This is the life of one kid that is a Congenital Heart Defect survivor and is battling through life with sensory integration disorder.
Monday, April 16, 2012
Autism Awareness - behaviors
For children that have SPD and that are on that Autism spectrum many behaviors are uncontrollable by the child themselves. They need help from those around them. For myself, I have "warning signs" that I exhibit prior to having a problem. Adults that pay attention to me and that get to know me learn these signs pretty quickly. My sensory issues can be closely related to what I eat and so my diet matters too.
In a classroom environment, church or school, I sometimes get overwhelmed if it is loud, bright, chaotic, etc. Mom described it very well the other day when she was explaining how her migraine made her feel. Any little thing hurt, pitches of sound, touch, intensity of light, too much activity going on, all of that can contribute to my behavior.
My "warning signs" start with a complaint. I will say its too loud or say I need my sunglasses. The next step is I get into defensive postures, climbing under tables or desks, cuddling into a trusted adult/sibling, hiding. If the issue is not resolved I get agitated. I sling my arms out at people to chase them away, not trying to hurt them, I just don't want to be social. This is when mom needs to be gotten because if it gets worse from here, it gets ugly.
Why am I sharing this? Not to leave a stigma. I share because there is plenty of time to defuse the situation. If you are dealing with a child like me, you cannot yell at them to correct them, it will only make the situation worse. Yelling at children with sensory issues is an assault on multiple senses. One of my brothers has sensory integration disorder and one of his teachers did not understand what that meant so when she would correct him she would raise her voice, his behavior would get worse, then she would yell. This would continue until he burst out into a rage of throwing objects. The rage would not have happened had the teacher been able to keep her voice calm.
My advice? Get help. Learn how to cope with the behaviors. You are not alone.
Wednesday, July 27, 2011
Visiting the Dentist
One of my big sensory issues is that I have an oral fixation. I like to suck my thumb. No big deal, right?
My dentist is VERY concerned that my habit is doing some damage to my mouth. It appears that because I suck my thumb so much it is causing my teeth to miss-align.
So, this morning I get to go to the dentist to have an appliance put on my teeth to keep me from sucking my thumb and to prevent my teeth from moving the wrong way anymore.
I am nervous. And I am afraid its going to hurt.
Friday, January 28, 2011
Disorder of Childhood ... in response to a question
313.9 Disorder of Infancy, Childhood, or Adolescence Not Otherwise SpecifiedThis category is a residual category for disorders with onset in infancy, childhood, or adolescence that do not meet criteria for any specific disorder in the Classification. (taken from www.dsm5.org)
In Benji's case, at the time of diagnosis he had speech apraxia, mild hypotonia, and sensory integration disorder. To be on the conservative side, doctors are waiting to see what age and therapy takes care of for him. It is fully possible that the speech, tone and sensory issues are all related to his heart surgery that was required to repair his aorta. It is also fully possible that the onset was coincidental. Benji does have difficulty in social situations. He is also very focused on things of interest and distracted when it comes to lack of interest.
To be honest, we are praying that Benji is cured of all of the issues and not have any diagnosis. Until that time however, we will be working with his doctors to determine what it is that is going on. One of the hypothesis that is in contention is that Benji has a form of Asperger's Syndrome. This may or may not be the case.
Wednesday, January 12, 2011
Sensory Processing Disorder is REAL
Ever heard a phrase similar to that? Ever get down right mad when it was during your child's IEP or 504plan meeting? Ever have your child's SPD symptoms completely dismissed even though you have an official diagnosis from one of the top Children's Hospitals in the country?
We have heard this. Not just from his current school. Other places too.
Benji is tactile defensive, oral defensive, visual and auditory defensive while also being deep pressure seeking. He is able to function because we work with him and he has had therapy for most of his life. Yet, there are still issues.
- He will fall out of his seat for the deep pressure
- He will fall to the ground.
- He does chew on things
- He will refuse to eat something because of how it looks or feels
- He can not focus in a room that is loud and busy
- He has a difficult time going to stores, malls, or public play areas
There are ways to treat Benji's sensory issues.
