Family

Sensory Disorder and My Son Part 2.

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In addition to Sensory Modulation, another category under the umbrella term of Sensory Processing disorder is Sensory Based Motor Disorder. In a Sensory Based Motor Disorder a person has difficulty with balance, motor coordination and the performance of skilled non-habit tasks. One of the subcategories is Postural Disorder.  A postural disorder is impaired perception of body position, poor movement of patterns that depend on core stability, and have weak or poor endurance. A person with Postural  Disorder has difficulty in stabilizing their body when in movement or in rest. Symptoms include leaning and slouching a lot, more sedentary and weak. Symptoms also include tiring easily, having poor balance or have problems with your fine or gross motor skills.

My son has a few of these issues such as leaning a lot, he also has difficulty with endurance and balance.  My son has been diagnosed with Dyspraxia.

Dyspraxia is difficulty in thinking, planning or executing skilled movements particularly those that are novel in pattern. Dyspraxia can affect fine and gross motor skills.  It can also affect speech. Symptoms can include problems using cutlery, buttons, cleaning, problems with using locks and keys, self care, writing, typing, riding a bike, and typing shoelaces.  The sufferer can appear clumsy.  Symptoms in early childhood can include difficulty in comforting, feeding issues, problems with sleep, and delayed motor development.

My son’s symptoms in dyspraxia include great difficulty in handwriting with no improvement over time.  We had to get a special allowance to do things verbally or on the computer.  We taught him to type and he is the go to person for teachers on all things I pad. He has difficulty in sport which has lead to social problems in school.  He has difficulty in cutting food, buttoning things, using snaps and tying his shoelaces.  He tries to minimize these things as much as possible.  He will get so frustrated that he will give up.  I can’t blame him.  No matter how smart he is or how hard he tries it is an issue. My son also has all the symptoms of early childhood like appearing clumsy, sleeping problems, and feeding issues.  I was glad that there was finally a term for him.  So people would not say he is lazy or not trying hard.

While Dyspraxia and Postural disorder share a few common symptoms they are different disorders.  A qualified Occupational Therapist can diagnose you more accurately.

My son was diagnosed dyspraxia with disgraphia. I will cover disgraphia in another post.

The final sub area of Sensory Disorder is Sensory Discrimination Disorder.  Sensory Discrimination Disorder is a disorder in how sensory stimuli are perceived and meaning attributed to them.  Each sense can be affect separately or simultaneously by different interpretations of stimuli.

For instance, my son experiences touch differently in both clothing, fabrics and food.  He also seeks out physical touch of others as a way of calming himself.  So he loves hugs and cuddles.  He will often hold your hand or lean against you even if he is not tired.  My son often thinks he hears things said that were not.  Now, I’m not sure this is sensory, but have a hunch it is his ADHD. Another disorder for another time. In addition to his normal five senses.  This area adds position/movement and interoception to the sense list.  I know my son has issues with interoception.  It is how you interpret stimuli from internal organs.  He has great difficulty expressing what is going on with him when he is ill.  He can never tell me how his stomach hurts.  He just says it hurts.  Trying to get additional information is difficult.

Well this is the end of my posts explaining the areas of Sensory Processing Disorder.  In my next post (on Sensory Disorder) I will explain my son’s experiences with treatment of this disorder and the results.  I will also go into what I would do differently and what I plan on doing in future.  Stay tuned!

*Hey guys, I’m just a mom trying to get blog posts in between laundry loads.  This article is for entertainment purposes only.  I’m not a doctor.  If you think you have questions on Sensory Disorder ask a real medical professional okay?  Information sources: http://www.spdstar.org, moynatalcer.co.uk, dyspraxiafoundation.org.uk.

 

 

Family

My Sensory Son.

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Sensory disorder.  It’s seems like a new thing right?  Twenty years ago we never heard much about it.  While it’s always been there, sensory processing disorder isn’t new.  Sensory Integration disorder was first defined by Occupational Therapist Anna Jean Ayres in 1972. Unfortunately, at this time the medical literature does not recognize as a medical or psychological concern.

Sensory Processing Disorder also known as Sensory Integration Disorder is broken down into three categories: Sensory Modulation, Sensory Based Motor Disorder, and Sensory Discrimination Disorder.  Sensory Integration Disorder means that the brain does not have the ability to respond to the stimuli of the environmental in an accurate way.  It can manifest by over responding to stimuli, under responding to stimuli or crave stimuli.

The first group of Categories under the Sensory Processing umbrella is Sensory Modulation.  Sensory modulation has three subcategories.  These sub categories include over responding, under responding, and craving responses. By over responding to stimuli people can startle easy, be picky eaters, have issues with clothing, personal care issues, moodiness, frustrated easily, meltdowns are out of proportion, can be overwhelmed by noisy or busy situation.  They have a strong fight or flight response and will avoid uncomfortable situations.

