Wednesday, September 28, 2011

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

Monday, September 26, 2011

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








 

Thursday, September 22, 2011

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

Wednesday, September 21, 2011

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

Monday, September 19, 2011

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

Sunday, September 18, 2011

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

Friday, September 16, 2011

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

Thursday, September 15, 2011

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

Wednesday, September 14, 2011

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

Monday, September 12, 2011

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



Saturday, September 10, 2011

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

Friday, September 9, 2011

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

Thursday, September 8, 2011

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

Wednesday, September 7, 2011

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

Tuesday, September 6, 2011

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.  

Monday, September 5, 2011

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








Sunday, September 4, 2011

Forecast for your sanity

One of the first coping strategies we learned early on was forecasting.   To advise beforehand your plans, changes in routine, or what to expect for a child.  This lessens the anxiety of changes for the child.

It seemed like I couldn't even get out of the house, at times.  My son put his clothes on in a certain order, so if he didn't have everything he wanted to put on in his drawer, TRAUMA.  Socks went on before pants and had to be white, hit a certain place on his leg, and then the pants... and so on.  There was no hurrying him.  If there were no socks in his drawer, he just wouldn't get ready, he would sit there unable to cope.  It took me a while to figure out what was going on and why he wasn't getting ready.  I have to admit, I probably yelled at him out of  frustration try just to understand him.   Leaving quickly for any reason, was just not possible.  Not only did I have to plan 2 hours in advance to leave, I had to forecast anytime normal daily routine was broken.  I learned this after many stressful, frustrating mornings of trying to go somewhere. I learned forecast after many, many days without it!

This truly works.  We still forecast.  The unexpected circumstances of normal life for most ASD, (Autism Spectrum Disorder) children, teens, adults, cause tremendous overwhelming anxiety.   I have used it for everything;  daily life, scheduled appointments, trips, etc.

This is a tool that should immediately decrease anxiety sparked by unfamiliar or different situations from the normal day.  There will obviously be days and times in life when you can't forecast what will happen, that's just life.  So forecast, as much as possible, and hopefully it was reduce anxiety for both you and your child! :)

Thanks for stopping by,
Lynne










 

Saturday, September 3, 2011

"There will be days like this"

That is a familiar phrase that our mom's usually say.

Believe me, you will have those days.   I see moms having those days at the autism clinic, at the grocery store, and in other public places.  Been there, done that.  Still there.  Still happens.  You think you might get a reprieve, things are seeming to work, getting into a routine, everything is livable, and then out of no where, your child wakes up and NOTHING is right.  I mean NOTHING...  it's trauma drama from the moment they wake until they finally drop off to sleep for the night.

 I use to hate those days.  I would go over and over what happened, what he was exposed to, what I did wrong, is the therapy we are doing wrong, should I be doing something else... It was TORMENT.  Here is my most important tip I have for you. 

                     THERE WILL BE DAYS LIKE THIS! 
  • Days when the all the outside input for an autistic child is just too overwhelming to deal with
  • Days when a bi-polar child's chemicals are just out of whack, maybe adrenaline, maybe hormonal, may be they are overtired, who knows... it's a mental illness.
  • Days when an OCD persons thoughts are so rapid they think they are going crazy.
From one mother to another, one caregiver to another, don't add stress to the day by tormenting yourself with thinking that you caused this by doing or not doing something right.  DAYS LIKE THIS JUST HAPPEN!  Expect them.  You adjust your expectations, adjust your schedule, sleep when they sleep, and realize, tomorrow is another day.  Usually, it passes and the next day, they will wake up able to cope, at least a little better with life.

As sure as the sun comes up in the morning and sets in the evening, this too shall pass.

Have hope,

Lynne













"Doctors"

That word evokes either a sense of calm or terror, depending on your situation.   My advice is that it is worth pursuing  one until you get the passionate one who takes the time to assist AND realizes although you don't have a medical degree, you have important input on the child that no one else can have! 

We have had them both.  The bad ones and the exceptional ones.  How to tell a bad one.  They have  slotted  5 minutes for you and they give you 3 minutes and never look at you.  NOT!

How to tell a good one. First, they connect with your child.  They listen to your input on what is happening.  They run late sometimes because if you need them, they are there for you. ( I never mind waiting when I know my doctor is helping a parent with a child who is having a difficult time such as we are!)  AND, in the case of difficult seasons, they give you their personal cell number!  I know that one is hard to believe, but it is possible.   The first time I had a doctor give me his number, I about fell over.  I did not abuse it for every situation and that created a great deal of respect between me and the doctor.  One in the Chattanooga area even carried a satellite phone to Cuba and told me if I really needed him to call!  I actually had to once. 

I do have advice regarding this great opportunity, though.  Although it is great to be able to talk with the doctor at all times of the day, they have lives too!  Making medication changes over the phone must be done carefully. 

If it is simply stopping a med, that is not so bad.   Or making a decision for hospitalization.  But medication changes need the doctor's full attention.  He needs to be able to recall allergies, reactions,  doses, etc and if he is pre-occupied, it can be really frustrating.  My doctor now, usually has a handle on what my son is on, what he has tried in the past and the doses.  When a change is made over the phone, he rehearses to me everything my son is on and then processes what needs changing out loud on the phone.    Previously, however, with another doctor, quick decisions regarding meds were made on the phone that probably needed closer attention and determination.  Lesson learned.

