How to handle the Holidays-October

They can be real tricky for a family with an autistic or mentally ill child.  So many things change.  Most of the year, the holidays are just one day or week-end celebrations and can be manipulated to be handled.  You will need to be aware of environment, people, traveling, etc.  When it comes to the fall, however, most of the holidays are drawn out for days, weeks and even months!
  Halloween is way too long in my opinion.  It seems the season gets longer every year.  It still poses problems in my house.  The constant bombardment of images, scary faces, cob webs, are everywhere and really affect children with autism.   Unfamiliar smells, sights, sensory usually means sensory overload can happen anywhere.  This makes simple trips to grocery store or even the dentist challenging for parents.  Then the candy, the temptations, the food coloring, the sugar messes up things, too.  People without special needs children rarely get that these seasons pose extreme upheaval in our households.

 There have been adjustments we have made throughout our journey.  Some of them worked, some didn't.  It's the old "try it and see" thing.  Here are a few survival tips from me.
  1)  Avoid everything you can!  If at all possible, don't go through the costume aisle in the grocery store when your child is with you.  Don't go to the party store with them, either.
 2) Forecast, forecast, FORECAST... When retailers pull out the decorations, forecast what they might see different in the stores before you go and that is just pretend.    When the time comes, explain the costumes, etc.  This can be such a scary time for children.  Most therapists work on preparing their clients, but even the older ones need reminded.  I still have to forecast to my older son.
Here are some other ideas:
  Plan the party at your house.
 Give other things than candy, toys, games, etc.
 We usually have to avoid the large parties or gatherings, so we plan a family movie night with a special
  movie.

The change of daylight savings, the adjustment of school, siblings leaving for college, change of the weather all gathers in my son's emotional state in October.  The bombardment of Halloween usually sets him completely out of sync.  We have to handle the stress of this season very carefully.

I will be sharing more about the holidays in the days to come as time allows.  Yes, we are out of October, but into another season of difficulties.  Be patient with me, for I am a mother on a journey with a special needs son who demands much of my effort and time.

Thanks for stopping by,

Lynne

Sharing the Reality

I often say,  "reality smacked me in the face and it stings".  Well, here's the thing.  I started this blog a couple of months ago with full force.  Reality is, life hasn't been all that smooth.  I wanted to share what I knew about our experiences but didn't have anything to share that I knew recently.  What I am trying to say is there will be days when you feel like you know nothing.  No strategy, no coping skills, no tool to help your child through.  Been there, done that, bought the T-shirt.  Even for us after years of learning new strategies, new skills, new techniques, we still have those moments when I have no clue what to do!  We are there, now. 

  So what do you do.  You just start trying everything you know.  When you have tried something and it fails, try something else.  For us, we lose functioning capabilities when lithium is too high.  That means I give lots and lots of verbal cues to him throughout the day just to get him through.  (He is 19, people.)   I make sure he hydrates, exercises, and doesn't have any other health issues like a cold.  Then, I notify his doctor and call for a blood level on his lithium.  These are the times when I have to be careful of his safety.  If he is helping out in the kitchen, he could cut himself.  While walking in public, he is usually oblivious to cars or people around him.  He stays in a fog.  Everything is difficult.   Simple tasks and everyday routine become difficult for him.  These are the times when I feel like I don't know enough on how to help him. 

There is another time when I doubt myself.  When a doctor says, "It's simple, you just..."  Those are words that a parent who is living day to day with incredibly difficult situations that can make you feel like you don't know anything.   It happened in therapy recently with me.  I felt my mind start to questions if I had missed something.  Could it be that simple, just....  Come on people.  They don't live in your house every moment that you do.  They can offer some great tools and techniques and even wisdom, but you are doing the every day life with your child.  You see more than anyone what is happening, when it happens and even gaining insight as to why.  My advice, take those comments " you just...",  evaluate them, try them, but don't let them sink into your emotions or heart and cause you to think you don't know anything.  You are learning everyday what it takes to help your child to function at a higher level.  Some days you make strides, some days you don't.  That's just the way it is. 

Reality is what you deal with.  There will be days it smacks you in the face and it stings.  You miss things you wanted to do, you lose sleep, you have to change your schedule and the list goes on.

My reality is I have a great family, great parental and sibling support, and most of all the help of my Heavenly Father to see me through every step I take.   So, it's okay I don't know what I am doing, for He does!

Thanks for stopping by,

Lynne

Change of Seasons

I know it sounds weird, but the change of seasons affect autistic children.  Mine is especially throw off by the daylight savings change in the fall.  It means darkness falls much earlier, which means anxiety grows more daily.  He hates the dark, all of it, everything from a room, a basement or even the outside.  Getting home before dark this time of year is much more difficult.  Have I found ways to help this, not really.  We still have to leave a light on at night, he doesn't leave the house after dark.  He might sit out side at a bon fire, but it's certainly not without much stress for him.  Even if it just got dark, he won't go out to the car. 

The other thing that happens is his mood becomes much more depressed.  My doctor says that the sunshine has a part to play in this.  A couple of winters ago we acquired and invested in a light therapy box with help.   My son would sit under it for a bit everyday to replace the sunshine he was missing.  It worked, somewhat.  The timing of when and how much takes a bit to play with, but it's an idea for you to mention to your doctor is you are struggling with some depressive issues during the winter. 

The last thing that causes problems in the fall is sickness.  Although we are very careful washing our hands, it's cold and flu season.  Our world changes so quickly if my son gets sick.  Every effort it takes for him to function on any given day, is redirected to handling a runny nose, congestion or a sore throat. It means much more drama, situations, and stress.  Most of the time it's simple stuff that throws him for a loop.  I drag him to his appointments to keep things moving in the right direction, but let's just say life takes on much more effort for us both.

I know this is a short blog, however, it is the change of seasons.  My life has changed with the time change and my son has a cold.  So, yes, life is more difficult and delicate.  That's just the way it is. 
I draw strength from heaven.  I know it's a season and I just move on.  This too will pass.
These are the seasons that require the use of those gifts of respites I spoke of recently.    Be sure to check out my blog on living without the chaos if you don't understand.

Thanks for stopping by,


Lynne

Learning to live WITHOUT the chaos

It sounds strange, but this is a problem for me.  After years of chaos, incredible stress, and unpredictable situations with my son, I finally have realized that learning to live even a day or a few days without that chaos is difficult.  It happened to me just the other day.  I had just made an unexpected & unplanned trip to Iowa, 650 miles one way, with both children due to my dad having a severe accident.  Within 10 days,  I drove 2 1/2 days, took care of both parents, their home, put meals in the freezer,  helped my sister to prep their house with everything they needed, visited with most of my family, and took care of my own children.  By the end of the week, I was spending every extra time I had with my son to make sure he was making it through this whirlwind successfully.    After arriving home and crashing, I took a few days to catch my house up and make up a few appointments I had missed, buying groceries, and so on.  I hadn't been home more than a week and a pastor spoke on getting out of the bleachers and getting into the fight.  For some reason I immediately thought I wasn't doing enough and felt guilty.  For instance, one day I feel asleep for a nap and slept almost 2 1/2 hours.  I honestly felt guilt for that.

  My mom is the reality check in my life when I get things messed up and we talk often.   She is more aware of what I deal with on a daily basis, sometimes more than I am.  I shared with her that I was feeling guilty and not doing enough.  She reminded me how much effort it takes from me to keep my home running, especially when my husband is working so many hours right now.  She also graciously reminded me how much effort it takes to keep my son functioning at any sense of normal level and how delicate that balance is.  She knows it takes a slight routine change to set things awry and quick!  I know this, too, but for some reason, when the chaos quiets and I get a gift of respite, my motor that is used to running fast and furious forgets how to idle down and relax and enjoy the respite.

This respite gift may come in not having too much to do in a day.  My advice, don't go ahead and schedule something in that time;  take a nap, read a book, take a walk, go shopping, take a long hot bath... You get my drift.  For us, I am primary care-giver and it's just me and his dad usually 24/7.   Most of the time we can handle it and live life fairly normal. We have seasons though, we aren't even a year away from the last one that lasted over 2 months, that we are literally on duty 24/7, sleeping in his room and constantly aware of where he is and what he is doing every minute, re-directing, calming, helping him get through a day.

