December 16, 2015

Surprising sleep study results

 Well the results of the sleep study were what I anticipated, with a twist.  The RT that called with her results said the test showed that she has central sleep apnea (nothing new) and that 0.5 L of oxygen helps to keep her saturation's up (nothing new). Good nothings changed, glad we had another sleep study to tell us the same thing that we already know.  But then she continues to talk about the test. "Wait there is more? Now this is new". She goes on to tell me that she has obstructive apnea again (remember we had her tonsils and adenoids taken out in April of 2014 to correct this problem and after that the test showed it was successful and the obstructive apnea was gone).  She didn't have too many episodes, just about 10 or so. But her central apnea has gotten way worse.  She already has been labeled with severe central apnea, what's worse then severe?  Sadies test back in March showed that she stopped breathing about 190 times or so in a 9 hour period with no obstructive apnea. This test showed that she stopped breathing 290 times or so in a 6 hour period with 10 obstructive apnea's on top of that.  I think to myself "well that really sucks", she continues to talk about the test and tells me about different numbers.  All this is over my head.  I'm an RN not an RT.  But I listen and try to comprehend what she is saying and she is doing a great job of explaining things to me.  Then she gets to a percentage of something that used to be 20% and now its at 55%. and she says "and that really isn't good".  I start thinking "what does all this mean"?  Then the RT says "the good news is, is that with all the apnea spells that she has, she is not retaining any carbon dioxide, that number actually improved".  Yay!  Something is good from this report. Gotta focus on the good news, right?  We continue to talk for a little bit, and God bless this woman's soul, cause I start to cry on the phone with her (she probably was thinking that I'm a lunatic, lol).  But when you hear that your daughters respiratory system is getting worse, especially when you are not anticipating those results, it really tugs at those heart strings... A LOT.  We talked a little longer about stuff and that really and truly there is not much that can be done for central apnea.  We hang up the phone and I just sit and cry.
  When Sadie was born and we were learning about PCH, PTCD, CdLS, and everything else she has going on, it was more then obvious that respiratory seems to be these kiddos downfall (and gut issues, but that's a different story). I was told that a lot of them fall asleep and pass away in their sleep. Some are already ill with some sort of respiratory infection and some are not obviously sick. They just pass away for some reason.  So my biggest fear in life when it comes to Sadie is that one morning she is just not going to wake up.  It's a very morbid thought, but that's my reality.
  So I sit and cry for a while and then pull myself together quickly, as my other girls are going to be coming home from school soon.  Then my phone rings again and it's the same RT that I had spoken to earlier.  She said that after we hung up she couldn't get me off her mind and went and spoke to the Dr about the results again.  She said that there is a chance that a bi pap machine may help Sadie a little bit with her breathing problems and wanted to schedule another study so that we could trial the bi pap. You would have thought that I would have jumped on that, but I didn't.  Bi pap can bring on a hold new set of issues.  I had too many questions that she couldn't answer.  I made an appt with the Dr to actually talk to her about everything going on and about options, or should I say the bi pap machine.  She also suggested that I make an appt with Sadie's neurologist to see if her brain has any new changes.  I did that too.
  Now we sit and wait for these appt's.....

December 12, 2015

I think this is the 5th one

  5th what?  Sleep study!  Yes, here I sit again as my daughter sleeps with a bazillion wires and tubes attached to her head and body.  Honestly, I'm not sure why we are having anther one, but the Dr's must have there reasons. As far as I can tell, all her numbers are the same.  Nothing has changed.
  However, at least we had some excitement during this study. About an hour into our wonderful stay the fire alarms go off.  I work at this hospital , so I know that they test them frequently and policy is to close all the patients room doors.  So this happens.  About 5 mins or so after the alarms are going off our respiratory therapist comes in and says that we had to evacuate the building. WHAT!? Is this fire for real?  Luckily Sadie was not asleep yet, so we packed up all her stuff, put her in the stroller, transferred all our wires and machines safely and out the door we go.
  Luckily, it is not our typical winter in Michigan this year.  It has been fairly warm and no snow.  We hung out outside for about 10 min or so.  It ends up that there was no fire, but they couldn't figure out why the alarms were going off so that's why we evacuated.  Sadie didn't mind.  She loves the cool air and all the bright lights from the fire truck.  She was a happy girl.  And luckily the fresh air wore her out and she fell asleep right away after we got back in and got her all settled.
  At least this sleep study was entertaining. :)

