Life with ADD

As I have been working on a number of blog posts (some posted and some for future posting), I found myself referencing the impact of ADD on S's life.  Hmmm... that might be something I could write about.  Guess what?  You are reading it!

As written in yesterday's post, S was diagnosed officially in the 4th grade.  He exhibited symptoms prior to that.  Because of his CP, our family and the school had made accommodations and adaptations for him that helped him function with his ADD.  It was when it was impacting his quality of life that we knew we had to do something else for him.  

This post isn't about the pros/cons of medication.  There are very strong views from both sides. We had to look at our son as an individual and do what was best for him.  For him, that path was medication, and it has been beneficial for him.  If it weren't, we wouldn't have him on it. Enough said...

What is it like for a child who has ADD (right-brained) to live in a household where everyone else functions left-brained?  What is it like for left-brained parents to parent and guide an extremely bright child who functions right-brained?  

We have done a lot of reading on the topic.  We don't want to "change" S.  We love the person he is; however, I wouldn't mind if he cleaned his room or could find his things occasionally.  We have worked with S through elementary and middle school to get his work done, to be aware of distractions, to organize himself, etc.  Some of our techniques were helpful.  Others may have been just as effective if we were trying to herd cats.  We would get frustrated.  He would get frustrated. Back to more reading.

Once S was in high school, we spent a lot of time talking to him about the future and how he is going to be responsible for himself.  What does that mean?  What tasks will he need to be able to do? [These will be addressed in posts starting next week.]

I was still reading and gathering information, talking to S, asking him how we can help him, etc. This past year was an epiphany for me, my husband, and J as I read "Secrets of the ADHD Brain".  One of the sections is titled, "Don't Turn ADHDers into Neurotypicals".  Oh. My. Word. The author was talking to us.  We, the three of us, realized that is exactly what we were trying to do.  That was not our intent.  Reading that article was a turning point in how we addressed S and his ADD.  

As a right-brained person, he does have to function in a world that is mostly left-brained.  That does not mean he has to function as a left-brained person.  He needs to develop strategies to help him get things done in his life that everyone needs to do - get schoolwork done, show up to work on time, get work tasks done, pay bills, meet various deadlines.  His strategies don't have to be my strategies, and my strategies don't have to be his.  My husband's strategies don't have to be his.  J's strategies don't have to be S's strategies.  His strategies need to be just that - his.

Ideally, conversations regarding organization or meeting deadlines or whatever now sound like this:  

Mom/dad:  Here is what I would do to accomplish _________.  This works for me.  Just because that works for me doesn't mean it will work for anyone else in this house.  What do you think would work for you?

S:  (Proceeds to tell me what part of my idea might work for him or why it wouldn't work.  Tells me what he would like to try. May or may not stray from the topic of conversation to share whatever tidbit of information is on his mind.)

Mom/dad:  Let's try that for a little bit and see how it works.
Again, the above script is an "ideal" conversation. They aren't always this nice and neat.  

As S told my husband one time, "It doesn't need to make sense to you." No truer words have ever been spoken.  It doesn't need to make sense to us.  It needs to make sense to the person who is doing it.  It needs to make sense to S.  If it helps him accomplish _____, then it was a successful idea.

Whew!  I will just be hanging out on the couch with chocolate.  That makes sense to me.

ADD Diagnosis

We have a child who has ADD.  It is not something that is quickly diagnosed.  It is a process.  For us, it was years in the making.

Here are snippets of conversations we have had at IEP meetings through the years.

*Pre-K:  S has a hard time staying on task and paying attention.

Team Response:  Everything is new to him, and he is busy exploring.

*K:  S has a hard time staying on task and paying attention.

Team Response:  This is his first year with some academics, and he is building his language.  Let's wait until we see what all of his initial testing results show.

Psychiatrist who performed PsychoEducational testing:  S had a very difficult time staying on task.  He wouldn't do what I asked during testing.  He was easily distracted during the test and during my observations in the classroom.

Psychiatrist's report:  S repeatedly asked for the volume on the tape recorder to be turned down.  He kept saying it was too loud and hurt his years.

OT's response to Psychiatrist:  Of course, he wasn't going to pay attention.  He was uncomfortable.  He told you that.  As far as not paying attention in class, he's trying hard not to fall off his chair which is an inappropriate seat for him.  Let's get him a new seat that will position him correctly.

*First Grade:  S has a hard time staying on task and paying attention.

Team Response:  This was his first full year of academics.  It's harder for kids to adjust to that.  He also had new technology which could be causing the distractions.