If you are a parent of an autistic or mentally ill child you understand that it takes so little to upset them when life's routines are messed with. Something simple like a cold sends my son crashing into utter despair.  If you are a care-giver, you should understand, too. 

So today, I want to encourage you to learn to live every moment you are given of little to no chaos in your life.  Accept it as a gift of respite.  They are nuggets of gold that help you get through what is next.  Believe me, there will be plenty more ahead that will require your motor to run non-stop.  Please take this time and regain the strength, stamina, and courage you need to continue on your journey. 

I pray if you need that gift of respite, you will soon find it.  If you are in a gift of respite, I hope I have encouraged you to accept it as a rare gift.  You deserve it. 

Thanks for stopping by.  Please feel free to share this blog with anyone on a similar journey.  My hope is to encourage!

Lynne

Just a few little tips...

Okay, so today is a light day.  I had a few tips I wanted to share that have worked for us.

Medications:    We have 3 different colored boxes for each specific time.  They obviously stay the same every week!  I taught my son to lift the lid after he takes them so all I have to do is glance at them to know he has had each specific days dosage.  Then I shut them before I go to bed or he does the next day and it starts all over.   We always leave them in the same place so we both know where they are.  We also re-fill them on the same day a week at a time.  This allows plenty of time for refill requests and also hopefully gets most of them on the same refill schedule.  If we are short for the whole week, I just fill the days I have and finish out the week when the refills are made.  This way I don't have to remember which box needs what.  Even though he is 19, I make sure he knows what each pill is and looks like.  He checks them before he takes them.  I make the boxes up every week or he does it with me checking them all.  It is too dangerous for mistakes.

Public Situations:
  We practice all the time on independent situations in unfamiliar circumstances.  I purposely choose different routes, grocery stores, gas stations and ask him to go after something.  This is usually extremely hard for him and creates great anxiety, but I gently push him.  I do try to spread them out so they don't all happen in the same day.  For instance, on the way to therapy I might buy gas somewhere new in the city for him to go and pay.  At a new grocery store, I will give him a coupon and ask him to find it and bring it too me.  This causes him to locate the item, read signs, compare products and sizes which is so important to his independent living skills.  We are currently learning to write checks.  We started slow, at a familiar bank and have moved up to unfamiliar once or twice.

Let me share a little story from our lives.  For the first time just yesterday, he noticed that he was really anxious.  Now, I have read this anxiety for years and knew the environment of public places with lots of people caused problems.  The breakthrough that has finally come after years of working at it is that now HE is noticing the anxiety and connecting the situation.  This is HUGE for helping him learn how to cope and de-stress himself.  There is a VERY long way to go, but every little victory is celebrated.

Celebrate the Victories:
That is my last tip people.  Celebrate every victory, accomplishment, or goal.  Just living a day for these children is difficult, but to accomplish new or the unfamiliar or get through difficulties with tremendous amounts of stress is a reason to celebrate!  When my son recently went into a new bank to cash a check even though scared to death, we all fist bumped him!  Other people who don't live with autistic or mentally ill children may not understand, but by now you should.  Go ahead and do the victory dance or the celebratory whoo hooo!  You both deserve it!

Thanks for stopping by,

Lynne

See Life through Their Eyes

When my son was younger and we didn't have a diagnosis,  trying to figure out why he would react to things was beyond mind boggling.   One technique I learned in much later years, was to see life through his eyes.  This took some training and research.  Today while standing at the front of church, he became agitated.  (We make it a habit not to leave him in groups of people by himself.)   He wanted to leave and his father redirected him and he calmed down.   Later while discussing the situation, he wondered why he became so panicky.  I let him know what I saw and  I reminded him that he was standing with lots of people, some who were new to him and we hadn't been there for a couple of weeks due to being out of town.

This is new for us.  Having him being able to describe how he is feeling and being able to redirect.  It has taken many  years to get to this point.  Believe me, it doesn't always happen so easy either.  There are many times he gets upset and has no idea why or how to make it go away.  When he was younger, radical unexpected behaviors happened everywhere.  I learned to take note of the environment and see what was happening through his eyes. 

Autistic children have heightened sensory input.  Most are extremely sensitive to smell, lights, sounds, crowds, colors and so on.  They interpret the world much differently.  Research, watch your child, take mental notes and you will son be able to see life through his eyes to help them cope with situations.  This takes time.  Years of experience from different situations is one of the best ways to help you see life through their eyes. 

Be encouraged, for with every struggle, trial, and situation comes greater insight into your child's world and how they see life.   I am confident that when a parent tunes into their child the insight and understanding comes.  I also believe that if you ask God for wisdom, He gives it liberally.  I honestly can't count the number of times I have asked for wisdom beyond my years and gained tremendous wisdom in situations. 

Thanks for stopping by,
 It's a privilege to share my story.
Lynne

Catching up

We have recently had a family emergency which required some travel and an unexpected stay at my parents with the children.  I have had many blog ideas racing through my mind as we have taken our trip and started the fall season.

There are just times that I am in a constant state of "catching up"   The past few days after returning home have been like that.  It seemed like every area of my life needed attention.  It was much easier at this season of my experienced life to just make a list and do it simply by priority one at a time.  I must confess that there have been times in past years while my children were younger that this state of "catching up" would cause incredible overwhelming dread and almost immobilizing fear.   Have you ever felt that way? 

Parenting an autistic or mentally ill child carries extra pressures.  More than one child, children of different ages, needs, school, sports, dance, piano lessons, etc, can lead to hectic, always running lifestyle.  This can lead to a constant state of trying to "catch up".   It's always striving for a "goal" that never seems to be reached and you feel like your failing at everything.  Some of us are born with the need to perform for acceptance which fuels this compulsion even more. 

It's simple.  Release the pressure before the bottle explodes.  List out the priorities and simply do it little by little.  You have been given a precious gift that requires extra time, love, support, and training. Catching up happens, eventually, and then you fall behind again...
You will catch up.  Don't be afraid to ask for help.  I know it is much easier to isolate, but people don't know you need assistance if you don't ask, my friend.  Most people just don't understand the demands. 
Be brave and courageous.

Thanks for stopping by and I will try to catch up on this blog soon! :)
Lynne

The In-Between

There is a place I call the in-between.   It's a place unique to children like my son.  Somewhere in the developmental process it almost seems like you have stalled by the road side and are broken down.  We are in an in-between season and I suspect  we will be for an undetermined amount of time.  Even though my son has officially finished high school, he is not ready for college or trade school.   This journey is new and unpredictable.  My husband and I have taken steps to help him aim for bigger and better things in life and prepare for the next phase.

One of the first things we have done is added a transition counselor who specializes in my son's diagnosis.  He has helped us to focus on accomplishments, creating them, and recording them so they can be an encouragement.  I help him keep track by recording them so in the session I can help him remember if needed.  He is also working on goals and career choices along with investigating careers of interest at his own pace.

Another thing we do daily is create opportunities to learn, apply, or participate in new life skills.  This can be a simple as writing a check, a trip to the store where he goes in alone for items, or staying at home by himself for a few minutes while I run an errand.  We are training him in every possible area.  My son loves learning how to cook foods he likes and it boosts his self-esteem.

We set goals that pertain to his skills and future desires.  He is learning how to type and works on reading regularly for future education.  We have sought out classes and lessons in the community that help him develop his art skills for future endeavors.   He is writing letters of correspondence to his therapist and family to better his communication skills.

Is this a phase I can say is easy?  Absolutely not, but I am learning to take it a day or week at a time.  The reality is that his doctors and therapists are working on skills he has to acquire to proceed with life  and those have to come first.  One step at a time.  If he acquires the coping skills to handle the anxiety, then and only then can life proceed.   It's a delicate balance.  My husband and I continue to seek for wisdom and direction to help him adapt and proceed through this in-between phase. 

One thing that I am sure of is this hasn't been our first in between phase, nor will it be the last.

Learning to Limbo! 

