Queen of the Distracted

Imagine life in a house with 6 kids - now imagine if 5 of those kids and their father have ADD/ADHD (Attention Deficit Hyperactivity Disorder) - that is our house! Welcome to an inside view of my life and our home dominated by ADHD... THERE IS NEVER A DULL MOMENT!

Ladies and Gentlemen! Boys and Girls!

"Ladies and Gentlemen, Boys and Girls!"

Those were our oldest daughter Rachel's first words, from the time she was a toddler she would belt them out proudly standing on the arm of the couch. At the time we had no idea what ADHD was or that it would play such a central roll in our lives.

Since then we have learned a lot, not the least of which is how many individuals and families suffer in silence. We have experienced first hand how misunderstood and misrepresented a disorder can be.

As a family we decided to take action - to risk embarrassment and labeling to get this important message out to the world. Come join our family, share in our lives, and see ADD/ADHD as we see it...
A gift with a heavy price tag.

WELCOME to life in the ADD/ADHD House!

Tuesday, September 24, 2013

Successful IEPs: Plan Your Work & Work Your Plan

My fearless blue caped superhero
I swear to you that our youngest daughter was born with absolutely no fear whatsoever. More than once the only thing that saved her was that little voice that whispers to me, her mother, "something's very wrong." I remember once taking her and her siblings to a wonderful park in our community that had the tallest slide I think I have ever seen. Scared me to death. I made it completely clear that none of my kids were supposed to get near it. To my fearless toddler my warning meant nothing and before I could grab her she was on her way up the staggered open sided platforms that led to the top of the slide.

I remember the first SST meeting I sat in for that same daughter. I felt just about the same way as I did watching her on those slide platforms. Intimidated, scared to death, fearful would be all be understatements to describe my feelings in those first meetings with the school. I had realized probably 2 years earlier that our daughter had learning disabilities far beyond the scope of her ADHD. For 2 years we'd been trying to get the school to listen and test her for disabilities. We didn't know how to make that happen and the school was not volunteering any help. Finally frustration led to my own research, friendships, information, the beginnings of understanding about student and parent rights and services. I stopped waiting for the school to help and started pushing for the school to help.

To be honest that first IEP was just a bare bones beginning but it was a beginning. It led to more decisions, more testing, more accommodations, and services. It opened the door to getting her help with multiple issues. For example, no one could understand a word our daughter said but for some strange twisted red-tape reason she didn't qualify for speech therapy until that initial IEP was in place for her Auditory Phonemic Processing Disorder. Then she suddenly qualified for speech and it was officially added to her services and goals.

A switch in schools to a charter home school program, more testing ended in a better understanding of
the extent of her disabilities, new IEP meetings, a revision of services, new goals, more work, research, more understanding. We were in the thick of it. Climbing platforms, adjusting our position, pulling ourselves up one level at a time.

ADHD, Dyslexia, Dyspraxia, Dyscalculia, Dysgraphia, Central Auditory Processing Disorder, Sensory Processing Disorder, not crossing the mid-line, problems with visual tracking the list got longer and longer. All led to speech, reading, writing, math services, occupational therapy. Hours and hours of therapy. Hours and hours of meetings about testing and services.  Hours and hours of work, for her, for me, for the whole family. We kept climbing, it was like we were almost to the top of those platforms and the slide back down to solid ground. That was the hardest and scariest time. Complicated to juggle goals and therapies, hard to do the work needed to make a difference for her, and to be honest difficult feeling like we were never going to get on top of things. Marking progress was arduous and painful. it often seemed like we were discussing the same goals and making no progress on them at all.

We just had our most recent IEP meeting last Friday with the intervention teacher that we've worked closely with since she returned to public school as a Freshman in High School.  He asked us if we wanted a copy of our parents rights. He was about to print them out for us when my husband and I both shouted, "NO!" we joked about how we might singularly be responsible for the death of a rain forest from all the copies of parental rights we already had tucked away in our files at home.