*Second Grade:  S has a hard time staying on task and paying attention.

Team Response:  He is new to the school since you just moved. He's adjusting to all of the changes

Parents' Thoughts:  It doesn't matter what you think because we have had it with this school system.  He's going to be homeschooled until we move.

*Third Grade:  S has a hard time staying on task and paying attention.

Mom's Response (dad was gone):  Every year I hear the same things at IEP meetings.  He doesn't pay attention and can't stay on task.  Should I take him to the doctor and talk to him about doing an ADD evaluation?

Team's Response:  No, we aren't saying that (and they hadn't).  It's a new school (we had moved again).  Academics are more challenging.

*Fourth Grade Report Card - First Quarter:  S has a hard time staying on task and paying attention.  He is easily distracted.

*At this point, our home life after school was miserable.  S was tired and couldn't focus on his homework.  He would get upset.  I would get upset.  J would get upset.  Dad was still in the Army and was traveling a lot.  I finally told my husband that we couldn't live like that anymore.

It was time to go to the doctor and talk about attention issues.  S was very concerned about this.  We told him that he could have a medical condition that made it difficult for him to pay attention, and we were going to find out if that was the case.

1.  We met with the Pediatrician and addressed our concerns.  He gave us paperwork to fill out, and we asked S's teachers to fill it out.  It was very interesting.  His classroom teacher was the only one who saw the lack of attention.  Of course, we saw it at home also.  We asked the Pediatrician if we could see a Neurologist due to S's CP just to cover all tracks.

2.  The appointment with the Pediatric Neurologist was wonderful!  He talked us through the diagnosis process.  Due to S's CP, the testing and accommodations steps had already been taken. As the doctor described a typical day in the life of a child who has ADD, we had to stop and ask him if he lived in our house.  This was S!  

3.  We agreed to try S on medication and then re-evaluate to see how it was working.  It changed everything for him.  

*His grades came up.  He went from a C to an A in Math.  He was 1 of 10 4th graders to get an A in Math for that quarter at school.  

*He was completing his school work.  

*We could play games at our house!  He had been unable to take a turn in UNO without numerous prompts.  

*S could get dressed without getting distracted during the process.  

*That 4th grade report card was the last time he received an N for Needs Improvement on Paying attention/Staying on Task.  

As we have told S, ADD is a medical condition.  It is not an excuse for inappropriate behavior or just choosing not to do something.  We have worked hard to help him function with ADD.  We have learned to respect that he will do things differently than we will.  His brain works very differently than my list making brain.  That's okay.  He is very creative and thinks outside of the box.  

I will be on the couch with chocolate as S proceeds to tell me everything that is running through his mind....

Random 5 on Friday

1.  My youngest son flew to Minnesota for his annual “alone” trip to visit family (his brother will go in a few weeks).  He always has a great time, but he will be tired when he gets home.  My husband is a little jealous because J gets to attend a Twins game while he is there.  

2.  My church family is awesome!  We have been hosting VBS this past week, and it is so nice to see everyone pull together and pour everything they have into teaching these children about God.  I love hearing the parents’ comments at the end of each evening!  I’m looking forward to our closing service on Sunday morning.

3.  My husband is amazing!  I head up Registration for VBS, but I couldn’t do it without his support and technical expertise.  Every year he has to give me a quick refresher in Excel spreadsheets. He is there to do whatever needs to be done.  His favorite quote is from “Robots” - “See a need, fill a need.”

4.  Just found out Wednesday night that longtime Army friends of our family might be coming to visit next weekend!  Very exciting!  We have some scheduling things we have to work out, but I hope it works.  Our families have a great time together, and it might get a little loud. There may/may not be a wild game of Pictionary played in which people may/may not laugh at my drawings.

5.  After this crazy, busy week, we are looking forward to hanging out with S.  Think we might head up to Richmond to visit the Holocaust Museum and do a self-guided tour of VCU.

Linking up with:

                                                       http://www.thepebblepond.com/

Wait until things get back to normal…

How often in life do we say the words, “Wait until things get back to normal.  Then we can _____.”  I have said those words quite often throughout my husband’s Army career, but I feel like I have said that phrase a lot while living in Virginia.

We moved to Virginia right before Christmas in 2005.  Once we were settled in the beginning of January 2006, my husband went away to school for 4 months.  Our normal was that dad wasn’t home.  That’s not how we want normal, so we always said, “Once dad is home, then we can ____.”

Things were “normal” for a little while here.  When my husband switched offices, he started traveling a lot.  He was gone half of each month.  He mostly traveled stateside, but he did make more trips than he wanted to overseas during that time.  Again, we didn’t want our normal to be three of us at home and dad gone most of the time.