- a sling swing
- BIG hugs
- jumping on the mini trampoline
- carrying a heavy ball up and down the hall
- simple exercises (jumping jacks, sit-ups w/ exercise ball, touching toes)
- playing in dry beans
- painting with shaving cream
- nice warm epsom salt bath (15-20 minutes)
- soft long sleeve shirts w/o tags
- allowing his silky (piece of satin fabric like a security blanket)
- He starts getting clingy or appearing tired
- Sucks his thumb, twirls hair
- Starts rocking if sitting
- Gets whiny (at this point the environment HAS to change)
- meltdown
So PLEASE, PLEASE, remember, Sensory Processing Disorder is REAL!
Thursday, December 16, 2010
Countdown!
| Changing the date on the calendar |
We are so glad that his "Countdown to Jesus' Birthday" calendar is doing a magnificent job at letting him know how long to the date and he can visually see the date coming closer. We only wish we got it sooner. :)
Tuesday, December 14, 2010
Snow is.... yucky!
| A brief moment that the snow was okay |
For Benji, he normally like the 2-3 inches we get with the temperatures right around freezing. This snow is completely different for him. We haven't been over 26 for 3 days. Our lows have been in the single digits. (In fact this morning it was 4') He went outside on Sunday, when the picture was taken, but once he got cold he was done with it.
Between the snow being wet and cold, and not going to school this week has been hard for Benji. He is hoping that they go back tomorrow, but only the roads will determine that. Potential for more ice/snow/sleet is coming tomorrow and we are pretty sure that would knock out hopes of school for the rest of the week here.
Stay warm! Be Blessed!
Wednesday, November 24, 2010
Totally Out of Sync
Tuesday morning we made a sick visit appointment for Wednesday afternoon thinking we should get him checked before the holiday but not in a rush because there was no fever.
Benji got to the doctor's office and was all over the place. In the exam room he was climbing and jumping and "crashing" and ... you get the picture. The doctor comes in and we go over everything. Benji had a low grade fever of 99.3, his ears and nose was clear and aside from a little irritation his mouth/throat was good too. Blood pressure was good (100/68) and even though he had a mucus-y cough his lungs were clear.
So Dr. talked with me for a few minutes and I shared that in Kindergarten the "Slap Cheek Measles" was going around and so was Strep. Dr. didn't think it was strep but with Benji's aortic valve he figured best to check.
Benji has strep.
Doctor - "Why do you think he is sick?"
Mom - "He is out of control with his sensory issues."
Doctor - (after getting test results back) "You might be on to something there."
Monday, September 20, 2010
A Hopefully Typical Day
Benji was adorable Friday when our family went to celebrate Uncle Marc's (and Uncle Frank's) birthday. As we were leaving he grabbed one of those cable internet mailing cards and decided it was Un Ma-cs birthday card "that you have to turn over". He was very animate about the card and I don't think I can explain it and give justice. For about 30 minutes he just wouldn't let it go.
Saturday, Benji has made a new friend that he thinks is just his own. We will call him T. The three boys had a WONDERFUL time playing with T. They played outside, they played in our house, they played next door. They had a lot of fun. Just where Benji was perservating on the card Friday, after T had to go he just kept on about how he missed T and hoped to see T again.
This weekend reminds our family how unique Benji is. Now we just pray his "quirky" tendencies calm down and he has a good week.
Tuesday, August 24, 2010
Sensory Friendly GiveAway for Back To School!
Here's the stash:
3 pack of Soft Sensory Tees in color/size of your choice
6 pairs of Soft Seamless Socks
"This is Gabriel Making Sense of School
Lands End Uniform Backpack
Classpack of Crayola Colored Pencils
Tactile Fidget
Desk Buddy Sensory Bar
6-Pack of Mead Spiral Wide Ruled Notebooks
4-BG Flash Drive
12-Pack of Crayola Washable Fine-Tip Markers
Peltor Junior Noise Protector Headphones
Classic Pencil Grip Pencil Sharpener
4-Pack of Sharpie Highlighter Pens
3-Pack of Pink Paper-Mate Rubber Erasers
2 Mead Classic Composition Books
Plastic Hinged School Tool Box
Max's Mud-Natural Sculpting Dough
Pocket Stixx Oral Motor Tubes
While you are over there, check out what all Soft Clothing has to offer!
(product links are for examples only, may not be exact item in giveaway.)