November 23, 2015

About my 6 year old

  Aubrie is a beautiful child inside and out. She has a tender heart, smart, loving, funny, helpful, intelligent, athletic.  But she is also EXTREMELY sensitive.  You look at her the wrong way, she cries.  She sees an animal hurt, she cries. You brush her hair, she cries.  You ask her to do a chore (that I know she can do), she cries. If she thinks she hurt your feelings, she cries.  Every time I turn around she's crying.  At least she usually cries.  Sometimes those same things will make her so angry that she punches, kicks,hits, spits, starts blurting words that she doesn't even know she is saying "I hate you, you ruin my life, I wish I wasn't your daughter, I wish you weren't my mom/dad, I hate the world, my room, this house".  Then she stops and realizes what she said, then she starts crying all over again.  She becomes so out of control.
  Sometimes my husband and I are so exhausted from trying to watch our words, our actions, our reactions.  Sometimes we are at a total loss as to what to do for her.  Finally, I sought help.  I asked her pediatrician to recommend either counseling or some sort of therapy for her, and/or for us, as parents.  I want to be able to help her find her words to explain how she feels and to give her tools on how to control her actions.  Some people think I'm blowing things out of proportion, saying that she is a typical 6 yr old, but I see her differently.  I have seen red flags since she was about 6 mo when she was a very picky eater and when she was a toddler and was more then a clumsy child and then 2 yrs old and couldn't talk, or when she became obsessed with the color blue and wouldn't take anything but blue things, and my list can go on and on.  Those were just the tip of the ice berg.  Since then "the small things" are just adding up, I don't see anything that is detrimental to her health, but I want to get things a little bit more controlled before we hit the hormonal teenage years.  All these small things are just adding up.
  I personally think she also has sensory processing disorder just like Sadie.  Not to the same degree and they have totally different sensitivities, but the more I've learned about SPD (which is why I had so much education about SPD the entire month of Oct.) the more I see it in Aubrie.  So after the holidays we are going to go to a therapist and have her evaluated.  We shall see what comes from the eval.  I just want to help her learn and understand how to control herself.

November 18, 2015

A Mother's Love

She holds her baby close to her, pulls it gently to her breast.
She knows in her heart when her child is sick, tonight there’ll be no rest.
When her baby cries she cries too, the tears roll down her face. She’ll find no peace ‘til her child is well, she’s faithful in her race.

Her love she gives so freely when the trials are at her feet.
But when they do come in she’ll stand and fight, not once will she retreat.
There’s nights that sleep doesn’t come but she will rise to face the day.
As long as there’s breath in her she’ll never fail to pray.

“Please dear Lord hear my cry and save my child from this pain.
I would feel so empty without her Lord, please send the Latter Rain.”

She’ll spend hours on her knees in prayer while the world is fast asleep.
She prays that God will make things right before the troubles get too deep.
She’ll fight the Devil toe to toe, not thinking of her own life.
If it means dying so her child might live, she’ll gladly pay the price.

There’s nothing like a Mother’s Love, no greater thing on earth.
It's to them that we owe our lives, no way to measure their worth.

Never take her love for granted, she’s precious in God’s eyes.
With all her strength she’ll give her love, the greatest sacrifice.