“Maybe when he retires things will get back to normal.”  Things were better the first year he retired. He was still traveling but not as much.  

Then he switched jobs and started traveling again - a lot of traveling.  Our youngest son who is a gymnast had also switched gyms around this time period.  His new gym is 21 miles from our house, and he practices 4 days/week (5 days/week in the summer).  The catch was his school was 14 miles the opposite direction from our house, and he needed to be picked up from school on practice days in order to get his homework done and make it to practice on time.  We developed a new normal for our house which meant a lot of road time for mom and dad.  

It was during this time period that I realized “what if this is normal for us”?  There would be no waiting until things get back to normal.  This is it.  

Shortly after we came to this realization and embraced this new normal for our house, I broke my arm in a car accident.  It was a bad break which required surgery and a lot of hardware. It was an 8 month recovery.  I was unable to drive for 2 months.  I couldn’t dress myself.  This was not our normal, but a new normal was established quickly.  It had my husband doing a lot of stuff; his work was very accommodating and didn’t require him to travel until I was ready to take care of myself.  

Once I was cleared to drive again, I was so happy to be able to make that daily practice drive with my son.  I was thrilled to be able to drive S to his therapeutic riding lesson (31 miles away).  I learned to appreciate the fact that I had the ability to do these things rather than view them as chores. It’s all perspective!

Normal at our house isn’t normal at other homes.  Each household has their own “normal”.  We aren’t bored at our house.  We are too busy to be bored.  We get a lot of one-on-one time with our teenage sons on our drives.  We talk.  Sometimes we listen to the radio.  Sometimes they play on their phones.  We appreciate down time in our home.  

The other week I logged 204 miles driving to “normal” activities in two days.  It doesn’t leave me with a lot of free time, so I do appreciate being on the couch with chocolate.

A Few of Our Favorite Things...

Favorite items for day-to-day life

ADLs are "activities for daily living".  They are things the majority of us do in our everyday lives and don't think about.  For someone with a disability, the ability to perform ADLs can be difficult.  For some, the ability to perform or not perform the ADLs will determine their living arrangements - independent living, care provider, group home, care facility, etc.

Our goal for S is for him to live independently.  This is his desire also.  We have always had a great team working with him whose goals were the same as our goals - make S functional so he can live on his own.

Because of his CP, he needs to perform some ADLs differently than we do.  We try to keep things as "normal" as possible for him.  He doesn't want to stick out, and anything that is "therapeutic" costs more.  

Here are things that we have found to be very beneficial for S in the various aspects of his life:

1.  Clothing/Dressing:

Hickies:  J found these online, and they have been wonderful.  S has never learned to tie shoes due to the fine motor complexities and the gross motor issues of getting his body in the right position.  Hickies allow S to put on his own shoes, so we don't have to tie his shoes for him.  Trust me, it was a lifesaver for us.  We had to schedule our life activities around when he was getting his shoes on, so we could be available to tie his shoes.  Bigger factor is that S doesn't have to ask people to tie his shoes for him.

Buckle-down Seatbelt Belt:  Again, J to the rescue!  S has often had pants that have the adjustable tabs or elastic waist.  This style of clothing is more and more difficult to find as he has become an older teen, and we have tried to find clothing that looks age appropriate. When he had to get jeans that no longer had the tabs, my husband and I were racking our brains about what to do for a belt.  S would probably be able to use a typical belt, but it would take him a LONG time to work it.  J told us that he had seen kids at school with belts that had a seatbelt buckle.  He was under quick instructions to look them up to see where we could get them.  We were so excited when we found they had them at the mall.  We have never been so excited to get to the mall!  They work wonderfully.  Again, S doesn't have to ask for help with getting dressed.

2.  Personal Care:

This has been an area that S has not really had any issues with; however, we have found things that make his life a little easier.

Norwex face/body cloths:  S has had some struggles with acne and has used special soaps which were expensive and bleached my towels.  I read some reviews about the Norwex face cloths and people not needing to use their face soaps anymore.  I figured it was worth a try. Love them!  He uses the cloth with water and that's it.  He hasn't had any issues with acne. The cost of the cloth will more than pay for itself many times over.  It also becomes  a one step process for him instead of multiple steps and manipulating other items.

Sonicare toothbrush:  J's orthodontist recommended this when he had his braces put on.  It is a great toothbrush for S.  It cleans his teeth well.  

Reach Access Flosser:  Because of his fine motor issues, this has been a good flossing option for S.  