Lynne

The Changing cycles

I wanted to share a bit about bi-polar disorder.   We didn't know what it was for years.  The first time we even had heard of it was from parents who had a teenager in our youth group.  My son was really little at the time and had no idea we would experience this in our own child. 

This mental illness used to be called manic-depressive disorder.  It is real and it is a chemical imbalance in the brain.   To break it down, the highs or mania are really high.  People with bi-polar disorder have a manic episode have incredible energy, sleep less, talk fast and have grandiose ideas about their ability for just about everything.  The depressive side is just the opposite with extreme lows.  They feel worthless, sleep much more,  everything is an effort.  

When my son was younger, he cycled several times a day, switching from mania to depression in a matter of minutes, it was crazy and difficult to handle life.  You never knew when  some little something would affect him.  Life was real fragile for a few years.  Mania meant making sure he paid attention to simple things like looking before he ran across the road to play, or slowing him down to talk to you because he talked so fast you couldn't even begin to understand him.   He was clumsy, spilled lots of things just moving too fast.  He was the energizer bunny.  Then he would flip to total despair, crying, and thinking that he was doomed to die.  This rapid cycling was exhausting to keep up with.  

Seasonal cycling started about 5-6 years ago.  My doctor has kept records and has charted the cycles.  I would encourage you to do the same for yourself.   Just document the months you see changes.  For us, my son starts manic behavior around the end of the school year.  This is typical because the routine changes and you lose structure during the summer months.  He also had issues with bugs and hated being hot.  Then in the early fall,  if the mania isn't under control, it usually gets worse with the start of school.   Typical behavior due to new school year, new routine, people, etc.   By late fall we cycle from mania to depression about October.  My son seriously dislikes Halloween, passionately.  The images are disturbing to him, always have been.   We can be anywhere this time a year and he will see something disturbing, and well, let me just say it goes down hill fast.  The depressive side means it's difficult to get him to do anything.  He is sluggish, sleeps more, has no self esteem, feels doomed and often battle repetitive thoughts of hurting himself.   My husband and I stay on "duty" 24/7 during these times. 

There are a few things we do during both cycles.  During mania, we restrict his sugar and caffeine intake.  Have you seen the squirrel on a movie that drinks too much coffee, that's my son!  It helps considerably.  We get him moving to burn as much energy as possible.  His brother wrestling with him used to help tremendously.  During the depressive side, we get him walking on the treadmill to beef up those endorphins.  We use lots of humor, have an "open door" policy in his room and just try to encourage him as many times as it takes to help him walk through it.  We have tried light therapy in the winter, it has helped some too.   Not many people can understand the trauma going on in his head even though he looks to be "okay" to others.  A simple comment in church can send him into a deep, dark place.  My radar is always on.  We let him know we have his back.  


If your child has bi-polar disorder, chart the cycles.   If they are cycling several times a day, let your doctor know.  This is important information.   Research all you can and learn all you can.   Being knowledgeable makes such a big difference in helping your child reach their full potential during these difficult cycles.  Again, I am no expert, just a parent who has walked through some experiences.

Thanks for stopping by and feel free to share with anyone who might benefit from this blog.

Lynne

Relax and Take The Alternate Route

Driving on a journey can be done faster usually on the interstate.  There are lots of lanes, convenient services, and less obstacles to encounter.  Today, I am taking about the alternate routes you take with children with mental illnesses or autism.   

Recently, my family met my oldest son who is away at college half way for dinner.  It was in beautiful east Tennessee.  I love to travel in the fall to see the scenery.  On our way home, we decided to take an alternate route back home.  It was one we had never been on and it was a windy road down the mountain.  The day was just perfect for rolling down the window and enjoying the view.   For me, a road trip on back roads has become a place a relaxing.  I usually want a cup of great coffee or tea in my hand as I  look out the window.

In thinking about life as a parent or life coach for my diagnosed son with mental illnesses,  I remember the many times it felt like we were taking an alternate route from the flow of life others were taking and the route we expected life to take us.  It used to stress me out.  I have to admit, in my younger years, taking the interstate was faster and got you to where you were going in less time.  Life's pace was faster and I had too many plates spinning in the air I had to keep up.  I didn't enjoy anything that took us an alternate route from the normal realm of travel for a parent and child.   The extra appointments to work into the schedule, the extra time to get ready, the extra patience, and the episodes of complete chaos that took us off the road we were on to unfamiliar routes.   I have to admit, I faced them with complaining and frustration which in reality, just made things worse.

I am no sage, but I have learned a few things that have helped the many alternate roads you travel on with our children.   One things is to just relax!  You will get to wherever you are going when you get there.  No fretting, worry, or frustration helps you get there faster, my friend.  It is what it is, so just relax.   All that fretting, worry, and hurry does is affect your own health and the peace of your children.  Believe me, I know. 

Another thing I have learned is enjoy the trip.  As I said before, I love a good cup of coffee while traveling.  I still find a good cup of coffee when I am weary running to appointments to help me just relax and enjoy the trip.   I guess the coffee in my hand reminds me to chill.   We also instituted something years ago when having to go to countless appointments for my children.  They would be treated to a special treat or lunch somewhere new.  I can' tell you the number of difficult therapies that we got through with my son by giving him a special reward for enduring.  Many restaurants have been explored by us in the city by doing this and special memories made that allowed all of us to enjoy the trip.

The last thing that I learned is to make the most out of the trip.  Use your time wisely.  Plan for those long appointments, not only for your children, but for you.   Bring stuff to read that encourages you or paperwork you need to do.  If you knit or crochet, it's a great time to get some gifts done!   Some of our appointments took lots of time and waiting.  It really helped me to have things that needed done with me to help keep my life less stressed.  (Now, I realize, when they are younger your entire time is spent keeping them from stressing and helping to entertain them.  It does get easier through the years, be encouraged.)  Another thing I learned to do while I was out was to fit as many other things in I could.  I would make a Walmart or grocery run on my way home so I didn't have to make another trip out or run through the drive through at the pharmacy or the post office.  Learning to make the most out of my alternate route helped my productivity and lessened the stress for me.

The next time you are driving on an alternate route in life, remember you may not have chosen this route, but you can choose to enjoy and make the most of it and just relax.  You might as well!

Thanks for stopping by,

Lynne

When the storms come

As a parent of a child with multiple mental illnesses, I understand that storms come into your house and into your family.  Just like storms in the weather, they can be unexpected and come up quickly or brew for quite some time and you can see them in time to prepare.  I looked up instructions for sailing in bad weather.  You have heard the life saying that if life changes, adjust your sail.  I found some of the sailing through storms instructions applicable for sailing through life's storms with a mentally ill child.

• Record your position in the boat's log.
• Assign tasks to each crew member based on ability and experience.
• Fatigue plays a major role in boating accidents - poor decision making; lack of co-ordination; apathy and morale. Schedule shifts to keep the crew as rested as possible.
• Prepare meals in advance and then re-heat. Warm food will help avoid hypothermia, increase morale and the extra carbohydrates will give the crew more energy.
• Look at the chart for potential hazards (lee shore, rocks etc.) and areas of safe harbor. Pick the best route with alternative routes should conditions change.
• As a skipper it is important to remain calm and to instill confidence in the crew that everything is going to be alright.

My family has faced some incredible storms in the past ten years.  Some of the above instructions can be applied as follows:

    * Record what is happening.   This is so helpful for the doctors and therapists on your 

    team to better assess and provide assistance for you.  When your days run together due 

    to stress and lack of sleep, you can't possibly remember everything.  Take time to jot down

    specific incidents, behaviors, aggressions, etc.

    *Get assistance by assigning tasks to others.  Acquire help from family

     for picking up other children from school, going to events, etc., which allows you less 
      responsibility.  Allow others to help. This may mean asking your children, neighbors, or 
     friends for assistance. You will need others on your crew. 

      *Take Shifts.  Fatigue sets in fast when dealing with a mentally ill child in a storm. 
       Fatigue can cause you to over react, make poor decisions, and be more overwhelmed.
       Realize that you will need sleep and breaks.  In the hardest storms of our lives, my 
       husband and I take turns taking shifts.  My beautiful husband has come home from a
       long day of work to sleep on my son's floor more times than I can remember.  He also 
      "takes a shift" so I can take a nap or get a way for a couple of hours.  We have even 
       taken turns going to church.