Tuesday, August 03, 2010
Gross Motor Excellence
Saturday, July 24, 2010
Reality points out Regression
Up until today, this is what I thought was going on with Benji.
He has wet the bed probably about 5 times in the last month, and while that may not be OMG bad, for him it is very unusual. Once he potty trained he never had an accident until now. To have 5 in the last month...
If night time pottying issues were the only issue I still wouldn't be really concerned.
We have noticed immature behaviors surfacing. Things like constantly sucking his thumb and twirling his hair. Throwing himself on the floor. Very much sensory seeking type behaviors. Also baby talk has come back.
With all of these behaviors I didn't really think it was that bad, until we went to the bowling alley today. Benji's sensory stuff really kicked in. Loud music, stimulating atmosphere, the process of bowling... midway through the first game he was wanting deep pressure hugs and his silky. We played two games and wasn't sure he would make it through the second one. He would put his head on the vent that bowlers use for their hands and let it blow his hair. He kept throwing himself on teh floor and rolling around. It wasn't the things he was doing that stood out though, it was the way he was doing them.
This all just brings back my concerns over the school change and his lack of Occupational Therapy. Just praying on that one. I already know the focus is going to be about the heart condition, but he has tone and sensory issues that have to be addressed for him to succeed in school.
How can a child learn if the classroom is distracting? How can a child learn if the noise hurts?
One day at a time and relying on God. That is the only way we can get through this.
There was one moment when we were getting ready to leave this morning that he just stared off. It took me shouting his name to acknowledge us. This isn't the first time, but shoot... I day dream and it looks like I am just staring off. *sigh*
Monday, June 28, 2010
Still wiggling
Monday, October 05, 2009
Slowing Overcoming...
The down side to this is that he missed the last two days of school before fall break and we are out for two weeks. So those of you with sensory kids can understand when I say it's been rough!
Being sick, schedule changing, not able to play outside cause it is raining, etc... is driving him crazy! So glad we found the Sonic collection at Game Stop last night for the PS2. It was only $12. So at least he can focus on playing it and have something to do.
We go to the dentist tomorrow for the regular check up/cleaning. I pray all will be okay there. He is oral defensive. Doesn't really like us messing with his mouth.
Friday, August 21, 2009
School is underway...
School started for Benji on August 3rd. He goes to school for ½ day, 4 days a week. His school is a developmental preschool that is based on a reverse inclusion model. (It’s for special needs or developmentally delayed children and they bring in typically developing peers) I love what it does for Benji.
Benji started in his preschool just after his 3rd birthday, so he’s been in for a little over a year. He has responded so well! His speech has vastly improved, he tolerates change better, he is learning how to control his sensory issues too. Now if we can just get him to write…
Back to the last three weeks.
Week one, Benji did really good. He was complaining that he wasn’t in the same classroom from last year, but we talked about it and explained that you change classes as you get older and smarter. He already knew the teachers because pre-3 and pre-4 work together. This week the peers weren’t there.
Week two, EVERYBODY is at school this week. The week went very well at school. At home Benji was very emotional and didn’t want to go to school until we got there. Wednesday and Thursday he didn’t want to get up and get going. He had a little bit of a problem listening on Thursday, his teacher had to redirect him. After school we had to go to the allergy doctor.
This past week, Benji has been very sleepy and whiney in the mornings. We have finally gotten him convinced that his class is fun. Thinking that we are getting into allergy season, he has runny nose and congestion when he wakes up. He looks tired. On Wednesday he wasn’t wanting to do circle time. Got him some medicine and Thursday was a great day.
I am pretty sure that his behavior at school is much better than home. His teachers have a strict schedule and the kids have to go by it. At home we are seeing little blow ups until one of the siblings does something that offends him and then there is no stopping the meltdown… Praise God we were at home when they happened.
After PT this past Tuesday he was fatigued… his teacher said it only lasted about a half hour and then he rebounded.
Gotta work on morning exercises more. We did them the first week daily and then slacked off. I think they help him a lot. Jumping on the mini-tramp, situps on the exercise ball, lifting the weighted ball, sling swing…
Next week will bring more changes for the little man since mom is going to school herself. Praying the adjustment goes smoothly.