I realized something in that meeting as we were going through goals and checking things off that had been accomplished the largest of which was her passing both the English and Math sections of the California High School Exit Exam on her first try this last year. I realized that several years ago we started seeing real progress in her skills and began the process of eliminating goals and services as needed. More goals met and services dropped each year. Somewhere in the middle of the process we had hit the top platform and started down the slide and I hadn't even realized it. It was an exhilarating feeling this year as we dropped her one period intervention class and replaced it with a once a week meeting with the intervention teacher to make sure she was doing well in all her classes.

on a HS drama trip
She graduates next year, the more I thought about it the more I realized that our experience with her IEP is exactly how it should be. It is a testament of how the system should work. We started with the simple recognition that there was a problem, as we progressed we better and better defined that problem and set up goals and services to meet her needs. We planned our work and worked our plan until those services, coping mechanisms, therapies started to pay off, things started clicking into place. As she progressed, we met annually, more frequently when needed, we adjusted to meet her needs. For a longtime it seemed we only added and then slowly but surely goals were met and services started falling off. First to go was OT, then speech and most recently the last of her pull out services for Math and English.

She went from terribly behind to caught up to flourishing. This last year she score advanced in English/Language Art on state testing. My daughter diagnosed first with Auditory Phonemic Processing Disorder, then Dyslexia, Dypraxia, Central Language Processing Disorder scored advanced in English.

Interventions, modifications, accommodations,  pull out services, therapies, all seemed so intimidating and overwhelming when I first started this process. I didn't see how, couldn't see how, all this was going to come together for her benefit but I became a mother bear about it. I researched it, the disorders, the tests, the therapies, the modifications and services that would benefit her. I pushed, pushed the school, pushed the process, pushed myself, pushed her. And now, now we are enjoying the excitement, the feeling of freedom and thrill of conquering the slide.

I'm not going to lie, when my then toddler daughter got down the slide safely she wanted to do it again. I was still waiting for my heart to start beating again while I thanked those that helped her get safely down. I feel a little the same about this IEP meeting - we left feeling triumphant, I was wanting to thank the long list of people that have helped her get safely up to the top so she could enjoy the ride back down.

When I meet and talk to parents that are just starting on this journey the first thing I tell them is learn, learn everything you can and don't be afraid to dig until you really know and understand what is going on with your child. I tell them get your services in place as soon as possible, whether that is a 504 or IEP. Plan you work and work your plan. I tell them keep at it even when you are tired and discouraged and it seems like you aren't making any progress because I know from experience that if you do those things the pay off is big. It's big and wonderful and exhilarating.

Some things in life look overwhelming and intimidating the first time you look at them. That slide, the tallest slide that I'd ever seen was one of those things. I wonder what I would think about it if I saw it again today. Experience has a way of changing how we look at things. I wonder, if like the IEP/504 process, I would look at that slide with different eyes, knowing eyes.  I think I would.

Sunday, September 15, 2013

Finding Patience in the ADHD House - Just Keep Swimming

My husband, the Distracted King, thought I should entitle this post Just Keep Swimming, after Dory in
Finding Nemo. At first I wasn't sure about that, though, the more I thought about the patience it takes to raise a house full of ADHDers I did think I can completely relate to Dory. Sometimes, most times, life in my house is overwhelming and the answer really is, "just keep swimming."

I was recently asked how I have the patience to deal with so many ADHDers under one roof. The answer is complicated. It was certainly too complicated for the 140 characters at a time that twitter provides. The answer is, I am not always patient, ask my husband and kids. They will
certainly attest to it, but, I am mostly patient because I have learned the value of it. How did I learn, by being impatient and figuring out it made things worse for both them and me. I look at the goal of parenting as a very long term far reaching goal.

I want my kids to be healthy, to love who they are and embrace it, to be good-hearted people who want to make a positive change in the world.  I want them to have to skills to do that. I don't want to crush who they are, their spirit, I want to empower them to live up to their strengths and conquer their weaknesses. Conquering doesn't mean getting rid of, by the way, I believe it means learning to work with, around, over whatever it takes to deal with them so that their weaknesses don't keep them from using their strengths. Yes, do I want to them to learn social skills, maybe not so many that they completely repress everything that pops into their mind to say or do, but enough to be able to choose when to filter their thoughts and actions to best serve the needs of the situation.

I believe that the daily goal of parenting should be to keep the end goal in mind - do what will help them not just today but down the road. Keeping the goal in mind is what changed the way I parent day to day. So, these are the things that I try to keep in mind day to day to make that work.

Unconditional Love 

People define love in so many ways but when I  parent I have to start with unconditional love - I love regardless. Regardless of inabilities, weaknesses, frailties. I love when they are successful and when they are not. I love them just as much when they make us proud as when they embarrass us. And most importantly I make sure that THEY know that I love them regardless. That I love them, love them absolutely, completely separate and independent of their actions.

