Tag: autism

I Need To Keep My Head Up

drowning picture

This past month I have felt like this a lot.  I have felt like I am drowning.  Yes I try to be the optimist, the glass is half full type of girl.  I just can’t keep that up all the time.  I can’t keep the smile on my face that everything is fine and everything is great.  I am the glue that tries to keep it all together in my family but lately I am having a hard time doing this.

I finally confided in my husband and told him that I am really having a hard time keeping it all together lately.  I feel like I am drowning and I am sick of keeping the smile on my face when I miss half a conversation and have no idea what someone said to me when they walk up to me at school or church.  I am sick of working so hard to understand all that is being said.  I am just sick and tired of life being hard.

Everyone has troubles in their lives and I try not to ever be a person that says well my troubles are worse than your troubles.  I hate when someone says, “At least it is not cancer.”  Yes I am glad of that also but guess what hearing loss, a son on the autism spectrum, anxiety, and so on isn’t that great either.  Everyone has trials in their lives, let them grieve and work through their trials.  Don’t discount it that a problem isn’t big enough, in their life it is a mountain.

My husbands employer has this new health insurance hoops you have to jump through.  We have to do an online health assessment and then talk to a health advisor.  I am fine with this until they talked to me about the stress and anxiety aspect.  1st off they knew of the hearing loss since that was one of the questions I had to answer.  They asked why I have stress.  I told them I walk into a building and I always feel off guard at first if I will understand people talking to me and understand what is being said there.  Their answer was deep breathing and I just need to believe and tell myself that everything is good and I can hear it all.  REALLY- I was hoping for some relaxation techniques.  I informed them I can’t make the hearing loss go away so in reality I am not going to hear it all.  They came back with I can tell myself I hear fine and that will take care of the stress.  Wow I didn’t know how to respond.  If this is what the insurance companies are going to tell us we can will all our troubles and our worlds troubles away.

I work at the school as a substitute teacher.  It seems to be getting harder and harder in some ways.  I like certain classrooms a lot, I like the high school.  I know I can hear decent in them and I know I won’t run into problems.  But the hallways, lunchroom, and the elementary school I just want to run away.  I feel like the air is being squeezed out of me.  I hate it and there is no way I can hear anything.  The elementary school is like a horror movie for me.  Little voices and always a sea of background noise I just cringe going in there.  This past week I was to work at the elementary school Monday and Tuesday.  I felt sick all weekend even thinking about these two days.  I don’t know what my negative feelings did but we ended up getting an early November snowstorm, we received over a foot of snow.  SNOW DAY on Monday and two hours late on Tuesday.  My prayers were answered!!! I hate that I dread going to work or certain places.  I hate that I have this sense of failure of events coming up.

I just need to get over these feelings.  I will, I am not worried about it.  I will learn some new coping techniques.  I am trying to learn speech reading which I really believe will be a huge asset to me.  I need to reach out to the friends that I know will be there when there is a bad day and understand.  I need to speak up, I need to say what I need instead of saying sorry like I was a problem.

It is going to be a long winter I am afraid.  This will be my winter to learn new things.  Maybe just maybe when spring comes again I will have some new skills and instead of this drowning feeling I am having I will be having a sense of renewal, just like my tulips coming up to see the sun.

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Plot Twist

plot twist

I like order, and I like things planned out whether it is on paper or in my head.  This summer was spent trying to figure out this next year of my life.  What would I do for a job, I longed for a change.  To make a difference in someones life not a sub that floats in and out each day different.  I tried for other jobs and nothing seemed to work out.  I finally took a job and I was excited for it.  The job ended last week after I quit.  I was not disclosed some pretty important information and for that reason I quit.  I felt upset, scared and betrayed.  I had this year planned out in my head and now it is all gone.  I took the week and thought pretty long and hard of what happened and I believe I can just say PLOT TWIST and move on.  Life didn’t go how it was all planned out in my head.  God is the only one that can know our future and he knew this turn was going to take place.

I went back to subbing last week and spent two days at the school.  It felt great catching up with the kids and hearing what they had done for their summer vacations.  It was nice to see staff and say our hello’s.  It wasn’t how I was expecting to spend those days but it was familiar and comfortable.  I still don’t want to be a sub forever.  I need more of a purpose a beginning and end of what I am doing to know that I made a difference on someones life.

Chad, my husband, said to me this weekend “Sara you are pushing 40 it is about time to figure out what you want to do with your life.”  That is so true.  I went to school, then graduated college, obtained a full time job.  Never something I loved but it was an income my desires were to be a wife and a mother.  I was successful on that front and that is what matters most in my life.  I feel this pull now, I am in my research phase now of different career choices.  I get a little nuts when I find a topic I enjoy.  I will stay up till the wee hours of the morning, reading, and making notes.  I am starting to put some feelers out will be doing some work on some different ideas in the next couple weeks.  Maybe it is not in the stars for this path to open up but we will just have to see what happens in my life.