Thursday, July 23, 2009
Been Awhile
We are coming towards the end of our Summer Break. We have a little over a week to go and then everybody goes back to school on August 3.
Benji is moving up to the 4 year old class room in the developmental preschool. He has made much improvement in all areas, although he is still considered globally delayed.
In June we under went standard developmental testing along with autism screening. The doctor believes that Benji is more at risk for ADHD combined type than anything else. As the primary caregiver and mother of Benji, I disagree. The doctor believes it's the ADHD because Benji's attention span lasts about 20 minutes. Also because Benji has a hard time adjusting to schedule change. And when Benji is over-sensitized he gets hyper and has meltdowns.
Benji has sensory integration disorder. He is very tactile defensive. He is also sensory seeking. Examples... eating pancakes and Benji gets syrup on his hands, he has to get it washed off as soon as possible. Benji enjoys 'crashing' into the wall, or falling. We handle his sensory stuff by doing exercises. He jumps on the mini-tramp, swings in the sling swing, swims in the pool, body massage, bouncy ball, and stretching exercises. When doing things that will set off his tactile defensiveness we keep it to a minimum and at meals keep a damp wash cloth handy.
Benji also has food intolerances. His is VERY lactose intolerant tot he point we avoid lactose, casein, whey and anything that hints of having to do with cow's milk. Benji can not tolerate food dyes, specifically red 40 but others are suspected, we just discovered another chemical that sets him off too. (azodicarbonamide) His reaction is extreme hyperactivity and moodiness.
It has been known for quite some time that food intolerances can mimic ADHD. So why, when a child has known food intolerances are they still quick to point to ADHD?
I am disheartened right now when it comes to doctors listening to parents. I know my child. I also know that there is something going on. For now his labels are global developmental delay ~ NOS ... The Sensory Integration is I suppose an informal diagnosis now.
Our other concern with Benji right now is that we notice while he is sleeping there is a lot of restlessness. Normally that wouldn't bother me because I know little ones can be active in their sleep. But that combined with moments throughout the day where he just stares off has me concerned. Working on getting in to the doc... again. Praying the suspicion is wrong.
Wednesday, May 06, 2009
Finally, a little common sense
My Child Has Autism and I Vaccinate (http://www.blogher.com/my-child-has-autism-and-i-vaccinate)
I appreciate this article. Not because I dismiss the vaccination theory. I appreciate it because whether or not vaccinations with thermosil cause autism or not, my son's symptoms were not from his vaccinations.
We had genetics tell us that because nothing showed up on the select testing they did that it had to have been the vaccinations.
We have had pediatrician tell us there is nothing wrong with Benji when there are reports from several therapists saying otherwise.
We know we have a quirky kid. A quirky kid that we love. And we also know that there is something there. To have a doctor tell you that they would diagnose him with Asperger Syndrome but can't because his speech was significantly delayed confirms your belief that there is something going on. It's not that I want my child to be sick or to be labeled. But I know there is something going on.
We know he has the sensory integration disorder. He is tactile and oral defensive while sensory seeking with deep pressure. I praise the Lord that we are able to handle most of it by thinking ahead. For his deep pressure we have the mini trampoline for him to jump on, an exercise ball he can bounce on and a sling swing to swing in in the house.
For the defensive, it's difficult with the foods. Once he decides he isn't going to eat something, there really is no way around it. Unless you want a meltdown, because it goes beyond a tantrum. His tactile defensiveness we make sure to have a wash cloth or wet wipes around at all times. He HATES being icky, sticky, slimy, etc.
Anyhow... I know Benji's stuff isn't from the vaccinations. His regression started before the 18 month shots. And it escalated when we moved and our schedule changed.
Anyhow... just some thoughts today. I know I am jumbled and rambled... forgive.
Tuesday, March 24, 2009
The Good, The Bad, The Stimmy!
So, Dr. Cooper was glad to see us and reviewed Benji's progress with me. Or.. I should say I shared Benji's progress.
- His Speech is almost completely caught up. He still has some articulation to work on and he needs to pronunciate better, but he is a talking machine once he gets going.
- His fine motor skills are nearly on par. It's more of a stubbornness problem than not being able to do something. (i.e. He knows how to hold a pencil/crayon but chooses not to do it right)
- Gross Motor is improving. He still needs to strengthen his core muscles and we still need to work on those ankles.