My own son “E” meets the over response. He startles easy. He has ever since he was a baby.  Loud noises scare him. He is an exceptionally picky eater.  He refuses to eat fruits or veggies based on texture or how they feel in his mouth.  His list of foods he will eat gets smaller each year.  It’s frustrating for me.  He will only wear cotton t-shirts and silky basketball pants.  In a pinch I can get him to wear sweats.  Regular clothing with tags or jeans with pockets feel awful to him. He prefers to wear hoodies and fleece to regular winter wear.  So often he is cold. For his bedding he has to sleep on a velour blanket instead of the cotton sheets.  Then he prefers fuzzy pillows and a large comforter.  He did not like a weighted blanket at all.  Tactile is everything. Personal care is an issues as he does not like to comb his hair as it is painful for him.  He has recently become frustrated as well, and is showing signs of anxiety and depression. He is trying to avoid numerous of situations to keep himself calm.  It creates huge issues for all of us.  The stress is unavoidable.

For those who suffer from under responsive reaction to stimuli it can manifest itself as quiet and passive.  They lack the ability to detect and respond to correct stimuli.  Symptoms include unfocused, overweight, craves spicy or salty foods, a high pain tolerance, low muscle tone, poor fine motor skills and clumsy.

Now my son has a few of these traits.  He is unfocused.  However, I think this has more to do with his ADHD.  He also has poor muscle tone, poor fine motor skills and is clumsy.  That being said.  I do not believe he is under responsive based on his reactions over the years.

The final sub-category is sensory seeking. Those who are sensory seeking display an strong desire for sensory input. They will crave sweets, crash into things like walls for the sensation, run, skip or jump everywhere, cannot sit still, has to touch everything and cannot identify where their space ends and yours begins. Often their reactions are at opposite ends of the spectrum from what is considered normal.

For my own child he loves sweats!  I think this is normal for every kid and I don’t see an over the top response. He does like to crash into walls and run, jump and skip everywhere.  When I ask him why, he says he needs to get his energy out.  Can a child have more than one subcategory?  I am not an Occupational Therapist or expert but I don’t see why not.

Sounds like a lot of other disorders doesn’t it? Sensory Processing Disorder can coexist and/or mask many other types of issues such as ADHD, Anxiety,  and more.  Each sensory system can have a disorder in it.  The systems are: visual, auditory, tactile, smell, taste,vestibular, proprioception, and interoception. Vestibular means relating to or affecting the perception of body position and movement. Proprioception means the reception of stimuli produced within an organism. Interoception means relating to or being stimuli arising within the body and especially in the viscera (internal organs).

Each sub-type has different symptoms, and severity based on the individual.  Therefore individual assessment is needed. Treatment is also individually based depending on symptoms and severity.

In the next post we will look at Sensory Based Motor Disorder.

Please note: I am not a professional.  I am just a mom.  I am not a substitute for a medical professional. If you have any questions or concerns about your own health or that of someone you love, please see a medical professional.  This information is for entertainment uses only and not a substitution for a doctor.

Sources: Merriam-Webster Dictionary, Star Institute http://www.spdstar.org, http://www.sensationalbrain.com, and WebMD.

 

Family

5 Manners 4 Kids

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It’s time to revisit manners for kids again! Here is April’s list of manners to know.

1. How to lose graciously. This idea for manners has really taken a beating lately hasn’t it? Winning has become everything. The only thing. I get it.  We all want to be winners.  It feels so good to win. To win with grace?  That takes it to a whole different level. It’s okay to be proud, happy just not boastful and mean to others.

2. Interrupting. My son still does this.  To be honest, I do it too.  It’s always tough when you are chomping at the bit to tell somebody something.  The art of conversation is a lost art. Keep fighting the good fight by giving great examples to your child.  Include them in the conversation with adults.  It will take time, but it will be worth it later.

3. How to Introduce Someone. It sounds easy, but for children it can be scary.  A basic lesson on introductions can be in order.  Something along the lines of “Bob, this is Mary, Mary this is my friend Bob” can go a long way.

4. Burping. What kid doesn’t like a good burp? Instead of encouraging the burping contest, how do you teach them to act when it accidentally happens?  First, handle it like an adult.  Don’t laugh, but don’t get upset.  Ask them to say excuse me loud enough so the whole table can hear.  Later down the line, you can teach them not to do it out loud by closing their mouth.