     Prepare meals and have family dinner.  Family dinners happen all the time in my 

     house, usually 5-7 times a week.  It centers us and brings stability to everyone.  It is 
     harder in a storm to make this happen, but we take any short cut we can to make it 
     possible.   If people ask how they can help, let them know that providing a dinner would 
     be a great help!  Order take out, use a frozen dinner, or eat sandwiches.  Keeping
     routines helps keep stability and builds morale.  

       *Check for areas of potential hazards and for safe harbor.   
      We don't have people over when we are in a severe storm, it would be a definite 
      potential for disaster and more added stress.  We plan an alternate route if the conditions 
      don't change.  We talk to our doctor and have a plan.  We also change our schedule, 
      lessening activities and outings, taking safe harbor until the storm passes in our home
      with comforting measures.  You have to stay in the safe place until the storm passes.

      *Remain calm and instill confidence.  As a parent of three children, the worst storms 
      affect us all. I must remain calm not only for my son, but for my other children, too.  It is 
     necessary to let them know it will be okay and that this storm will pass.  They see, hear,
      and smell, the storm just like everyone else.   We hug, encourage, and pray with all of 
      our children during severe storms.  

Weather changes and storms happen.  It is a reality with a mentally ill child, in life, and in this world in which we live.  Learning techniques to help you weather the storm is an important tool for survival.  Remember, this too shall pass.


Encouraging from my heart,
Lynne

Exposures: What Are They?

     Exposure: psychotherapy that involves repeated real, visualized, or simulated exposure to or confrontation with a feared situation or object.

      This is a word I didn't know until we had a firm diagnosis of Obsessive Compulsive Disorder for my son about the age of 15.   It was introduced several to us in therapy to help my son overcome irrational fears he was currently dealing with.  If it is used properly with the right therapist, it can be greatly effective.  This technique has worked and proven successful in several areas for my son.   I will stress, however, that is has been successful with the right therapist who builds a relationship of  trust with your child.  We had a doctor mention exposure therapy years ago because my son had issues with germs, dirty hands, lots of hand washing, etc.  This doctor wanted to put him in a garbage dump.  That is not the kind of "exposure therapy"  that I am talking about! 

    Exposure therapy is a gradual confrontation of fear.  It takes time, diligence, and great patience.  We were blessed with a great therapist who not only worked with our son, but taught me how to use exposure properly help him.  The key to success, however, is not to over expose.  This can cause severe anxiety and stress that causes the functioning level of daily life to plummet.  For us, it's a constant evaluation of his stress levels everyday.  We are currently using some exposure techniques in weekly therapy.  These techniques also have to be done at home in between sessions.  It is much more difficult to do specific exposure targets at home, but it is vital to success in therapy.

 In our situation, I can quite honestly say, life brings my son exposure situations all day everyday.  Exposure to him can be as simply as going to store with too many people or a place he has never been.  Unexpected routine changes,  being in a new location in the city, or just being away from home are exposing my son to his irrational fears or  severe uncomfortable feelings that overwhelm him.  We have to push gently, sometimes not so gently, all the while balancing his anxiety levels.   Each exposure helps him gain accomplishments and achieve skills for a better quality of life. 

My experience has taught me, you know your child best and you have to live with them everyday.  You reap what happens if a therapist pushes too hard with exposures and increases anxiety to severe levels.  SPEAK UP.    Find someone who acknowledges you and your involvement and knowledge of your child's stress levels.  You are a vital part of a team!  Never let anyone tell you otherwise. 

Keep the goal in mind. 

Thanks for stopping by,

Lynne

Lynne








 

It still takes my breath away...

It happens at any moment of any day during any season you are in. It will send chills down your spine, give you a lump in your throat, and take your breath away. I am talking about a sudden, unpredictable change of mind, mood, and behavior from a mentally ill child. It's so sudden it catches you off guard. It's so unexpected and out of the blue you couldn't have predicted it. It is such a severe change of mind-set, drastic mood change, strange behavior your whole body feels the effect. You try to appear calm on the outside. On the inside you are dealing with a bombardment of raw emotions.

As a parent of a child with multiple mental illnesses, I know of these episodes. For us, they have been rare. They are usually triggered by medication effects. However, any parent knows that this kind of an episode in their mentally ill child can lead to so much that could go wrong. The things that you hear about on the news, wrong. Let's be honest. It's SCARY. We have had those moments. Although rare, I know the outcome. I have been to the psychiatric hospital with my son. When he was 13 years of age and we were just on our medication journey, my son became psychotic and we had to admit him into a youth facility. It took hours. We went to see the doctor, he talked with my son and I, and advised hospitalization. I was so NOT prepared for that. I thought we could change a med or something. While we waited for his dad to help me tell him, we bought some things he needed, ate lunch, and I tried to act all calm. When his dad arrived, we told him what we were doing. We had to wait for evaluations from insurance companies, doctors, hospitals, and it was hours before we were able to leave. All during this time, we knew we had to keep calm. On the inside, we were freaked out. I understand what an episode like this does to a parent physically, emotionally, and mentally.

Here's the reality. Those episodes happen with mentally ill children. Glimmers of those episodes appear often. It happened in our house today. Just the glimmer of one of these episodes sent a chill into my spine, gave me a lump in my throat, and took my breath away. Although it was a brief, it is a stark reminder.  It keeps me on my knees.

How do I handle it, you ask?

1) I tell myself to breathe. It sounds simple, but it's really important! I remain calm so I can evaluate if steps need to be taken. I need to decide if it is just a glimmer, a small, or an full blown episode. I act responsibly to every situation, no matter what it calls for. I have my doctor's cell phone number in my phone and know his instructions for immediate assistance if a situation warranted. We currently are in the middle of medication adjustments and have been for about 1 ½ year. Puberty and hormones, I am sorry to say, have messed up anything that had worked before. Today His doctor and I emailed and talked on the phone to yet again adjust his medications.

2) I also call my support people, my mom and sister. Just telling someone about it helps relieves the stress. They understand. They have walked with me through this for years. It's real important when you are sharing something so sensitive to do it with people you can trust and that understand you, your situation, and your child and won't try to read anything else into the situation. Trust me, it doesn't work to tell people who don't understand or read something else into the situation. I have been there and reaped the outcome of added stress and frustration. My advice is to choose wisely whom you share sensitive information with. 

3) It's frustrating and wearisome, but I keep the mission in mind. Helping my son to achieve his highest functioning level possible. It keeps me focused during these seasons. To do whatever it takes, takes courage and determination to help your child.   Know the hospital is a place of healing and help for the sick in body and the sick in mind.

So, when your breath gets taken away, remember to breathe.  Stay calm.  Regroup with support.  Keep your mission or purpose in mind.  

Sharing my heart,

Lynne

Medication Issue: Part II

Some tips I have learned about medication.

• Have a specific medication schedule.  Set the same  time every day.
• Always oversee medication.
• Use different colored weekly med boxes for each different time of day. 
  

Having a specific schedule is so important.  Most of the medication we use have different lengths of time they stay in the body.  Timing is everything.  Some drugs are time released, so will have effects for 12 or 24 hours. Others have shorter life times.   This is important to know when you are documenting behavioral changes or effects of the drugs in a journal.  I often found that a drop in mood would happen during a lapse in meds. This helped us find a medication schedule that worked for my son.  Ask questions about the drugs with your doctor and the pharmacist.

Always oversee medication.  We have used a weekly box for years.  Different colors for different times of the days, however, there were still scary times.  There was a time when he took two sets of meds.  Once he took his night meds in the morning.  Then he would take some and dropped some and I didn't know what he took.  Some of the meds he has CAN NOT be taken twice, it would be dangerous.  I still oversee the medications.  I load the boxes and have him periodically show me what he is taking.  Keeping your child safe is extremely important. 