3.  Cooking:

Toaster oven: S wants the ability to cook for himself.  Using a traditional oven isn't practical for him.  This provides him with a great alternative to cook that is much safer.  He can cook a variety of things in his toaster oven.

Ove Gloves:  S loves these for his toaster oven!  Oven mitts are difficult for him to put on, and he feels unsure of himself when he is wearing these.  With the Ove Gloves, he is very comfortable working with the toaster oven and hot pans.  If he is comfortable, he is relaxed.  If he is relaxed, his tone doesn't kick in.  If his tone doesn't kick in, he can move much better.

Rubbermaid containers:  These are S's best tool in the kitchen.  It allows him to carry his food without spilling as he walks (remember he's walking with crutches).

4.  Cleaning:

Thirty-One Large Utility Tote-Camo pattern:  This is a great bag for S to carry his laundry to and from the laundry room.  It is very functional, and the amount of clothing it holds is a manageable amount for him to carry along with being a nice sized load of laundry.  (Yes, he has to do his own laundry.)

Laundry Pods:  Easier to handle than a bottle of detergent

Norwex:  S is responsible for cleaning one of the bathrooms in the house.  

He uses the Enviro cleaning cloth, toilet cleaner, and the mop.  He likes not having to touch the chemicals in other cleaners.  Just the ease of needing the cleaning tool and water makes the job much easier for him.

5.  Medical:

Daily pill cases:  S has 2 large pill cases.  We use the large cases because they are easier for him to manipulate, and some of his pills are large in size.  He has a morning case that stays in his bedroom so he can take his pills when he wakes up.  He has an afternoon case that sits next to the computer because that is typically where he is at when it is time to take his afternoon pills.

Stretching strap:  S needs to stretch daily (especially since he's no longer going to PT).  He's working on doing that.  His stretching strap helps him to be positioned better and get a good stretch.  Stretching is vital to his overall functioning ability.

6.  Technology Tools:

Google Calendar:  We realized the benefits of Google calendar this past school year for him. He loves being able to look at the calendar to see what is scheduled for the day and week. We also used the Task functions for his schoolwork, so he could check his work off as he finished it.  It definitely gave him a feeling of accomplishment, and he was in control of his work.  He also uses the calendar to remind him when he has to take his afternoon pill, eat lunch, contact the doctor for medication refills.

iphone:  S uses his iphone in a number of different ways.  He sets alarms to wake up or remind him when he needs to do something (helpful with his ADD).  He uses Siri for texting, and speech recognition software for taking notes.

iPad:  Useful for so many different things.   S can use it for school.  He can use it to organize his daily life.  He can use it for his online banking.  He uses the "Checkbook - Spending, Income, Cashflow, and Account Tracker" app to keep track of his checkbook (he needs to get better about keeping this current).  He uses the Kindle app.  He uses the Bible app and the Lutheran Hour app.  He has apps for Daily devotions.  

7.  His bag:

The one thing he uses every day from morning until bedtime is his personal bag.  He uses it to help carry things (wallet, gum, books, papers, etc).  His pediatrician and PT would often ask him how he was going to carry things.  He realizes the value and helpfulness of his bag.  We have tried different bags to see what would be best.  Some bags are too big.  Some get in the way of his crutches.  Cinch bags are too much of a hassle for him to take on and off.  He needs something that he can access from the front of his body without having to remove the bag and/or his crutches.  

Again, we had to use some out of the box thinking to find the right bag for him.  We needed something age appropriate that would stand up to a lot of use.  We found a bag at Barnes and Noble.  It is not as large as a messenger bag, so it doesn't bump his crutches.  It has multiple compartments, so he can organize himself which is not one of his strong suits.  It also holds his iPad which is nice.He has popped one of the zippers on it.  That's only because he likes to stick all of his really important things in the small pocket which is good for his phone and wallet - not his phone, wallet, Bible, book, etc.  We will get that fixed.  

Getting S to this point has been years in the making.  I think I will relax for a little bit on the couch with chocolate.

Linking up with:

http://www.weirdunsocializedhomeschoolers.com/

Weekly Wrap Up (We already have a curriculum change.)

What a busy week we have had at our house!  I guess it has been a normal week then.  They all seem to be crazy - some more than others.

Curriculum change:

For starters, we have already made a curriculum change for S’s senior year.  After looking at other’s posts, I looked up the Brave Writer (http://www.bravewriter.com/) curriculum. Writing is an area that I want to make sure S has a solid foundation.  I liked the idea of some of the online course options, so we decided that he would take one or two online classes.  They line up perfectly with work I had planned and our timeline.  Prior to the online courses, he is going to work through the "Help for High School" course to make sure he is on track with the style of this program. He worked on Module 1 this week.

