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