Expect adjustments to each new meds.  Some of the ones we have used cause him to sleep quite a bit in the first couple of weeks.   Some made him eat more and gain weight.  Our family bought a commercial grade treadmill.  He walks almost everyday for 30 minutes. This helps to keep his weight managed.  We had to do this because he is not sports minded and has trouble going outside for any length of time.  Walking regularly also helps his mood.
Unfortunately, you need to be prepared that some medications may come with complications.  We had one med that caused a heart issue.  Keep your journal and make sure to notify your doctor.  My doctor's persistence in testing for side effects caught the heart issue.

Note:  Hydration is crucial.  I still pack a cooler on days we are out so there is always drinks available.  If he doesn't drink enough, he gets foggy and lethargic.  Anytime he looks this way, I give him a drink, it usually works.   

I have purposely not shared what medications we have tried or used with you.  You see, years ago, someone told me not to put my son on a certain drug.  Her son had a severe reaction.  This scared me to death.  I would not allow anyone to give my son this drug.  Here's the thing, my son is now on the drug and does much better with it in his routine.   I had a great deal of fear to overcome in the beginning.  My doctor, however, always goes over the risks and side affects and checks him if there is concern.  I had to learn to trust him.  A process clogged by pre-conceived ideas and fear.

Remember, the medication journey is unique to each child.  Each child's chemistry is different.  It's a long process of trial and error that takes time and diligence not only on your doctor's part, but on your part as well.  Your input is vital to helping your child achieve the highest functioning level possible. 
Be brave.  Research.  Be informed.  Journal everything.  Know the goal, to help your child achieve his/her highest level of functioning.  Have hope. 

Thanks for stopping by,

Lynne

The Huge Medication Issue: Part I

I am not sure if I can share all of my experiences with medication in one post.   We have had an interesting journey with meds.  To begin, we were convinced we could do it without.  Remember the story I shared in "A personal experience"?  We did attempt meds at age 9 from some quack in Ohio.  He gave me 5 minutes and put my son on an anti-depressant.  Well here is what I have learned since.  You can't give a bi-polar kid anti-depressants, it makes them manic!   It took about 2 months of this and we gave up medication again.

When my son was 12 years of age, reality set in that our son had no quality of life, whatsoever.   I woke up about 2 or 3 times a week to my son sleep walking or night terrors.  He could not go outside at all because of fears or paranoia.  He rarely laughed.  My precious pastor's wife at the time had twins with PDD, (an low functioning autism) and suggested a developmental pediatrician in Chattanooga.  We finally had an appointment to see him and filled out the all the "paperwork".  (Oh for a nickel for all of the questionnaires you have to fill out through out their life time. ) Our first visit, the doctor brought up meds.  It didn't take long before he met with my resistance and experiences.  I shared what had happened and he explained why those meds wouldn't work for my son.   The doctor then proceeded to tell me the long journey to find what worked for my son's body and that not everyone responds to the drugs the same way.  He also explained that it usually took 3 medications together to make a difference.  I was swimming by then in grief, thinking that I had failed.  He must have seen the look in my eye, because he took more time to talk about why it was important for my son's brain chemicals to be balanced so it didn't affect his future.  He also assured me that we start slowly with one medication at a time.  I have to be honest.  I cried all the way home.  My husband cried when I told him.  I think we cried for about 3 days straight.  Honestly, it was just fear of the unknown and grief over having to medicate him to provide quality of life.  We felt like we failed in some way as parents.

So if you are new to medication, here some important things to remember.  You start with one at a time.  If you don't, there is no way to tell which one it working or not working!   When you change you do the same thing, one at a time.  When we started, we had many failed attempts at drugs.  Some didn't work at all on the "therapeutic dose".   One made him crazy and he started throwing himself up against a wall and using curse words I didn't even know he knew!  Each time something didn't work, we had to usually stop it slowly, over a course of a week or two to get it out of his system.   Then start all over again.  We went through almost a year and a half of this before we found something that worked and could add another drug. 

All during this time, his quality of life was still so low.  The effects of the drugs were discouraging, but we knew we had to plow through it to help our son.  Slowly but surely,  I mean SLOWLY but surely, we started to see improvement.  

If you are on the medication journey, be encouraged.  It does eventually end.  You do eventually find the right combination of drugs for your child.  Their life will improve.  Expect some trials, expect needing to call the doctor, that is why finding one who actually calls you is important.   Document each medication, dose, and response for your own records.  I needed this so many times in future years.

Remember just because you say yes to the medications, you are not a failure.  If you son or daughter had a heart condition or diabetes, you would give them the medication they needed to survive.  This is no different.   Ask questions about side effects.  Be aware of what to watch for.  Be knowledgeable about how your doctor is going to keep a check on how their bodies are reacting to the meds, i e bloodwork.  Read the information they and the pharmacist give you.  Be sure if you give them ANY over the counter drugs, you check with either the pharmacist or the doctor.  You would be amazed at the simple over the counter drugs that can cause problems. 


Okay, that is part one.  Then there is puberty... Part II : )

Thanks for stopping by,


Lynne

Heart to Heart

I was thinking tonight of how I wanted to share my heart with you.  You see, about 6 years ago my heart started showing great signs of stress.  I wanted to go back to school, but things with my son were difficult.  I started back to college to finish a degree and 2 months into it, I wound up in the hospital with a heart beating way to fast.  Upon being rushed for a CT scan, the radioactive die blew in my vein and my right arm had a reaction.  I was in the hospital for a week, holding my arm above my head.  A surgeon stayed with me all night the first night, checking my arm and hand that was swollen 5 times it's size.  He was ready to rush me to surgery any moment to relieve the pressure to prevent my hand from exploding.  Crazy, I know.  Thankfully, my arm recovered.  It was one full year before I gained total use of my arm back.  My heart had to be shocked back into rhythm at another hospital through a scope so they could look at it.  Obviously, school was stopped that semester.  Honestly, I really had not thought about the continuous stress in my life.  I started to think about my heart health much more.


Upon recent visits to the doctor, my body has continued to show signs of stress.  I realize I am getting older, however, my stress level remains much higher than most.   People make the comment about how I live with what we live with.  To me, it's life.  It's what I have to live with, but I want you to know I don't do it alone.  If I have learned anything, I can not bear this burden.  The incredible grief, pressure, stress of caring for a mentally ill child is too much to bear.  We have two other children, one who gets just as much time and attention as my son.  Sometimes I feel like the energizer bunny.  Other times I am so drained I can't even function.  

A therapist asked me the other day, "how do you handle all of this."  Well,  I don't.  I can't handle it alone.  I have an incredible life partner, my husband, who is my battle buddy in life.  He has invested every part of his being into life coaching our son.   He spends as much time as physically possible with him after very long days at work.  I have support from my family.  My momma listens to all of my rantings, cries, and frustrations.  I wouldn't have made it this far without her.  Most important, I have a relationship with Jesus, who is my strength in weakness, and I am nothing without Him.

Nurture your physical body, mental wellness and your spirit man.  This is a long journey.  I love to read, coupon, cook new recipes, and bake.  I love to sit outside on my back deck with a cup of coffee and spend a few moments in the quite reflecting, looking up into the sky.  My devotions give me encouragement and courage for the day.   I love to walk.  I am not able to leave my house or my son for too long, so we bought a treadmill.  It's not as fun, but it's good for my heart.  My husband and I don't get as many date nights as I would like, but we do as many as we can, even if it's a cup a coffee for just a few minutes. 

You plan care for your child, start planning care for you.  It's vital.  I would encourage you to introduce care givers who can come and give you a couple of hours off a week.  It is amazing how just a few hours without the constant pressure  relieves you.  Also, there are some support groups out there.  Search the web for your a local support group.  If you make a commitment for caring for yourself now, it will make a difference for you in the future. 

From my heart,


Lynne

Engaging

Today I was reminded of the engagement process.  Engage means to occupy the attention.  In a child with preoccupied mental issues, engaging in life around them is sometimes difficult.  Paying attention to what is happening in the moment, being alert to situations, or simply remembering what they are doing or what they have been told to do.  There are some days when my son does not engage in the moments of life happening around him.   His mind is going so fast with thoughts that he can't focus on anything.  ANYTHING!  It happens with my son for no reason at all.  Yesterday, we were changing the timing on a medication and we did a little something different the day before.  Nothing was easy, everything took redirection or plan B today.  He was unable to engage in life while it was happening most of the day.

