s part of my Type A personality, but I’m not a perfectionist. A happy home is more important to me than a clean home, but I still don’t like dirt. I didn’t grow up in a family of animal lovers. Neither did my spouse (they had farm animals, but no house pets). I don’t necessarily think that just because both of us grew up unexposed to pets and just because we have expectations of a clean home, that a pet may not be right for us. I do think that because of those things, we need to spend more time doing research to be fully informed to make sure having a dog is the right decision for us, and we also need to make sure that the lifestyle required to be a dog owner is something we’re willing to accommodate. On the flipside of those accomodations and messes, I know from hearing many personal stories recounted by others, that a dog will likely bring many blessings for both Owen and our whole family.

This is where I think one shouldn’t necessarily disqualify themselves as a potential good dog owner/family for a dog, just because you aren’t a dog lover by “nature” or because you like a clean and orderly home. Sometimes we become qualified because that’s where God places us, or that’s where God needs us. Maybe my Type A personality will change a bit over the years because my child will benefit from the companionship of a dog. Maybe God will bless me and or my son more than I can know now, from the experience. Maybe my initial nature (or rather, nurture, if you want to consider that I was raised without much exposure to pets) doesn’t call for me to be an animal lover, but my circumstances call for it. I know God has a sense of humor and maybe God’s going to take my order down a notch and in exchange He’ll bless my family with a new member who will hopefully bring out more of the best in our son.

As I mentioned, this will be a decision we do not take lightly. More thought and prayer and research will go into it. If we decide to move forward, I will post an update on the process. Thank you again for all the wonderful dialogue! Feel free to post more comments – my husband and I really appreciate them! It’s like having an extended group of pet-owner friends who can lend advice!

Kara

Filed Under: ADD, Asperger, Autism, Uncategorized Tagged With: , ,

Lord, hear my heart

May 30, 2012 By Leave a Comment

A friend was asking me questions about ADD/ADHD the other day. It took me back to the days before my children were diagnosed with ADHD/ADD. I remember noticing symptoms and wondering what they meant. It really concerned me that the kids couldn’t focus a lot of the time.

I have two children with ADD/ADHD.  My oldest was very hyper and hard to settle. His impulsivity caused problems on a daily basis. Both of them could hyper focus on television, books and games which I thought did not fit. I assumed that a person with ADHD would be unable to focus but what I learned is that it is more of an inconsistency of attention. At times unable to focus and other times hyper focusing. Impulsivity, hyperactivity, distractibility, restlessness, difficulty waiting for turns, easily distracted by extraneous stimuli, difficulty following instructions, difficulty completing tasks — these can all be hallmarks of the disorder.

A book I read during the process of diagnosis was Driven to Distraction by Edward M. Hallowell, M.D. and John J. Ratey, M.D. I learned so much about the process of diagnosis, symptoms, treatments and in general what ADD/ADHD was about. It answered many of my questions and gave suggestions to help a person with ADD/ADHD.

There is so much misinformation and assumptions about all hidden disabilities. Some people are very understanding and others want to judge. I suppose that is a reflection on humans in general — how we process information about others and respond to it. I have learned to not get into discussions (or excuse myself from discussions) with people who obviously don’t understand. When people judge I have learned to take it to the Lord and cry my hurt out to Him. Who understands more than Jesus how it feels to be judged, ridiculed, belittled and punished for doing the right thing. He is the only one who really understands and feels my pain and He is also the only one who can HEAL my pain.

Lord thank you for your sacrifice on the cross and thank you that you understand and feel my pain. You alone hear my heart’s cry and you are the only one who can HEAL me. I release my hurts to you. All of the times I have been judged and misunderstood. I am so grateful that at the judgement day you alone will judge me and you know my heart and my intentions. Help me to allow you to guide me and give me Your wisdom because You are the source of all wisdom. I love you with my whole heart and I want your will in my life and for my family. Amen

Twyla

Filed Under: ADHD, healing, Parenting Tagged With:

Back on Track

May 19, 2012 By 2 Comments

My 23 year old son (ADHD, ODD) retook the driving test yesterday and PASSED!!!!! All praise be to God.

I went with him to practice on Monday and he was driving fairly well. On Tuesday when he was practicing before the test he was really nervous and saying that he thought that he would fail. I realized that so many negative words have been spoken over and about him since he was a toddler that he hears them in his head even when they are not present at that particular moment.

I think our children with hidden disabilities have heard far too many negative thoughts and comments. It is actually heart breaking to hear the negative words repeated back out of their mouths and feel the defeat that follows those words. So much judgment and so little grace has been experienced in their lives. I spoke to the negativity and the fact that it does not define my son and there is so much positive that needs to be said. I followed this with some words of encouragement.

