Tag: Sensory Processing Disorder

Thursday

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Oh how I hate the afternoon and evenings on the day of Thursday.  You might wonder but tomorrow is Friday? Why is this one day of the week such a thorn in my side.  It is because of my son, or at least the what this night does to him.  He get off the bus around 3:15 and there is a constant whiny sound you will hear till about 6:30.  This whining will then lead to stomping then crying then sobbing till we can’t whine anymore.  Yes it is annoying and I hate it but my heart breaks at the same time.  Henry is in sensory overload by Thursday night.  Have 4 days of school, 2 nights of TaeKwonDo, and a night of church have reached their limit.  He has tried to hold all his feelings, emotions inside and by day 4 he is a bear.  He explodes and we know to expect it now.  He is passed out now and I hope he sleeps till morning and then tomorrow is a fresh day and Friday is always a fun day.  He gets the rest his body and mind needs and we can get up and face another day.  

Now I had a great Thursday.  I needed to drive to the audiologist which is about a 40 minutes away.  It was a follow up appt and to change some programing on my hearing aid.  I knew it would be a short visit so make it worth the drive.  I picked up a friend and we were off.  We shopped without kids, talked, and stopped to eat a meal.  I wish the world could listen to us at a perkins table.  We could run the world with such ease.  It isn’t complicated we have it all worked out, just listen to us.  I am glad we had this time together we made it a great morning.  

We all have our Thursdays.  Times when we want to crawl into a ball and cry and shut out the world.  The world has a lot of pressures and they can come in at all sides.  My heart breaks that my son feels all those pressures and they all soak into him till he bursts.  He is sleeping so calmly now.  My prayer for him is a restful sleep that will take all the stresses and anxiety away, way too much for a 5 year old.  

I hope you all have a restful Thursday night and you can all feel fresh and new for Friday.  

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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

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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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Small Victories

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When you have a child that has SPD, Sensory Processing Disorder, you learn to look at the world a different way.  My son Henry has SPD.  We are making great strides in some areas, and there are other areas which are a battle for him which makes a battle for the family.  

To have a child that screams like he is getting beat when water from a shower or the wind hits him in the face.  These are two things that hurt him physically to the core.  I get frustrated over this water thing.  Here is my son that will jump off the diving board with no assistance in 9 feet of water over and over and over but hearing the shower running brings on a full panic attack with hives.  Food is our big stumbling block in our home.  Everything is yucky, everything smells yucky and most of the times my son won’t even be in the kitchen with us when we eat.  I feel so bad for him and I know the smell of bread, or a roast makes him feel physically ill.  Taco’s are his favorite all around.  He loves taco meat and he loves salsa will eat it by the gallon.  Taco night is a great night in our house.  No gagging and no crying.  My son also craves sensory input.  What is that you ask? He will bounce of the couch, crash into walls, crash into me- anything to get that deep pressure input his body is craving.  He loves to spin and spin and spin till his poor mother is feeling like she just got off a tilt a whirl ride.  He will hit his forehead with his hand, or a toy, or even his taekwondo belt.  He is craving that pressure.  

With the sensory challenges we have in our home last night was a night of small victories.  It was just Henry and mom last night and his hair was getting a little unruly.  It actually looked like he was growing horns on the top of his head.  Not a good look.  Now cutting hair is on the same order as a shower.  We really can’t go to a shop to have it done it takes to many people to calm him down and it is just to much on my nerves also.  So I cut his hair at home.  This is usually my husband holding Henry and Greta trying to calm him down as I quickly use the clippers to cut his hair.  Last night I got the crazy idea I would do this alone.  So Henry agreed and he sat so good and he listened to Frozen music on his iPod.  He did WONDERFUL.  His haircut looks good and there wasn’t one tear shed by either of us!!!  I then explained I needed to get the hair off his neck and back but I would have him stand in the tub and I would just pour the water on him.  That got a few tears while doing it but no major meltdown.  We ended up celebrating by a great big bubble bath with Frozen music blaring through the house.  He was happy, clean and a new haircut.  Now that is major success in my book. 

When you have a child that looks at the world through different eyes you need to train your brain and eyes to look to see things a little different also.  It might not make sense to you, a neighbor or the woman casting a frown your way at the store but it is your boy and you will protect him and nurture him anyway you know how.  