Accept your child for where they are at now, today. 

It is easy to get caught up in what we think that our kids should be able to do at certain ages. Our expectation of where they should be can't and shouldn't cloud our acceptance and acknowledgement of where they are now. To help our children make progress in any area of life I have found I have to know and accept where they really are right now. Being honest with where that is changes perspective and makes progress really possible.

For example, our daughter with dyslexia, dysgraphia, dyspraxia, and ADHD got advanced on her state testing this last year in English/Language Arts. A far cry from when she was in the 5th grade reading at a first/second grade level. Her progress started when we were able to be honest about where she really was, then we could help her. She still has all the same disorders but she has learned, is still learning, how to overcome them. It goes the same for any habit, any social skill, any weakness. Be honest and accept where they are today so that you can work on changing tomorrow.

Redefine normal as normal for us

This goes hand in hand with being honest about where things really are.  Abandon "normal" and embrace who they are. It is easy to get caught up in what society says is normal and expect that for our own lives. What follows are feeling of frustration and failure because we aren't experiencing "normal."

Here is our normal. It is normal for us to take at least 2 hours to get ready to leave the house to go somewhere. It is normal for us to get over stimulated in crowds and need a break. It is normal for our house to be driven by creativity which spills out in everything we do and are. It is normal for us to get easily frustrated and meltdown. It is normal for us to be on or off, completely engaged and passionate or totally uninterested. It is normal for us to forget, even seconds after being reminded. It is normal for change, even the slightest change, even a good change to rock the world and make it momentarily unmanageable. It is normal for us to be captured by an idea and need to record it so we don't lose its brilliance forever. It is normal to be distracted by anything and everything that is more appealing to think about or do. It is normal for the impulse to act to be way stronger than the impulse to think about the consequences of that action.

My advice, find and respect each individual's normals. We have redefined normal to suit what normal is for us as individuals and our family.

Accepting what normal is for us had not meant that we just excuse away bad behavior. What it means is teaching our kids how to act appropriately in different situations. It means that we can acknowledge our own normal and set it aside when the circumstances demand.

Adjust your expectation

Once we accept where our child is, we have accepted our new normal, then we start adjusting our expectations. I start with the reality of where they are at. If it takes several hours for them to get ready in the morning I am not going to get that down to 10 minutes over night. I can, and have, slowly adjusted behavior. So maybe now the same child can work the coping mechanisms we have put in place together and get ready in an hour not three. If you start every days homework thinking this should only take a half an hour and 3 hours later you are still doing homework you are going to be frustrated and mad all the time. If you start saying this is going to take 3 hours and it only takes two you are going to be happy and excited. There are inherent traits of ADHD, ASD, learning disabilities, anxiety, SPD, depression, that will quite frankly be long arduous battles to gain the coping skills that will last and be used the rest of your child's life.

Pick your battles

Some things aren't as important as we think they are - we all have standards that need to be kept and reenforced but there are a lot of things that we can compromise on and work out to the benefit of ourselves and our kids. Home shouldn't be a minefield of expectations. Home should be a place to learn, understand, grow, and explore. It should be a place where you feel safe and understood. A place where it is okay to make mistakes, a place where we are given the opportunity to learn from them. As parents we have had to pick our battles keeping the long range goals in mind. If we take up every battle and nit pick the little things we will lose both the battle and the war.

Respect the way their brain works and create coping mechanism to meet your needs and theirs

writing homework in planner - not enough
I truly believe one of the greatest thing we can do for our children is figure out what their experience is, understand it, empathize with it, learn about it. Then help them learn to recognize and understand their experience so that they can communicate with you and others what that is. When we figure that out that we can begin to develop coping mechanisms, tricks, reminders, stopgaps that help manage the long list of traits and struggles that they are having. They will need those coping mechanisms and use them all their lives. The trick is they have to work for them, with them and their personality. It's easy as a parent to try and fix something by throwing what would work for us at our kids. Sometimes that may work but when it doesn't we need to look to our kids to voice possible solutions. Any system that we create as a coping mechanism is more effective with their buy in. It also trains them to problem solve for themselves, to recognize when they are struggling with something and seek effective solutions (long range parenting mixed with the here and now). Ultimately, it has to work for them, they have to use it, and we want them to be able to use it on their own when we aren't there to make it happen.

This is a long process of hits and misses. I have to remind myself to be patient as we always seem to figure out more systems that don't work than systems that do.