We have gone through situations where my son disengages for days at a time.  When his anxiety is too high too many days in a row, he does this.  There are other days when he seems to be living life engaged and all of a sudden he feels anxiety and you lose him.  It happened there other day at Mc Donalds.  My gentle giant got frustrated and anxious over something simple and he ran right out in front of a truck in the drive through trying to get to the car.   Scared me to death.  He was honestly clueless to his surroundings and almost got hit.  Situations like this happen out in public all the time.  I have learned to stay alert.

When your child disengages, it's a signal.  We look at what happened right before.  We discuss the situation now.  In his early teens, it wasn't possible to figure out what triggered the disengagement.  You just plunge through the day the best way possible.  Thankfully, now he has learned to communicate most of the time.  We review the situation  by talking with him and go over what went wrong and why it is important to be alert to life around you and how he could have handled it better. 

Some days we have to purposely direct him into life.   My husband and I work hard at encouraging him to engage in life.  My husband has things that just he and my son do like adventures into the woods or going to Academy sports.   I redirect with activities, routines or learning new skills.  He is learning to cook.  We are working on giving him accomplishments everyday and he loves being able to succeed at a new dish.  However, some days, like yesterday, he cut his finger just a little and it was over.  He didn't want to make his famous meatloaf for any reason, obsessing over his finger.  

I shared to encourage you.  Engaging, or getting your child's full attention does help the development process.  It should be used as much as possible.  There are some days you can engage them and keep them going through the day with redirecting, activities, new skills and adventures.  Please know there are some days you can't.  Maybe something happened to help them lose their focus, maybe is was simple and you can figure it out, but sometimes you can't.  I used to put added stress on me trying to figure it out and push him to engage, causing more stress on me, him and the family.  May I suggest you use calming techniques and allow your child to retreat to something comfortable for them if they aren't engaging.  Tomorrow is another day.  Adjust.

 Thanks for stopping by,

Momma Lynne

Make the Decision

Today I was thinking about the decision I came to about seven years ago.  My son was about twelve years old.   Our family had been through some real difficult couple of years, caring and losing my husband's father,  a difficult surgery for me with complications, a job loss, a move, a career change, and we then we decided to move to east Tennessee for my husband to go back to the university.  Once we got settled in, we began to realize how much difficulty our son was having coping with life.  Remember, we still didn't know the full diagnosis.  We had been told bi-polarity, but that was all.  That's when I really started to notice my son's behavior, moods, facial expressions, routines, and inability to cope with daily life.  He had very little quality of life whatsoever.  One day, something in me snapped into reality, and the decision was made.  I was going to make sure I helped my son learn to cope with life whatever it took.  I was going to do whatever I could to help him develop at the best level possible.  Little did I know then the sacrifice, time, commitment, or determination it would cost me, my husband, or my family or the people I would have to fight to insure the best for my son.

This decision has led us to do what some might call radical behavior.  Although we home-educated for years, my oldest was going to public high school.  We had thought that our son would benefit greater from a public Jr. high with some assistance.  The school did all the testing and because he was so intelligent, they really didn't see the need for too much assistance. I learned fast that those IEP (Individual Education Plan) meetings took lots of time and guts from me to step up and insure my son was getting what he needed.  We did a year.  We had to increase meds probably 6-7 times.  His anxiety levels were off the charts even with constant adjustments to his schedule and classes.   He didn't improve in any area of importance to quality of life.  We went back to homeschooling despite opposition from the school saying we couldn't offer our special needs son what he needed.   WRONG!  I went to his developmental pediatrician, asked for some therapists.  We found a pediatric occupational therapist in our city, had a thorough evaluation and started seeing them 2 full hours a week.  We found someone in a near by city for counseling and life coping skills and took him there for 1 hour week.
Did it get tiresome?  Yes.  All of these were with the all of the visits to the specialist who did repeated blood work, tests, evaluations on him every few weeks.   This went on for a couple of years and we started to see improvement in his quality of life.

Currently, we do almost the same and have since we moved to Nashville.  We see a therapist for life coping skills for an hour a week,  an OT for a hour a week, and his psychiatrist for medications and tests.  It takes at least one day every week, sometimes two days.  The decision to help him achieve his highest functioning level keeps us diligent to these tasks.  We continue to see advancement in quality of life.  It is a slow process for developmentally or mentally ill children, but it can happen.  I believe and so do people very close to us, that the steps we have made have paid off enormously for my son.  He is functioning at a much higher level.  His communication skills have increased tremendously.  Is he where he can be? No.  Our mission is still to continue to help him achieve the highest functioning level possible.  We believe our steps have been ordered and supported by our Heavenly Father.

I know it's a huge commitment.  You will have to sacrifice.  It may consume your schedule.  Make the decision to help your child reach their highest functioning level whatever it takes.   Your choices or steps are your own, as the needs of your child will be different than any other.  Do what you can.  It will make a huge difference several years down the road. 

Be strong and courageous!


Lynne

Redirecting....

Redirecting is changing the direction of focus.  For a child who struggles with rapid thoughts, paranoia, or obsessive behaviors, redirecting is a tool a parent can immediately use to help their child.

Today I was reminded of the beautiful tool of humor in our family.  My husband has a unique gift to redirect my son with stupid humor.  It works every time.  No matter the situation.  Although it sounds crazy,  I really don't know where we would be without it.  Humor was used several times today.  We use it to redirect behavior, obsessions, paranoia and mania whenever possible.  

Other redirecting tools we use were shared earlier.  Sometimes they work, sometimes they don't.  A simple touch, pat on the back, nudge during church.  Like I said, sometimes they work.  If he has allowed the rapid thoughts to escalate to extreme anxiety, a much stronger approach is necessary.

The stronger ones would include yelling "hey" from one of us.  Obviously to make this effective, we don't use this often.  Too many loud noises make him even more manic, so it's a simple one loud yell. Clapping can be used, too.

One of the hardest tools we use is getting in his face and yelling at him.  This is a last resort and is used the least.  If he is not responding to any other redirection tool and continues to escalate and we see aggressiveness, we get right in his face and yell.  His father is the only one who can use this tool the most effectively.  His brother can, on rare occasions.   It works, however.

Here's the rest of the our story.  When my son's anxiety escalates to enormous, unbearable levels, he is usually only aggressive on himself; pulling hair, choking himself.   There was one time several years ago that he took the cutting board and placed it on his stomach and took a large knife and stabbed the cutting board over and over.  You only need to live through one of those situations to realize that you have to help redirect thought patterns.  (Quite frankly, we have had too many of "those" experiences to share. )

Where do these types of redirecting episodes happen?  For us, it is most often at home.   Night time  right before bed he sometimes needs help.  We redirect with memories of places we have been and ask him to recreate the sight, smell, sounds.  This is a tool that helps.  However, any public situation causes anxiety for my son, so it does happen other places.  Recently, he was having a bad day in church.  During the last few minutes while we were almost ready to dismiss, I glanced at him.  (I am programmed to do this often.)  He was acting all crazy, holding his head, bobbing up and down, making faces, and I had to redirect.  I quickly touched my husband and we huddled around him, held him, and starting talking to him calmly in his ear.   He had so many rapid thoughts he was beside himself.  

People, many years ago I lost that "what will people think" mindset.  It doesn't matter.  What matters is helping my child cope with life.  We stay alert to my son's anxiety level, moods, and behavior 24/7.  It keeps him functioning better daily.  It keeps our home more at peace.  It keeps our family more at peace.  We use redirecting tools constantly throughout the day.  It's just a part of life for us.

Thanks for stopping by.

Lynne

Environmental Controls

Environmental controls are important when dealing with multiple mental illnesses, or even severe autism.  If you control the environment in situations, is helps keeps stress levels manageable for your child.  In our situation, it helps us keep our son functioning at the highest level possible on a daily basis.

Simple environmental controls are areas such as their bedrooms.  Keeping it in one color, not too busy with patterns, neat and clean, helps my son to function better.  The table where he did homework had to be clean and uncluttered.  These kinds of things are easily done, even if you have to put things in a basket quickly to provide a clean environment.  Other fairly simple environmental controls are things like vehicles. Make sure they are comfortable, have books, favorite things or technology to keep trips and stress at a minimum.  This is still important for my son even at 19.  