Happy New Years

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Happy New Years to everyone out there.  Did you make it to midnight? Our family didn’t make it till the new year.  That was a big thing when I was younger make it to the stroke of midnight.  Now that I am getting so old (or at least feel old) I made it till 11:30. Did I try to push myself that last half an hour, nope just went to bed.  

This holiday season has been a lot of togetherness as a family.  My kids and husband both had 2 weeks off this year.  Yikes that is a lot of time together.  We are a week and a half into it and we are all still alive and no major upsets.  We haven’t done a ton since we got home from Christmas.  If you have a child with Sensory Processing Disorder you know a lot of change in routine will disrupt your whole life.  We have been hearing everyday that He should be a school.  We shouldn’t be having supper so late (New Years Eve) that just isn’t right.  Dad should be at work not home, did he get fired, are we going to the poor house because he has no job.  There is a lot of anxiety that goes with his SPD.  New toys and new movies are helping him have a good time at home.  My daughter has been busy training this break.  She is going for her 2nd degree poom (a jr black belt in TaeKwonDo).  So proud of the kids going for the promotion. A big opportunity and a lot of work to get to this point.  

So our days during this break in this sub zero weather we are keeping busy by going through our closets, taking naps, watching movies, and playing with new toys and trying to figure out what new songs we should buy with our iTune cards.  The kids and I have been trying to learn ASL( American Sign Language).  We are watching Signing Time and looking through books.  Any other suggestions, they will be welcomed.  Pretty easy couple weeks I am sure the new year will bring in the craziness of life.  School will start again, work will be going full force but for now we can just enjoy ourselves.  

The Day of my Son

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So today was the day of my son from morning till night.  The day started out today with an IEP meeting for my son.  I am so happy with the progress Henry has made this year so far.  We still have some issues but most of the conversation today was the positives.  So we need to work on writing and reading so basically letters.  He is wonderful at numbers and the testing really showed that strength.  When Henry was very young he told me numbers lived in his tummy.  I think those numbers are coming out.  He loves math, patterns, and counting everything.  The big needs are his sensory needs.  I was told by each person that tested my son that his shirt, hand, or a chewy was in his mouth at all times.  I was also told he was constant movement.  Well that was no shock to me I live with him.  Another concern brought up was his hearing.  He has tested the past couple years at borderline hearing loss.  We had a deaf/Hard of Hearing teacher at the meeting so she explained what he heard and how.  She also explained how this hindered learning even having borderline hearing loss.  So the question I was dreading came out.  Is there any family history of hearing loss with Henry.  Well I had to let my secret out.  I don’t know why I didn’t want to say it but I had to say YES I have hearing loss at a moderate loss.  I know what it is like to not be able to hear a conversation or concentrate so hard on someone talking it is physically and mentally exhausting. So everyone together is going to really watch him and make sure he can get the best out of his education.  It was a good meeting and I think it will all be good.

Tonight was Henry’s orange belt test for TaeKwonDo.  He didn’t pass tonight but did great.  He sat at attention so well!! He even broke his first board.  He did great and only needs to pass one item on Wednesday.  I was very proud of all the kids there tonight.

It has been a day of being proud of my little man.  I am sure there will be many more of these days-today was a good one.  2013-12-16 18.52.53

Busy Day

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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

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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.  

SLEEP

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Ever have a craving? Maybe chocolate, or soda or if pregnant pickles and ice cream….I am craving SLEEP.  It has been a couple weeks of maybe a couple hours of sleep a night if lucky.  I fall asleep for an hour and then wide awake.  Sometimes I wish I was back to a small child and I could take a nap.  Just doesn’t happen.  Having a child with SPD can mean sleep issues and that is the case with my son. He wonders the house at night sleeps for an hour or so and then up for the rest of the night.  It is hard on this momma worrying what is he doing, what is he up to. Now I have my own mind racing at 100mph at night.  Do you know the stupid thing you can worry about at night…it is stupid stuff.  Going from normal hearing or near normal to needing hearing aids in a 2 week period can cause lots of thinking and reflecting.  My mind goes to why, can people notice, will it get worse. I know it could be a lot worse but in the middle of the night I am sorry you think about yourself, or at least I do.  As I drink my sleepy time tea tonight I pray that these worries will subside and my mind can be like my SPD son and just crash.  He gets to Thursday night each week and just crashes. I need a Thursday night.  To all the other SPD moms out there they know that days can be hard and nights can be harder. We all need that Thursday night once and a while.