Author Unknown

November 06, 2015

A Halloween Birthday Party

  Sadie had been so sick for the past couple weeks, there was a huge debate on if we should have her birthday party on Halloween as it was originally planned or not.  The party was on and then the party was off, on off, on off.  Finally, my husband and I sat down and really talked about the whole thing and finally we said "It was on".
  The party was off because I really wanted her to be able to enjoy her birthday. She loves watching all the people and watching the kids help her open her gifts. But she had been so tired and crappy feeling that I knew she wouldn't want to watch the actions of the day.  She wouldn't enjoy anything. It was off because her immune system was already compromised, and any new germs that were brought into the house could set her back further.  Did we want to take that risk?
  The party was on for many more reasons, two of them was my own selfishness.  4 years ago on Halloween I was released from the hospital.  I left empty handed and drove away leaving my baby in the NICU for others to take care of.  It was one of the worst days of my life.  For the past few Halloweens I think of that moment and feel those feelings all over again.  I needed to replace those feelings with happy feeling and memories.  A birthday party would do that for me, especially cause it was for the child that I grieved for 4 yrs ago.  My other reason for wanting that party was so that I never had regrets.  What if Sadie didn't get better, what if something happened?  I didn't want to regret never having a 4th birthday party for her.  We also decided to have the party because Chloe and Aubrie really wanted Sadie to have a costume party and they had planned it for awhile. They had helped pick out food and decorations and just wanted Sadie to be happy with her party (they had planned games too, but those didn't work out so well).  Also we had the party because half of the people that would be here for the birthday party were going to be here anyways for trick or treating. The pros outweighed the cons.  The party was on!
  We had no regrets with our decision.  Lucky for us Sadie was starting to perk up on Friday night and on Saturday she was doing pretty good.  Still would occasionally cough/choke and took a couple of longer naps, but over all she was on the upswing.

A Sweet little puppy
A Cute Caribbean pirate

A Scary skeleton

My Girls

Some guests at our party

2 little kitties
Football player, pirate, batty vampire, skeleton, ninja
a pig and doctor

ninja turtles
creepy clown and cat
Well... I'm just not sure. Lol  He didn't have a costume, so he grabbed one of the girls dress up masks.
A game character (I don't remember the name of it, oops)
  I tried to be creative and stick with mostly halloween themed food. Some of it worked, and others...well, I get an A for effort. Lol

The girls wanted to decorate our walls with all of Sadies stars and trophies from school so that everyone could see what she accomplished this past year.  The sense of pride that Chloe and Aubrie have for Sadie is such an overwhelming feeling.  They have true admiration for her.  I love it!

Mummy hot dogs

Mummy Pizza
Orange vomit punch

Witches hats and acorns

Bloodshot eyes

November 03, 2015

Sick on her birthday

  My poor baby girl started to get sick last week.  Started with a little extra sticky drool that increased and increased and increased to the point that her face, hair, clothes were soaked.  It was gross.  Then came a fever, then came a nasty poo (sorry TMI), then she became extremely tired (to the point of being unresponsive a few times), then came increase in mucus and watery eyes, then came the cough/choking.  We went to the Dr's but nothing really came of that because her vitals were stable (just a low grade fever) and not many symptoms .  The Dr just thought it was a bad virus.  A couple days later she was still not improving, not getting worse, but definitely not improving. Another phone call to the Dr and this time she ordered a chest x ray, blood work and blood cultures.  Nothing showed up from those though.  Everything was normal.  This was good news, but at the same time, why is my baby not getting better? A couple days later I spoke to the Dr again and this time she decided to start antibiotics just to cover our bases.  Finally, she started to perk up on Halloween.  Not sure if it was the antibiotic, or it was just the end of the virus (14 days later).  Slowly, she started to stay awake for longer periods of times and we got smiles again.  Thank goodness!  I could breath again.  Otherwise, by the end of the weekend we were going to take her to the ER and possibly admit her to figure out what was going on.  Now she is completely back to her old, happy self and healthy again (except she still has a little too much drool).  
  It is exhausting having a medically fragile child.  The anxiety is ridiculous.  Even though I knew this was probably just a cold (because her sister also had a cold) the thoughts about what "just a cold" could do to her is like no feeling I can describe.  Yes, Sadie has been sick in the past, but for some reason I didn't have the same thoughts/feelings like I did this time.  Sadie mostly stayed in our eyes sight so that we could watch her closely, but with every sneeze, cough, choke I would hear in the baby monitor would make me hold my breath until I heard her again or I would run to her bed to make sure there was another breath.  If I slept at night I would go check on her frequently, praying with every step to her room that I wouldn't find her anyway but sleeping peacefully.
  When you have a medically fragile child you are automatically in the category of "borrowed time" because many of these kiddos are not given the best prognosis. This means that I live with the reminder that any day could be the last.  Each cold, cough, fever, any illness may be the one that takes my child. The upside of this is that I see each day as a gift, and I do my best to make them count. However, it takes a toll on me.

Sadie does not like being held, but when she is sick she will sit on my lap, cuddle, sleep.  That's how you know she is truly sick.  As much as I love these moments, I would much rather her be healthy and wiggling to get off my lap.