So, in conclusion, search out the best.  Get recommendations on great doctors, who are passionate and you can communicate with easily, via phone or internet.   Use wisdom about how much and when to call.  Use your gut instinct to decide if when you call, the doctor has your full attention and can make good choices for your child over the phone. 

You may think this is a little radical, but like I said before,  you are your child BEST advocate.  Doctors are human and make mistakes.  It pays to be careful, wise, and informed. 

Have a great holiday week-end.
Lynne

P.S.  If you need a good recommendation in the Chattanooga or Nashville area, email me and I will send you some. 






Friday, September 2, 2011

The Diagnosis Process

Hello Friends,
 
I thought I would shared about our diagnosis process  and it was just that, a very long process.  How did ours starts?  Well, it was a precious nursery worker  at a church who bravely and lovingly suggested that she was noticing signs in my son that might indicate a problem.  That began our 11 year journey of diagnosis.  Long story, really too long to share, but here are the highlights. 

Here is the diagnosis by age and professionals:
  Age 4-  ADHD
 Age 9 - Bi-polar Disorder
Age 12- Bipolar Disorder with psychotic episodes
Age 15 - Autism Spectrum Disorder, Bi- Polar Disorder, Obsessive Compulsive Disorder,
              Anxiety Disorder.
That last one was a game changer.  In between, there was concern that he was schizophrenic. 
The details don't really matter in where I am going with this post, but what I learned is. 

#1)  When you have a child with difficult behaviors, as soon as you see them, start a journal!

  Boy, do I wish someone had told me this early in our journey.  EVERY doctor, therapist you encounter will ask you specific behaviors, even when he was evaluated at Vanderbilt when he was 15, 16, 17, they were drilling me about his behavior as a baby and especially when he was 4 and 5. 
Looking back, hind sight was helpful, but in those early years, if I had kept a journal, we might have been able to confirm diagnosis earlier.

Document mood swings, aggressive behaviors, sensory issues; i.e. sensitive to certain material, sounds, light, and other sorts of things.  For example, my son would only wear soft t-shirt material, white tube socks, and loved the feel of silky slips in my drawer.  Oh and he hated tags in the back of his shirt. He screamed at loud noises.  I didn't realize these things were called sensory issues, but you live and learn.   

#2 ) Keep a accurate record of all the tests done, by who, where, doctor etc.  We moved doctors many times, not just because we moved locations, but some doctors would dismiss us if they couldn't help us and then we started the process all over again.  They don't keep all those records very well either. In the later years, they wanted to know about every test result for a proper diagnosis. 


#3)   Research and try it all.  We did.  We tried allergy testing, shots, food allergy testings, and changing his diet drastically.  But ultimately, to enhance quality of life when he was in adolesence , we had to use medications.  Our wonderful developmental pediatrician said to me the five words I still loathe, "It is a long process".  Finding the right combination of medication for your child.  Oh, was he right.  And again, JOURNAL the effects, the names of drugs, dosage and how long it was used!! Because, every new doctor or person looking at the diagnosis wants to know every drug that has ever been tried and it's effects.  Not all of the doctors keep those records, and you will want to know.  There have been many situations that have come up in our lives with doctors or hospitals wanting to change a med back to something we have tried years ago with terrible side effects.

#4) You are your child best advocate!  Keeping accurate records and asking questions of every one who is involved with your son is key to helping them become all that they can be.  Find doctors who are passionate about helping your child, and leave those who don't seem to care.  And follow your gut instinct.  My momma taught me that one, but I have used this gut instinct so many times throughout my son's life. 


I hope that this helps. 

Until we meet again,
Lynne






To know it's a journey is the first step

Greetings to one and all.

Although I have been thinking about starting a blog and share about my long, dramatic journey as a mother of a mental ill child, I have had great hesitations and doubts.  Finally, I feel it is time to share my experiences with others in order to encourage those who may be walking through the same or similar journeys in this life.   One of the first things that I have had to accept with a child who was clinically diagnosed at age 4, was it's a journey.  A journey by noun definition is traveling from one place to another, usually taking a long time, or progressing from one stage to another.  That is definitely how life is for a child who is developing differently than normal and has either autism or any other mental illness.  Some stages of development take longer, much longer than others.  Some progress is minimal and if looked at in short periods of time seems like nothing has changed or improved, but if looked at in longer periods of time, like years, can be noticed ever so slightly.

  For me, I wish someone would have told me that it's a journey, you do travel through stages, but some may be longer than others.  The other thing I have learned is that my journey was not designed to be like everyone else.  Yes, my child is different.  Yes, some people can put unnecessary pressure on you because they might look, learn, act different.  It my journey and not everyone will understand it.   You stay close to those who do or at least try, and you move on from those who don't.  They will add extra baggage to your journey and weigh you down and actually impede your progress.

For those on a journey, reluctantly starting a journey or about to embark on a journey, be encouraged, a journey by verb definition is to travel.  You will move from the place you are in.  If you are in some of the places on my journey that I have been in, that is hope enough to go on.

Until we meet again,
Lynne