Harder environments can be obvious.  They are public places and venues.  Large arenas full of thousands of people is not where we take our son for any reason.  The stress is too much.

Other not so obvious places are extremely large churches full of people, office buildings or just large gatherings of unfamiliar people  The same effect can happen at a small unfamiliar house with too many people crowded together. Remember, an autistic child reads sensory input much differently.  His senses smell colognes, body odor, chemicals, pets and he sees patterns, lights, textures differently.  All of this can be disturbing and create stress. My son also has anxiety in situations with unfamiliar people.  This is why we have people over to our house, where he is familiar and has a place to retreat. 

Now, this doesn't mean that he is never in difficult environments.  We try to expose him to as much as he can take almost every day.   New places in public, new venues, stores, all of these new unfamiliar places can cause stress and slowly but surely, he is learning to overcome.  However, we aren't going to take him to a Titans or a Predators game anytime in the future because we know those are environments we need to control. We also opt out of invites to certain events due to an overload in sensory input, unfamiliarity with locale, and people.  Especially,if he is experiencing any signs of increased anxiety at home.  Basically, we have to manage his stress 24/7 which means we must use environmental controls 24/7.

When your child lives under so much constant bombardment of daily stress, I think it is in their best interest to establish some environmental controls.  In the end, it creates less stress for the child, which in turn creates less stress for you when you get back home! 

Again, not everyone understands this reality. It is what it is.  You do what you have to.  It's called survival. 

From my heart,

Lynne

What to expect when...

We have all seen the book "What to Expect When You're Expecting".  It is an awesome book for mothers to be! I read it.  However, there is no book out there like that for a parent on what to expect with multiple mental illnesses.  Each child is different. 

Here are some expectations that I would like to share with you from parent to parent:

 Expect unpredictability.  Even with careful, thoughtful planning, these children are unpredictable.  Just remember this.  Most of the time, a severe out burst, melt down, or mood swing will come out of no where.

 Expect Hormonal changes to create chaos.  Because each child is different, when puberty starts it can and often does affect medications.  Don't let anyone tell you differently.  When those hormone chemicals start changing in their bodies, their bodies react differently to how they are absorbed and released.  This is an issue you should bring up to your doctor. 

Expect Coping Strategies to change.  Sometimes the strategies you use to help them cope just abruptly stop working.  An example;  we used to use the brushing technique to calm him down even when he was older, and for some reason, it just noticeably stopped being effective.  Obviously age plays a role here, too.  Another area of strategy change for us was when he was about 14 years of age, I could no longer bring him back from a huge meltdown.  All the years that I had spent with him in sessions, being prime care taker, we came to quickly understand that his dad was the only one who could do it from then on out. 

 Expect the unexpected.  This was the hardest.   We had to unexpectedly admit him into a pediatric pyschiatric hospital the summer he was 13.  I didn't know to expect this kind of a thing.  We were in the process of diagnosis and just innocent I guess.  We were people of faith and never, ever expected this to be part of our journey.  I didn't sleep for a week.  The mental stress was almost unbearable. If only someone would have told me to expect the unexpected.  It sounds so simple, almost negative, but it is not.  We have gone through another hospitalization in the past year, it was somewhat easier, however, again I was caught off guard, it didn't make any sense. It doesn't make sense!  We are dealing with mental illness.  We just need to realize, unexpected things will happen.  


Thanks for stopping by,


Lynne

The Grief Process

You started it the day you heard the first mental illness diagnosis for your child.  The day the tests confirmed autism.   The day you had to medicate your child to give him quality of life.  

Your heart may have revisited step one and two  upon every normal childhood development milestone that looked  different in your child.

Every school form for special assistance, every camp or club questionnaire or information sheet you have to fill out,  every social security disability form application, or even the car insurance company who wanted to know if there were other driving age students in the house and why they weren't driving.  Nothing really prepares you for some of these unexpected questions. All of these situations shoot grief emotions into your heart.

Oh, and there is the constant changing of medications, because although you try something new to help, after months of slowly increasing the med, you find out it doesn't work anyway, and you slowly have to decrease it, stay off of anything for a week and then try something else the same way.  All during these long, exhausting months, your child's quality of life is horrible, daily living is difficult, this is when grief can come and just overwhelm your entire life.
This is the hidden story behind household doors with a mentally ill child.

Then there is the documentation you get from the doctors.  You need to read it and keep it for records and future applications for assistance, but it's hard to see in on paper, poor life expectancy, your heart wants to hope, but the written diagnosis seems worse sometimes and again causes grief.  

Grief Process revisited.

    1.  Denial and isolation

    2.  Anger

    3.  Bargaining

    4.  Depression

    5.  Acceptance

I think I stayed in a grief cycle longer because of our constant state of diagnosis that took 11 years from ADHD, Bi-polar disorder, then it was Bi-Polar disorder with psychotic episodes, then it was later defined as an Autism Spectrum Disorder, Bi-polar disorder and Obsessive Compulsive disorder with possible Anxiety disorder. 

The denial and isolation comes on fast with diagnosis. Some form of anger usually follows.  Be oh so careful not to dump this anger on your spouse.  Please, please know although this is incredibly difficult on a marriage, you can walk stronger together as a couple.  It can be done, my husband and I are going on 25 years.  Seek some marriage counseling, or get into a parent support group as soon as possible.

The rest of the steps happen, the bargaining with God, the depression and finally acceptance.  These steps can take months or even years to process through.

I never realized that I would grieve so much, at so many milestones, at so many set-backs, or walk though such depression or isolation.  I reveal this because my heart is to encourage those who may be in similar situations.  Again, I encourage you to be vulnerable, seek out counselors, friends, clergy who can assist you with this.  You need to be your best to care take and life coach a child with mental illnesses or autism, so please, tend to the issues of your heart's grief.

Sharing my journey,

Lynne

If you can read this...

We have all seen this little saying on a bumper sticker, 'If you can read this, you are too close.'  Well, that is the nice version. 

I can read my son's movements, gestures, sounds, faces, but it didn't use to be that way.  It has taken years to acquire.  Having a child with any form of ASD, (autism spectrum disorder) makes communication quite difficult and with severe forms, almost impossible.  I had to learn to "read" situations, behaviors, body gestures to learn what was happening.  In other words, I had to get close enough to know him better. 

Reading a situation to figure out the crazy behavior sometimes was just common sense.  Like the night my 6 or 7 year old boy was at a class in the gym when they came to get me and said,  "Your son is freaking out."  Upon getting to the gym, I quickly noticed lots of boy on both sides of the gym and a huge pile of shoes in the center.  I immediately knew what game they were playing.  Although my son usually handled class and even games, this one sent him into a huge melt-down.  Once the game was over, I went to grab his shoes, grabbed him kicking and screaming and headed to a quiet hallway. I sat on the floor, held him, then proceeded to wrap my arms and and legs around his to contain him and whispered comforting words in his ears.  It took 15 minutes to calm him down.  My son hated chaos, hated to be sock footed on a strange floor, (it felt dirty) AND couldn't tie his shoes. Seeing his shoes thrown into that large pile, was just too much.  That read wasn't all that difficult for me.

However, in another situation, his behavior was random, he would stand up and kick a file cabinet during a Sunday school class.  When they asked me about why he was acting this way, I had to start asking questions.  It only happened once in a while, but upon further investigation, it was only when a "new" teacher came in to teach his class that he didn't know.  This is when I realized there was usually a trigger to his behavior.

As he grew, gestures changed, so again common sense was sometimes obvious.  If he wouldn't touch something, he thought it had germs.  Simple enough.  However, if he wasn't getting dressed in proper time, there was usually a situation I had to read.  This still is the case.  It use to be obsessions about socks, the right ones; had to be WHITE, tube, with no seams etc.,  or shoestring loops on the shoes being perfect, or something totally different.  Now, it can be wearing the shirt that feels "right" to him. 