Remember when something happens that you weren’t expecting just yell Plot Twist and move on.  I have done that with moving, having a child diagnosed on the Autism Spectrum, hearing loss, and jobs.  Life takes twists and turns you never expect.  Yell Plot Twist or you will dwell in these turns that you will never see the beautiful clearings that you are about to come to: Living in the beautiful prairie, having a son that has taught me to look at the world a little different, meeting friends and learning so much in this past year, being back at the school that is familiar and I am needed.

Life just isn’t a straight line it is like a river that meanders and the slow curves that the water has carved in the banks.

meandering-river

My Yellow Belt Miracle

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Look at the attention that my dear son, Henry, is holding.  It is amazing to me and that is the main reason this picture had to be taken.  You see my boy hasn’t always sat like this let alone be in a room of people watching him.  I thought I would take this opportunity to shed a little light on how Henry used to be till now.  The problems he has had are not gone totally but they are handled and he know how to hold himself and his emotions in check….for the most part.

Henry was born 5.5 years ago and he was just the cutest little thing.  He was always very reserved as an infant and as a toddler.  He was also a sick little guy.  He would spike a fever so easily and so fast.  It was about every 3 weeks he would spike a fever between 105-106 degrees.  He and I spent lots of time in the ER and the doctor’s offices.  It was determined a good year after this trend started that he needed his tonsils and adnoids out.  Thank god he has never spiked a high fever again since that surgery.  After that surgery attention was turned to could he hear? That was the big question, being past the age of 2 and not babbling or really making any noises.  So after more paperwork and talking with the doctors, and school district (early intervention) we went to an audiologist.  Henry was found to be right at the line for moderate hearing loss.  Being at a moderate hearing loss myself I know now that would not be easy to learn speech and interact.  Henry had glue ear and had surgery to remove that and put tubes in and they also clipped his tongue at that time.  His hearing has gone to a mild loss and that is where he is still at today.  He entered ECSE (early childhood special education) at the age of 3, Occupational therapy, and speech therapy.  He has made huge strides in the past couple years.  During that time was full of  appts, worry and constant love for him.  Henry had a grand mal seizure at school one day so that was then a trip to a neurologist, EEG, MRI.  It hasn’t happened again and hopefully will not.  Henry was also diagnosed with PDD-NOS during the time of preschool.  PDD-NOS is under the Autism Spectrum umbrella.  Henry also has SPD, sensory processing disorder.  I believe this is what has affected him the most.  From hating the sound and feel of water falling on him.  To having complete meltdowns walking into a store or restaurant that is full of people, bright lights and loud sounds.  We still have moments this all comes back but it is getting better.  He still has huge issues with food (most things are OH SO YUCKY).

This brings me to Friday.  My handsome son is in kindergarten, speaking at his age level, and interacting with friends.  He is in TaeKwonDo and had a promotional test Friday night.  I get so nervous and proud at those tests if it is for Henry or Greta.  I am so proud to say Henry PASSED his test.  He passed all his material on the first time.  He ran across the gym and while doing a flying sidekick he broke a board!!!! He did it with people watching him and he did great.  So proud of both of my kids.  I think of two years ago and never in a million years would I think we would be here today.  Miracles, hard work, prayers, and help do work.  I know I have a little boy with a yellow belt living in my home as proof.

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ADVOCATE

advocate

noun |ˈadvəkit|

a person who publicly supports or recommends a particular cause or policy : he was an untiring advocate of economic reform.

• a person who pleads on someone else’s behalf : care managers can become advocates for their clients.

• a pleader in a court of law; a lawyer : Marshall was a skilled advocate but a mediocre judge.

verb |-ˌkāt| [ trans. ]

publicly recommend or support :

Advocate it is a word that I hear a lot and have my whole life. We should be an advocate for others and advocates for the weak, advocates for our animals. It is a word that can bring people together and can cause tempers to flare and tear people apart.

When in high school and college I was a member of the Sierra Club and PETA. I was an advocate for nature and to animals. As I grew older my heart didn’t turn my back on those items but my life changed directions. I became an advocate for my family and for my children. Just to have the best shot in life in general. I became an advocate for kids with Sensory Processing Disorder and Autism.

When my son was little he was very sick. We had him to the doctor and ER all the time. He would spike 105 degree fevers at least once to twice a month. I tried with our local doctors to do something and finally an ER doctor said to us, you need to be an ADVOCATE for your son. You need to push to get him the help he needs so this can stop. I stepped up to the plate and pushed every button and put my foot into every door I could to get him the health care he needed. I was his advocate and still am. I am the one that goes to the school, meets with the doctors and therapist. I am the one sitting in his IEP meetings I am his ADVOCATE and his mother.