When he was actually taking the test (and waiting for the test to begin) I was praying the entire time. I could feel the pressure and I was elated when the test was over and he PASSED. I had told the Lord that if he passed I would acknowledge the Lord’s intervention on my son’s behalf. Thank you Lord for helping my son to pray for your help and trust you to answer — and answer you did in a big way.

Help me Lord to speak words of validation over my children and remember to encourage them daily. Show me Your heart for my children and help me to value them every day. Help them to reach out to you as their source because you see their heart and you value them and love them so much more than I am even capable of. Lessen the impact of the negative and critical words that are spoken over them and open the eyes of the people speaking those words to extend compassion and grace to my children.

~ Twyla

Filed Under: ADHD, Parenting Tagged With: ,

@.%. is a swear word?

May 16, 2012 By 1 Comment

@.%. = M.A. – - – as in Medical Assistance (a federal or state run program that provides benefits for children with certain types of disabilities, such as cognitive or developmental, i.e. Autism)

Yep, I swore. I must have. They fawned over my husband and I as he looked at glasses frames, needing a new pair because he’d broken his over the weekend. I’d mentioned that I was also looking for my son because we recently learned he also needed glasses. I was getting a look at what they had for kids’ frames and would come back with him later, possibly that night after school. The clerk was so helpful and happy to show me options, even bringing out more frames from her back room.

And then I did it. I said “the naughty word”. My son has M.A. and we were thinking that we’d like to also get him a pair of frames through his M.A. insurance. We figured he could use those glasses when he was playing sports or in the yard. It was like someone turned the light off. I can’t even describe for you the STARK contrast in customer service from that point on. Wow, it was like they were saying – “Please leave now. If you want to use M.A. (even though we offer it as an option) we don’t want any of your business.” I was so thrown off, confused, dumbfounded – honestly, I just didn’t get it. I went so far… I actually came back there with my son!? He tried on frames, and his senses went into overload. It was overwhelming, for many reasons, but I don’t doubt he sensed the rude attitude oozing out of the clerks.

Grrr. It took me several more days before I was able to find out why this “M.A.” was so *awful*. I straight out asked another honest and compassionate provider who explained to me why that clinic may have acted that way, albeit – they were not justified in doing so. It’s costly for them to offer these frames and service to people. That simple. Wow. I called up the head optometrist at the clinic and explained to him what happened.  How disappointing it was to be treated that way. Especially when you consider we live in a small community and we’re likely to need glasses again in the future.  We came in there trying on frames for two members of our family, we were actually planning (and told them this!) to buy a pair of nice glasses through our private insurance and out-of-pocket expense and then on top of that do the M.A. glasses, and geez… you OFFER this (insurance) program – it is a provider’s choice whether or not to offer it. How rude.

I should have gotten up at that moment and walked out of there. I would have, had I been more educated about what they were doing to me, why they were treating me that way. But I guess this time God was using my lack of knowledge at the time to keep my mouth shut until He was ready for me to calmly face the situation.

Sadly, I still gave them my business. And we’re skipping on the M.A. frames. I don’t really like that I’ve caved on all fronts. I guess you could say I took one for the team. Trying on frames is hard for Owen (7 with Autism), and we actually found one he liked there that fit him. I couldn’t put him through looking at lots of different places. BUT, I have learned from this situation, and I really do hope that somehow God will work in the hearts of the people at that clinic… in particular one very rude woman there who needs a serious reality check. Really, get over yourself lady. There’s more to life than judging a sweet little seven year old who happens to have a hard time trying on glasses frames, gets wiggly, and his mother who happens to say “the naughty word”.

*Disclaimer: I wanted to note that I have had positive experiences with some M.A. providers (dental, medical) but sadly had very negative experiences with two eye care providers in our small community.

Filed Under: ADHD, Anxiety, Autism, Conflict Tagged With: , ,

Back to the drawing board (AGAIN)

April 30, 2012 By Leave a Comment

My 23 year old son (ADHD, ODD) failed his driving test today. He passed his test a few years ago and has been driving on his own since then. Our license system is three pronged. You take a written test and get a G1 license (formerly beginner license) that allows you to drive with a licensed driver who has had their full license for more than 4 years. Then you take a driving test which gives you a G2 license which allows you to drive alone with limitations until you take another driving test to get a full G license. You also must allow 9 months between each stage, from G1 to G2 to G. You have 5 years to get your full G or you have to start the process again. He had a G2 license and was due to take his test to get a full G license but he decided to retry for his G2 license since it is easier to pass and then he would get another 5 years to get his full G license. Since he failed he is back to a G1 license and can’t drive alone any more. This is going to be quite a challenge since we live out in the country and he lives in one town, works in another town and we live in a third town that form a triangle geographically.  It would be quite expensive to take a cab and there is no public transit.

It is such a challenge to get a license in Canada and hidden disabilities make that even harder.