In the teen years while he and his older brother went on "adventures" (trips to mall, movie, or store)  and my son had random, strange behavior, I often had to have my older son rehearse the events to determine the behavior.  I had to get close to the situation to read what was going on.  It can be extremely frustrating for people to realize this disability affects his every moment.    Might I add, my son has the best big brother ever, and he has been his battle buddy for years.

Another simple common sense read was when his brother left for school.  My son literally shut down for days. ( I will talk more about the shut down in a later post. )  Changes like this; a death in the family, a move, school starting, school ending, are times of added stress and behavior will be affected.

People are amazed at the relationship my husband and I have with our son.  We can redirect his behavior now with a simple touch on the leg or shoulder,  a throat clearing, or even a look most of the time.   PLEASE KNOW, it has taken lots of work, determination to build this communication and TIME.  In those earlier years I wondered if I could ever figure out how to read him.  Please be encouraged that it does get better, and if you look back over long periods of time, you will see progress if you remain diligent.

Please note:  because we are dealing with multiple mental illnesses, there are still days, weeks, and seasons, we don't have a clue how to read him.   (I call that reality slapping me in the face.)

My advice, get close and read everything.  Use common sense, investigate, and ask questions.   It matters and it makes a HUGE difference.  It will be worth it.

Sharing my journey,

Lynne

Not everybody "Gets It"

   Being a parent of a child with multiple mental illnesses, I have learned a valuable lesson.  Not everybody "gets it".   This is the cold hard truth, my friend.  If your child "looks" normal, but acts differently, not everyone gets that it's a mental disability not a behavior problem or bad parenting.  High functioning autism, bi-polar disorder, obsessive compulsive disorder and any other mental illness isn't seen on the outside, and people can be so rude.  If you are a parent of a child like this, I am quite positive you have had more than one experience.  Often times, not even some of your family understands or gets it.

 Life with a child, children, teen, young adult,  or an adult child with mental illness will affect everything you do for the rest of your life.  It affects your marriage, your family, and your other children.   It affects what you do as a family, how you do things with your family, when you do things with your family and most certainly where you do things with a family.  Our son's mental illness has affected what city we lived near,  which dwelling we live in, where we work, and even where we go to church. It affected if, when, where and how we did road trips or vacations.  It affects everything!

 This type a child affects your social interaction, too.  My son is not able to stay alone, for more than 10 minutes, still at age 19.   That's even a stretch, so he is with someone 24/7.  Places that he feels safe are few and far between.  If he doesn't feel comfortable with someone, it is not worth leaving him with them.  It causes more stress that is it worth.  People don't always get that.  But, when you live with someone with an anxiety disorder or mental illness, after years of experiences and the stress you live with 24/7, you learn not to create unnecessary stress.  Daily life creates plenty for you.

Friends often leave you, when you aren't able to socialize.  They may not get that you can't go to their house or leave your child with someone, especially when they are older.  It's added stress to a parent with an older child to arrange "care" even at simple dinner outings or church events.  So unless it is "family friendly", you have a hard time making it work.  If you are like me, sometimes, too many stressful days cause me to hibernate or isolate just to survive and get some respite.   That pulls me out of social circles and away, and it's easy to be forgotten.   In other words, your friends don't always get it.  

If I may encourage you, work hard not to allow yourself to drift away from your friends.  I understand it is easier, especially with all of the hectic schedules, appointments,  therapies and utter chaos life can be at times.   You are weary, worn-out, and so stressed just to keep it together and then to have to share and trust that someone will "get" your situation is more that you can deal with.   I am just now starting to be vulnerable after 15 years of the hardest, agonizing years, but it took me this long to have the courage.  I am still working on not isolating, but I am trying.  I guess I was too afraid to show the real me, the one who struggled with hope, who felt ever thing she did was wrong, who cried endless tears, who crawled in a closet in the backroom when no one was looking.  Yes, that was me.

So, keep your friends close.  Share, invite them in, and give them a chance to "get it".  Share the tears, the grief, and the agony of your heart.  Be real.  Be vulnerable.  Although some people don't understand or "get" the incredible load you carry with a mentally ill child,  you will find that your true friends do and they want to be apart of your life and help bear your burden and lighten your load.  If you find someone close to you who doesn't get it, just lower your expectations of their actions and do what is needed and let it go.  Remember, not everybody gets it!

But, I DO!

Sharing my journey,

Lynne

A personal experience

I thought I would share an experience we had during the early stages of diagnosis and medications.

When my son was four, we went to a professional private counseling organization and he was tested for about 3-4 hours on everything from IQ to specific tests used for early detection of various things.  This is where he was diagnosed with ADHD.  Usually, that diagnosis is not determined until about 6, however, he tested with many signs.  So then, we were advised to go to a pediatric psychiatrist.    The counselor thought it would be necessary to get another opinion and help if my son was to ever succeed. 
 We finally met with the pediatric psychiatrist.  I must say I wasn't impressed.  She had made up her mind before we ever me her on what she was going to tell us to do.  She gave us free medicine.   Okay, we were so torn up about her hasty appointment.  Never even thought about using drugs for our four year old son.   Our son was hyper, but obedient.  He was excited about life and jumped up and down, but still waited in line.  Upon expressing these truths to her.  I guess it showed our doubt in her treatment, because, that is when she told us the biggest lie we ever heard!
                  "Your son will never learn anything without being medicated"  
We did return to her office, why I am not sure.  We did try one small dose of something because we were just overwhelmed and wanted to help our son.  After taking the medicine, my son went into a fetal position and stayed there the rest of the day.  I think we tried 3 days and then something in me broke.  I realized that I am the parent.  I could not accept negative comments from arrogant doctors who thought  their way was the only way!  I chose to believe that my son could learn.  I knew he was learning new things everyday.  He may not have looked or acted like everyone else, but he didn't need medication at that time to assist his learning.   


Decisions have to be made.  We chose to go without medication for our son for several more years, actually about 8 more years.   Yes, he was a hyper, but he had a brother 19 months older and they were all boy.  That's normal!  The biggest problem I had was keeping red food coloring and sugar away from him.  Hawiian Punch and Brownies were the favorite snack at a group class he went to on Wednesday nights!   UGH!!  I have videos of him literally bouncing all over my couch for an hour after class. 

Decision making for your child on treatment while you are in turmoil over what would be right is so difficult.  Seek wisdom from others whom you trust, but know this.   You were chosen to be the parent, you know what feels right for the moment.  Go with that.  You will know when things change and something else is needed.  

The Important Bubble - Find it!

What is the "important bubble" ?  By definition, it's a protected, exempt, or unique area. My advice today:  You need to find your child's bubble. 

This is an area or space that they feel protected, most comfortable, at peace.  Obviously, it will change throughout their lifetime.  For my son while he was younger, it was his bedroom with all his leggos, and he had LOTS AND LOTS.  A secluded room, quiet, familiar, clean ( not cluttered with extra things)...no unfamiliar smells. (Something as simple as air freshener can set off a reaction for an autistic child)    For someone with sensory integration issues, a room can't look busy with lots of prints on the curtains, walls, bedspread.  Colors matter, you may want to do some research.  We used a shelf system and tubs with lids to keep everything organized and looking neat.   I found out early on that he had no place of peace in his room if it was messy.  The stress of clutter was overwhelming for him.  Yes, you need to teach them to clean up their own mess, however, you also need to find their bubble.  Taking the few extra minutes to help my son clean his floor and put things into place, created an area that he could go and spend time in peace.  Also note, my son's bubble was and still is only possible when I am at home, physically seen.  Your child's bubble is probably not going to be anywhere else but home while you are there. 


Use the bubble!  Take a breather.  If you have a child like this, stressful days run into weeks, months, and then years.  Your life in chaos pretty much 24/7365.    SO, please, if your child is in a happy place for 5-30 minutes, or even 1 or 2 hours, use the bubble time to purposely relax.   Drink a cup of tea, feed your mind, read a book, talk to a friend of the phone, write in a journal, build up your spirit.   Your dishes, laundry,  and cleaning do not build yourself up or rejuvenate you.   This is a long tedious journey, my friend.  When you find the bubble, use it well, you will need it.  Trust me, you will.

 Lynne