5. How to leave a message. In the era of the text and the email, the idea of leaving a message seems outdated.  We still need to leave messages don’t we?  I can’t tell you how many times I’ve had to listen to a message someone from a company or office has left me.  There are only a few things that need to be included in a great phone message.  One is your full name.  You may think you friend only knows one Monica but you would be surprised.  Second is your return phone number.  Don’t assume someone has it.  It may not be handy.  Third is what you message is about.  Keep it short and sweet ,”Hi. It’s Jane Smith, my number is 555-5555, I’m calling about our meeting time tomorrow.  I want to confirm it’s at 2 p.m.. Please call to confirm this.”  Fourth is already shown in the previous quote.  It’s an action.  What do you want the person to do?  Should they call you back? Wait for you to call again?  Watch for a letter?  Let them know. Finally, short goodbye or thank you lets the person know your message is over.

In addition to the message, you always want to make sure that you speak in a clear and even tempo.  Trying to go fast will only frustrate the listener and maybe not result in the action you were hoping for.  If they can’t understand you, they can’t act upon your message.

Family · Self

The Last Part… To Be Continued Pt. 3

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When my phone rang on a very windy, snowy weekday I expected to hear my son on the other end crying or begging me to come.  It wasn’t.  It was one of the therapists telling me they were going to discharge my son from the program. What?  It was only five days! We removed him from another program track to get him into this one. I have no place to put him.  So my husband drove the hour to go pick him up in a winter snow storm.  Two hours later my son was home.

They told us he did not have an eating disorder.  We couldn’t believe it. All the previous therapists told us how sick he was.  This facility said that although his BMI is less than 15, his weight is in the 50th percentile.  So he doesn’t qualify for weight restoration.  In addition, they said they were doing more harm to him than good.  His anxiety and depression ramped up lot.  He was still talking about suicide. They felt he would only be more damaged if they continued.  So he is now home, not in school.  I have been rushing to try and find a new place for him.  He really hasn’t had enough therapy to make much of an impact. I feel like we wasted more than a month for nothing.  It didn’t help him one bit.  So frustrating!

I immediately got him on the wait list for the last PHP (Partial Hospitalization Program) he was in.  There are over 20+ children a head of him.  He may not get in till summer.  In the meantime, he is not in school.  So I have him seeing his regular therapist twice a week and his psychiatrist every month.  We are also once again changing his medication.  As of tomorrow,  he will be on his third med so far.  I hope this one works. We are a bit desperate for something to work.

I have also contacted his school district about enrolling him in his school. We are trying to get him home bound instruction now.  It’s where a tutor will come to the house to help him catch up. He is behind since January.  I hope we can get him caught up.  Fortunately, he is very intelligent.  The classes that matter are Math, English, and Science.  So those we will be working on.  Getting home bound, they told me takes time.  I just want to pull my hair out.

I will be meeting with some teachers and advisors from his school to discuss his IEP on Tuesday.  I will have to see where we are then. I also need to get tutors for the summer.  I also need to make sure our therapy is the best it can be. So much to do with no clear direction to relief.

 

Family

To Be Continued, Part 2

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When we drove our son up to the inpatient hospital he was okay.  I don’t think he could comprehend what was about to happen. Upon arrival, they informed us that they were running behind schedule.  This would turn out to be a huge problem.  Our son would get so overwhelmed that he would have major meltdowns.  We were there for over 5 hours.  During that time, my son cried, dry heaved, screamed, grabbed me and begged me not to leave him. He kept crying saying “Mom, don’t leave me, I can’t do this without you. I need you.”  It killed me.  It was so painful.  I felt absolutely horrible.  I just didn’t know what to do.  I pride myself on always knowing what to do.

I went to visit my son everyday.  My heart went out to the other children on the ward.  I would go days without seeing another visitor name in the sign in logs for the children.  I realize other families have responsibilities and children.  I just thought I would see more visitors.  Every time I went, “E” would beg me to take him home.  He had great difficulty participating in the groups they did.  Each day before I came “E” would call me crying asking me when I was coming up.

Finally after ten days he was released.  From what I understand people are released when their insurance runs out.  We questioned them, (the doctors) about this once they told us that insurance was not going to pay.  They assured us he was fine. I didn’t quite believe them. However, I saw no indication my son was improving, so we decided to take him home.

The doctors advised us that “E” has an eating disorder. I have for years tried to get my son to alter his eating habits.  He doesn’t eat fruits or veggies.  He has sensory processing disorder. Food and dress are his biggest areas of problems.  If you try to force him to eat he will vomit or gag the food.  He will also just not eat at all. If his food has spices he cannot eat them, the spices must be taken off. His food cannot touch, he needs separate plates and utensils.  I had tried for years to get his food issues fixed to no avail.  So when they said he had an eating disorder I thought, ” finally”! They then sprung on us a new inpatient program.

They said that he would have to go to a three week in patient eating disorder clinic.  I resisted a bit saying I thought it would be outpatient.  My son is only 11, how is he going to handle three weeks?  The doctors told me he was very sick.  They said his BMI had him ranked as malnourished.  I guess anything under 15 qualifies for that. So within a few days I drove him to the new facility.