My 21 year old has been unable to learn to drive yet. She has her G1 and took drivers’ ed but she has visual challenges as well as her ADD and OCD. She has passed the 5 year mark so she has to reapply to get her G1 again.

I never dreamed when they were younger that driving would be so hard, that they would have such a challenge with getting their licenses, and that I would be driving them around so long. Some days it feels like they are never going to grow up.

It was a challenge to surrender this to the Lord and know He can use even this to mature them in their walk with Him (and probably me as well).

Lord, I give this situation to You to use for our good and Your kingdom and I thank you for the tough times that force growth even when it hurts. Thank you for caring enough about me and my family to challenge us to grow again in you. I love you Lord more than life and I trust You completely.

~ Twyla

Filed Under: ADHD Tagged With:

Thank you Lord for effective meds

April 14, 2012 By Leave a Comment

Sometimes it takes going without to realize how deeply grateful you can be for something. The something in particular is Jocelyn’s ADD meds. She is back on them on a daily basis and I could dance with joy. I can hardly believe how much she has been focused and how much she has accomplished. It is simply lovely and amazing. In retrospect I wonder if I should have resisted the meds as long as I did when she was little. She started meds when she was 11 and they have been such a help. I didn’t trust the safety of them and held out as long as she could somewhat cope although coping is sometimes all she could manage. At puberty it was blatantly obvious how much she needed them and they really helped.

The last time she was off her meds was when she was switching meds to try a different one and she had to go off for three days in between. On the second day she went into the store she works at to do some shopping and she was skipping up and down the aisles saying Ohhhhh loooook! Her coworkers checked what department she would be working in the next day so they could come watch. She vacillated from sleeping to hyper in an amusing fashion but I was glad when she started the new med.

Thank you Lord for meds that work. I am deeply grateful all over again.

~ Twyla

Filed Under: ADHD, Medication Tagged With: ,

My Tool Belt

April 13, 2012 By Leave a Comment

Over the years I’ve amassed quite the collection of tools. You just can’t get every job done with a Phillips or flat head screwdriver. Sometimes I have to get out my hammer. I love my level – probably one of my favorite tools. There are tools I’ve only used once, thus far, but had to have to get the job done: an electrical tester and caulk scraper. Then there’s the tool you won’t find in a kit, but often “saves the day” – Duct tape. ;o)

But I have another tool belt. Sometimes I use the tools in this belt almost every day for a season, and then find I don’t use them for what seems like years. I should almost create a visual model of this tool belt, so I don’t forget about all the handy tools I have available to me. Instead I store them in my memory bank and every once in awhile I pull one out and think to myself: “That worked like a charm! Why didn’t I think to try that sooner?!”

So what are the tools in this belt? Social Stories, Visual Schedules, Comic Strip Stories, PECS, Sensory Stimulators or “Calmers”, and more. So much more. See what I mean about needing a visual model of the tools I know? I can’t think of them all at this moment but I have used so many over the years.

Sometimes they are complex and require days to prepare, like the social story I wrote for our trip to Disney World. All the time and effort was worth it, our trip went very smoothly for Owen. He knew what to expect because of the story. Taking his shoes off at the airport’s TSA checkpoint was no big deal. Not knowing ahead of time exactly what color our rental vehicle would be, not a problem.

I often underestimate the value of a little sticky note. Here’s a very basic example of how I used one years ago. I was telling a therapist how difficult it was to take Owen with me when I had a few errands to do. She asked if I write myself a list when I go shopping? I answered, “Of course I do, it helps me make sense of what all needs to be accomplished and to make a plan for completing my errands with the least amount of back-tracking.” Then she asked, “Wouldn’t it make sense, then, that a list might help Owen?” So I tried it the next time I did errands. 

WOW!  It worked!  He followed along with my list of places we had to go and during our longest errand he followed along with each item we had to look at, in the store.

I recently pulled this tool from my belt, and it once again worked like a charm! Owen always has a hard time with the changing of seasons, or rather, the change of appropriate clothes for the weather. In the Midwest, we can have summer like weather and be back to winter temps, all during the Spring. This creates arguments when getting ready for school. Owen had gone through a week of wearing shorts to school during temps that were too chilly for it, because the battle was just not worth it. I figured he would learn his lesson eventually, but he just kept choosing shorts on chilly days. Then, I got out a sticky note and wrote down my requirement for shorts.

I showed Owen the note, stuck it on my printer and now each morning we check the weather together on my computer. If the high for the day is 55 degrees or higher, Owen gets to wear shorts. And when it’s 54 degrees or lower, Owen knows the “rule”. It’s right there in front of him, in “black and white” – it is concrete. And I am not the bad guy. That is just the requirement. Since I stuck that little note there and with our daily reference to it, there have been no more fights about having to wear pants on chilly days!

Yay, the tool belt comes to the rescue yet again!

- Handywoman Kara

Filed Under: ADHD, Autism, Communication 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: , ,
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