VBS Prep:

We have VBS at our church next week.  Our family heads up Registration.  This is our sixth year of doing it.  The previous two years I have said I was not doing it any more.  I have been saying it a lot this year.  Think I really mean it this time.  It’s a lot of time and work on our part.  This week I have sent 29 emails out regarding various Registration issues and received 29 emails regarding VBS issues.  Everyone in our house helps, but I think it is time to pass the baton.  

Family:

The boys had three appointments this week.  

1.  J’s hip had been bothering him, so he went to see the chiropractor.  It didn’t take very long with her, and he felt much better.  He often wants to put off going to see her, but he always feels so much better afterwards.

2.  S had a dentist appointment for a cleaning.  He has been complaining about his 10:00 appointment and how ridiculous it was to have a morning appointment.  I told him he could make his own appointment next time.  The other day he realized he had picked the 10:00 time slot because Rachel Ray is on then, and there are TVs at the dental chairs.  Ha!  Not my fault!

3.  J had a physical appointment.  We only realized he needed it because he needed medication refilled.  He has attended gymnastics camp the previous 5 years, so he always went in for a camp physical.  This year he decided not to go to camp, so he didn’t go in for a physical.

Both boys have volunteered this past week.  S put in 4 hours at the Casemate Museum.  J volunteered 6 hours with a family friend at her stables.  

J had 18 hours of gymnastics practice and the end of the year party.

J is flying to Minnesota next week to spend time with family.  Other than a niece who lives in Tennessee, everyone else lives in Minnesota.  It is important to us that our boys get alone time with grandparents and other family members.  They have been taking their individual trips for a number of years.  It has been good for them.  This is J’s first year making connections as an unaccompanied minor.  He has been traveling his whole life, so he’s a pro.  We are trying to finalize trip plans for him.

The highlight of this week was celebrating my 26th anniversary!  I can’t believe I am old enough to have been married 26 years.  We did marry young (19 and 20), but it is still hard to comprehend.  It’s been quite a journey with my husband, and I can’t imagine it any other way.

Because of J’s practice schedule, our family went out to eat the day before our anniversary so we could all celebrate together.  On the actual day of our anniversary, my husband and I were like two ships passing in the night.  Between dropping off and picking up J at practice and S at Youth Group, we did manage to meet up for a quick supper.

I will be resting on the couch with chocolate.

Linking up with:

Transitioning with DARS Part 3

After playing phone tag with the Assistive Technology coordinator, S had his AT assessment scheduled.  We thought it was going to be 30 min-1 hr. long.  It ended up being 2 ½ hours long, and S decided that his dad and I could just wait in the waiting room during the assessment.  It was boring for us (picture any waiting room of a government funded office), but it was him being independent. Yeah!

When it was done, we were called back into the room to get an overview of what they had covered. The coordinator was impressed with how much work we have done with him at home.  

They talked about his needs at college:

1.   Note taking:  Using a Livescribe pen, Audio Note on an iPad, getting notes from other students

2.   Power wheelchair vs. manual wheelchair:  S isn’t excited about a power chair because he thinks it will cause him to become lax in getting himself around.  It was suggested that we look at assist wheels which would give him extra propulsion on a manual chair.

3.   Computer needs:  iPad, laptop, desktop.  He will probably use an iPad in class and have a desktop in his room.  At home, he primarily uses a desktop.  He does use the iPad for different tasks.

4.  The coordinator talked about other apps that would be beneficial, and he emailed the links to S.

Our concern with the Livescribe pen is that S will distract himself so much with getting it set up that he will forget to record the lecture and take notes.  He has tried it at home and did well; however, it was a new item.  Will that continue once the novelty is worn off?  Will he be so inclined when it is a class he doesn’t like but is required to take?

We like the idea about the chair.  We will check into that.  We have a great representative/salesman we work with for his wheelchair and other medical equipment.

We went out and bought a new iPad so he can practice with it this next year.  We had the first iPad which doesn’t support some of the tools we would want him to use.

His senior year will be about him finishing up the necessary classes to graduate and practicing techniques necessary to help him in college (note taking, scheduling, putting things on his calendar so they are beneficial to him).

It was a great meeting, and S was quite excited to share all of the information with us after the fact.  It is fun to see him taking on this responsibility for his transition.

Since this transition thing is going well, you know where to find me...on the couch with chocolate.