The intake was so long, my son cried and screamed and begged not to stay.  While this was a much nicer place than the lock down facility, it still wasn’t home. In addition, all the kids there were so much older than my son.  He’s 11.  The next youngest was 14.  His roommate was 17.  It was another day of mental, physical, and emotional exhaustion. While leaving him at this facility was slightly better than the lock down facility it is a lot for a young child to deal with.

Unfortunately, the next day I came down with an illness and could not go to visit him.  He would call me daily in tears and crying begging me to come visit him.  I really wanted to.  The illness I had would be detrimental to kids in an eating disorder clinic.  I couldn’t risk passing this along to others. Then six days later I get a phone call…..

 

Family · Self

What’s going on.

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Hello Everyone,

I am sure you are wondering if I gave up on my blog.  No I haven’t but outside circumstances have put a temporary halt to things.  Let’s see, as many of you know our home remodeling from hell has finally ended.  The last day of construction was in December.

Also in December I had a breast cancer scare.  I had a routine mammogram in early December.  The results came back with some specious lumps.  Since I get breast cancer from both sides of my family I pay attention to my health in this area.  So I went in for an ultrasound right before Christmas.  Once lump came back as a cyst, the other lump was undetermined.  So I would next have to go in for a die contrast MRI. The day before Christmas Eve I went in.  The results would not be back till after Christmas.

It made for a rough holiday season.  Luckily, the second spot was another cyst and I was given the all clear.  Whew!

The biggest source of stress has been my son “E”.  Normally, he is the most kind, gentle, bright, shy and happy child.  During this past summer this started to change a bit. We figured that he was going into junior high school (so getting older, teen angst) and with all the home construction stress, he was just moody.  When school started, he was under a lot of stress. Normal right?  In many ways he was also better.  He seemed to be more responsible and his ADHD was better managed.  His grades were high too.  While a lot of his friends didn’t go to that school, there were a few that did. So he wasn’t completely alone.

As the year progressed we noticed him becoming more and more anxious. He started to get ill and began to miss school.  He was getting difficult to wake up.  He was starting to cry, shake, and have meltdowns.  It was like someone flipped a switch on his personality.  He has his first panic attack in the Fall. I knew right away what it was.

I took my son into his pediatrician to get him started immediately on medication. He also started seeing his therapist more often.  I was able to get him some accommodations at school for his anxiety too. Unfortunately, he started to self harm.  As the desire for self harm began to increase we removed him from school and enrolled him in a PHP.  PHP stands for partial hospitalization program.

“E” would attend the PHP from about 9-4 Monday-Friday.  Then he would come home on nights and weekends.  At PHP he would receive therapy, medical treatment, and schooling to help him overcome his anxiety and depression. He attended for several weeks when we received a phone call from the staff psychologist saying “E” was very suicidal. The decision was made on advice of the staff to place my son in a 24 hour lock down facility for adolescents.  It was the hardest decision I’ve had to make.  I knew it needed to be done. However, now I look back and question it a bit more.

To be continued…

 

Family

Supplies You Need For a Long Car Trip.

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‘Tis the season for long car trips.  You thought they were over when summer ended didn’t you?  Nope, now it’s holidays with the relatives. How long will you be in the car?  How many kids will you have with you?  What are their ages?  Will pets be with you?  Other relatives?

  1. Car charger, lets face it,  I pads and I pods  and everything else in between use up a lot of power. They are the new babysitter whether we like it or not.  For long car trips they are a life saver.
  2. Tissues/Paper Towel.  Kids spill stuff.  Keep your car clean by stocking some paper towel or tissues for spills.
  3. Snacks. Individually packaged of course.  When the kids get upset they are probably hungry.  Throw a few snacks their direction.
  4. Drinks in a cooler. What are snacks without something to wash it down?
  5. Change of Clothes. People spill things on themselves, it gets hot, kids pee themselves, and so on.  A quick change of clothes is never wasted.
  6. Notebook/Pen. You are always thinking of stuff to do, people to contact, chores to do etc.  Write it down!  Let your child draw, exchange info in a traffic accident, draw a map, the possibilities are endless.
  7. Wipes. I keep these in my car year round.  I have two types of wipes.  Once is a wet ones hand wipe.  I use it after I pump gas or go shopping.  Yuck germs. Then I have a windex wipes to keep the car clean as well.
  8. Change. While most places take a credit card, change still is widely used at parking meters, vending machines etc.
  9. Music. If you have ever gone on long car trips before you know where I am going for this.  Certain parts of the country have horrible musical selections!  Satellite Radio is a gift from the gods!  Just remember to print out a channel guide.

Happy Traveling!