My question comes to why is it hard to be an ADVOCATE for yourself. There are times in everyones life when something could be done to make something a little easier. In my experiences of life asking for yourself is hard. It is hard to step up and say I need this or could this be done for me. I have run into some of those roadblocks recently and my husband just says, “Stand up for yourself and say what you need.” That statement is so much easier said than done, at least for me. This needs to be my resolution for my life. As much as I am an advocate for my family and what needs they may have I need to turn the mirror around and ADVOCATE for myself also. I need to let my wall down and when I do need extra clarification or something written down I will ask for that not smile and pretend I heard what was said. I will not be ashamed to say “I am hard of hearing can you please repeat that or rephrase that” I will ask for what is right and fair. It sure won’t be easy for me to do but I will try.

If no one is going to do it for you, you need to do it for ourselves. We all are human and we all deserve to have the best life can offer. A person has to have a purpose. We need to be an advocate for someone or something. Pick a cause something that is near and dear to your heart. Be an ADVOCATE.

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Busy Day

Today was one of those days where you just fall into the couch in the evening and take a deep breath and just think of all that was done in a 24 hour period.  My morning started at 5am when I had two great kids dropped off at my house to take to school in the morning.  Helping a friend out who has helped me so many times.  Then I had to drive to a neighboring town.  Living in the middle of no where has advantages and disadvantages.  One disadvantage would be a near 45 minute drive to any medical specialist, any major store, or restaurant.  Well today was another audiologist appointment.  I still could not hear anyone who was talking quietly or softly.  I am not sure if I could when I could when I got the hearing aid or did my hearing slide a little more down.  I am guessing the second of the two is what is happening.  Well I had it upped two more levels and I think it will help.  Technology is a beautiful thing seeing everything charted on a computer screen is really a cool thing.  Maybe I am a nerd when it comes to that stuff but seeing where my hearing lies on the chart and what is being picked up and by how much is kinda cool.  Left the office hearing a little more of the environment that I was missing.  Wow you can hear jingling keys in your pocket.

Stopped by Target and you never know what you will see, or have the impulse to buy.  I saw a friend from town shopping on her own also today so we shopped together and then out to breakfast.  What a nice surprise.  We talked that if we would have tried to plan this meeting and breakfast it would have never happened so nice to have a surprise like this.  A great friend that we can talk freely about Autism, Sensory Processing Disorder, school challenges, and life challenges.  So nice to know your not alone in the world.  A few more stops than the drive back home.

You know I said I wasn’t really in the Christmas spirit well I figured we better put a Christmas tree up so that was our after school project.  The kids were nuts to get that tree up.  Well they think it is the most beautiful tree they have ever seen.  ME- It is awful.  It is a cheap small artificial tree that is so misshapen it should be in the trash can.  Only half the lights worked so it is very pieced together and I guess a tree only a child could love.

It was a busy day but a day of some new hearing, breakfast with a friend, and an ugly tree that has children in awe.

Night Silence

I find myself compelled to write about things that I wasn’t planning on writing about in this blog. But isn’t that life the unknown the ever changing.  Has anyone ever had everything planned out and it really goes that way? Maybe some but was it interesting then? As I sit down to write this I can’t get over how quiet it is in the house.  Everyone is in bed and my hearing aid is out for the night.  It is total silence.  There is no dripping faucets, no creaky floor boards, no furnace or fridge running.  I see an occasional car drive by but no sound.  How strange this is but at the same time amazing.  How you go into life and then the unforeseen detour on the road takes you on another direction.  So we are in for a major snow storm some saying upwards of 10 inches. Now the power just went out.  I am not kidding you can’t make this stuff up.  See the unforeseen always seems to happen.  So when this new path comes up what are you to do?  Learn to deal, make the best of it, find the positives, I guess I am still trying to figure that out.  I know my drive to write has been heightened and I want to go with that.  It is a wonderful outlet and maybe it will go somewhere someday.  Listening to music has been an obsession of mine for the past few days.  I don’t know why, I am a tv person. Love having the tv on as background noise and it is on all the time.  I haven’t turned it on in 3 days.  Kids think I am going nuts. I wonder why the music, am I somehow worried someday I won’t hear it?  Not sure, it has to be turned way up but I am loving it lately.  Life is an always changing organism. I am finding that out a lot in the past few years. With a move out to the Prairies of MN, with a son who receives an SPD and Autism Spectrum diagnosis and now hearing loss.  Always changing and we have to be receptive maybe not willingly but life goes on and we want to go with it.