- He is off the blood pressure meds for his heart. It's will be a year in May!
- While he does have low sugar episodes, we catch them quickly and he recovers fine. Mostly happens when he has been playing all day outside and doesn't want to stop for anything.
Anyhow.. so Dr. Cooper thinks we should do pretty much the same testing we did last time and see what comes up. His non-official opinion is that Benji is either a quirky 4 year old or we are looking at Asperger Syndrome. This does not surprise me at all.
- Ridgidty ~ Must have schedules. If normal routine changes he gets very non-compliant with anything. It completely disrupts him. (eating, sleeping, pottying, mood, etc)
- OCD type ~ While this isn't as bad as it could be. Benji is very particular about how things are. If he puts something somewhere, it had better be there when he gets back. Things also have to be 'just so'. It's hard to explain... would you like to come over and see one day?
- Obsession ~ for over two years the only thing Benji wanted was Cars. You know Disney Cars? It is still an obsession and he has moved to include Hot Wheels, Wall E, and Transformers with it. They are all mechanical and he loves to "help" work on the car or just to help with tools in general. He is also now obsessed with video games (PS2)
- He is very sensory seeking. The deep pressure type. He loves getting in his sling swing all cozy and swinging. Also jumping on a trampoline. When he is seeking he will throw himself on the ground or against the wall and laugh.
- While exercises have helped he is very tactile defensive. He will play in finger paints now but he doesn't like it and the second he thinks he is done he wants his hands cleaned.
- Can't stand to be sticky, slimy, itchy, etc.
Wednesday, March 11, 2009
IEP and such
Right now we are on spring break and unfortunately the change in schedule has messed the little guy up. His potty training has slid some. He don't want to use the potty for his BMs, so I put him in pull ups, which causes him to not care if he urinates in his pants. So sensory stuff is fun!
Benji's birthday was March 2nd and he had his party the night before. He was so thrilled with all of his 'CARS' toys it wasn't funny. Made me glad we hit the dollar aisle at Target. Plus I got the walking talking Lightning McQueen for $15 on clearance at Walmart right after Christmas!
Other than that we are just taking things one day at a time.
Tuesday, December 09, 2008
Bear Hunt
So... last week at school Benji and his friends did a bear hunt. They also learned about bear. (Brown Bear, Bear Hunt, etc.)
We got a couple of the crafts they did from it today. I think Benji did a great job even though last Thursday was hard for him. (We think the bear hunt scared him or the anticipation got him worked up. He had a hard time listening Thursday.)
So... one bear was covered in glue and he put oatmeal on it. It's cute!
The other bear is a small paper plate with ripped construction paper and all glued on. It looks like he did a good job there.
This is such an improvement from just six months ago!
Benji still doesn't like to get sticky or to get paint or glue on his hands, but he sees that if he tolerates it long enough he can make the craft and enjoy it. Then wash hands. I am sorta glad he insists on being clean. His brothers could learn from that. LOL...
Monday, December 08, 2008
Echo Update
Pulse-ox was 96% and Blood Pressure was 98.
Stats from right leg were 88 over 72.
Stats from right arm were 80 over 57.
This is without meds! The aorta looks great, no problems from the repair. The valve (aortic) is leaking but there has been little to no change since May.
Benji behaved wonderfully! He told Dr. Hermo all about his transformer Bumblebee. He stayed calm for the blood pressure and pulse ox. He was very curious about the echo but did as he was asked and laid still.
Benji has been okayed to do the Miracle Ball sports and T ball as long as the coaches understand he will need to rest more than normal and that heat will have a significant affect on him. (No problem there considering I am momma bear.)OT went good. Robyn was impressed that he was willing to play in the shaving cream while "washing" the cars in the car wash. He was tired and distracted but it was expected some. She got him reined in and today was productive.
We have regressed heavily on potty training at home and out and about. He doesn't want to go. As I said a couple posts ago.. with family and friends, schedule changes and the Holidays... I don't think I will really push until January. I will be glad when the diaper chapter is over. He also is coughing this evening... hoping it's just drainage. Little guy hasn't ever really been sick.