Discipline with learning in mind

In our home, sometimes, in fact I would say most of the time, our discipline doesn't look like discipline at all. It looks like teaching and learning. That is on purpose. We learned long ago that traditional method of discipline don't work at all. I remember more than one frustrating conversation after another (before I understood this principle) where I would lay out a punishment, "no TV." Countered by, "well, that's okay I have been meaning to watch less TV." I would add to the punishment no this, no that. Countered by mental adjustments making whatever punishment was given a good thing. Frustrating at best.

Then at some point I realized my goal was not, should not be to to punish. The goal, the thing I wanted was for them to learn. A long time ago our punishments changed. We don't do timeouts for set times, they are dependent on the kid and how long it takes them to pull things back under control. We use them as a reset button. As soon as they are calm and ready to talk and listen then we are done with punishment and ready to learn. Learning is the goal. We talk about why something was wrong, how to handle a situation differently, what to do, how to communicate. Whatever the situation requires so that next time we can achieve a different outcome.

Accept progress as progress even if it's a tiny bit - celebrate it!

Progress can be so slow that sometimes it doesn't feel like we're making it at all. Be watchful for progress, find it where ever you can and point it out, celebrate it. Especially when you are in the middle of disciplining and teaching because something went wrong find the ways in which your child has improved and point those out. Eventually you will look around and realize you are much farther up the mountain than you realized. They will see it too. One of that hardest battles our kids face is self esteem. The sense that they are less than others because of their struggles is evident to them all the time, even when no one is specifically pointing it out. It often leaves them feeling like they are broken. Who can effect change in their life when they feel broken? I don't believe anyone can. We need our kids to feel empowered, to know that they are brilliant, and that whatever problem that lies in front of them is not bigger than their ability to meet it head on and conquer it.

Encourage your child to engage in what they are passionate about in a healthy way

Pursuing the things that they are passionate about, sports, music, art, drama, science, literature, whatever it is, creates balance in our children and that translates into balance in our lives and home. It is important enough that despite pressing schedules we carve out time for them to engage in whatever their passion is. It feeds them the best things in life, confidence, creativity, empowerment, teaches them to set goals, to endure hardship and opposition, conquer failure and in the end find success. It gives them joy. It gives me joy as I watch them.

Enjoy your children

Don't allow yourself to be so tired or worn out by the day to day battle that you can't enjoy your children. Find ways to stop and enjoy the wonderful spark that makes them an individual. Laugh with them, celebrate them. Approach life with a healthy dose of humor. Our sense of humor is a lifeline. It is an anchor in our home and often the vehicle by which we use to teach most effectively.

In fact, as my husband is quick to point out there is nothing like humor in its ability to turn around a tense situation or meltdown.

We have a motto: Aro family making simple things hard. And when we have really made life more difficult than it has to be we drag out the motto and laugh at ourselves. We enjoy our impulsiveness, our creativity, our whims, our diversions. We laugh together, sing together, get frustrated together, make up parody lyrics together. Those are our things, your things will be specific to your family, maybe its have Nerf wars together or playing sports together, whatever it is do it and have fun doing it.

Make time to take care of yourself

Admittedly I am horrible at this, so my advice would have to be either do what I say not what I do or enlist friends and family to make you stop and get some time to yourself to retreat and regroup. I have great family and friends who drag me out of it all so I can keep perspective. I remember sometimes when my kids were all younger and life seemed very overwhelming I would put myself in a time out. That's right, realizing that my kids were just being kids not doing anything wrong, I would say to them, "Mommy is overwhelmed I need a time out." I would go take a few minutes where I had some space but could still be aware and hit my own reset button. I have found hobbies and diversions that help me cope, find more patience, more enjoyment, more love, more fun.

And as Dory says, "Just keep swimming!"

Just keep at it. I have hard days, I have times that I think we're not making any progress at all, I lose my temper. However,  I know that if I can just "keep swimming" I will be surprised how far we've come, how much progress we've made and how much fun we've had getting there. Our family is older now, I can look back and see with ease the things that have worked and the things that were disastrous failures. In the end, it is the guiding principles that have made the difference in our home, that have helped us find our own normal and embrace it. I have to say we've covered a whole lot of ocean by just following Dory's advice in Finding Nemo and we've had some great adventures. No doubt we have lots more ocean to cover, certainly some uncharted territory yet to explore, and undoubtedly more amazing adventures as we just keep swimming.