This was her actual birthday.  This is all she did all day. Not a great way to celebrate.

October 26, 2015

Seeker, Avoider or Both?

Guest post:

More about sensory processing disorder:

A Seeker loves movement, being rough and active, loves a stimulating environment, craves salty, spicy foods or extra chewy and crunchy foods, enjoys motion, crashes into walls or floors, loves running and jumping, needs to touch everything, cant sit still, and has poor attention span. Seekers also climb too high, climbing on everything, crashes into people and everything, licks and chews on everything, eating too much, doesn't feel pain like most do, over stuff there mouths, dump out boxes full of stuff and look through everything, engages in messy play with play dough mud, shaving cream and they're loud with little volume control.

An avoider is the opposite as a seeker. They avoid. Picky eaters, covers ears from noise, wont wear shoes, avoids mess and messy hands, dislikes anyone too close to them, doesn't like climbing and swinging, refuses bath time and swimming activities including water, complains about smells, doesn't like to brush teeth, complains about normal lighting that its too bright, over responsive to pain and feel everything more than they should, doesn't like tags and seams on clothes and avoids hugs.

October 24, 2015

How My Daughter Explained Her Sensory Overload When I Couldn’t

A guest blog post.  This hit home multiple times.

  One day when my daughter was 3, she came to me and asked, “What’s wrong with me? Why do I cry all the time?”

  I didn’t have an answer for her, and it broke my heart. She was desperate for me to define things going on inside of her  things she couldn’t understand. She was in her first year of nursery school and couldn’t get through a two-hour day without breaking into hysterics multiple times. Her teachers’ method of choice was to ignore her, and it wasn’t effective. She wasn’t acting out to seek attention. She screamed at birthday parties when they sang “Happy Birthday” and hated to get dressed in the morning, but she couldn’t tell me why. She cried while watching cartoons when a character seemed mad or sad or hurt. So, finally, she turned to the number-one person in her life she felt she could trust: her mother.

  I was speechless. I knew she was acting this way because she had sensory processing disorder, but I was stunned to realize she was aware of it. But how do you explain that to a child so young?

  I sat there, saying nothing. In that moment, I had failed her. That day I vowed never to fail her again. Immediately following this incident, I took her to a therapist to work on communicating her feelings. I found a sensory motor group for children her age and began to address her sensory needs with the help of an occupational therapist. I had a laundry list of evaluations to assess every possible area of her development. I left no stone unturned and over time, with the help of many different professionals, I started to piece together the puzzle of why my daughter felt the way she did.

  Although I started to feel more confident about our situation, my daughter did not. While I was gaining insight, but she was still in the dark. It was taking its toll. I had no idea how to fix it.

  One day at school, my daughter had a meltdown because she wanted to sit in a certain chair for snack time and the teachers wouldn’t allow it. She broke down in front of her peers while they all stared and covered their ears. The teacher had no problem telling me about this incident and said it was her job to teach children they couldn’t always get what they want. She said her meltdown ruined the rest of school day. I was devastated and so angry. I was angry at her teachers for judging my daughter and refusing to notice her cries for help. I was angry at myself because I didn’t know how to protect her. I had this smart, funny little girl who was sweet and compassionate and friendly, but she was starting to look worn and weathered. Her eyes were always red from crying. She walked with her head down and started to become anxious. Any little thing she deemed “wrong” she would nervously apologize for. She was drowning in her issues and I felt helpless to save her.

  Then one day my daughter, now 4, said the most amazing thing. She was bouncing around the house, extremely hyper and I was trying to get her to stop. She turned to me and said, “I can’t help myself, Mom! My brain feels tricky and my heart beats really fast.”

  I was amazed. At this moment, I realized my daughter was explaining her overstimulation to me in her own words. All this time, my daughter knew something different was going on inside of her. Because of the way others (including myself) treated her or talked about her, she thought these differences were bad. All the times teachers and I spoke about her behavior in front of her like she wasn’t even in the room, she knew exactly what we were talking about. She didn’t feel bad about having a sensory processing disorder. She felt bad because we made her feel like she should. After all this time, I had finally figured out what was bothering her, and I felt like I knew how to fix it. I needed to explain her sensory processing disorder to the one person who needed it the most. This is the gist of what I told her:

“Yes, your brain feels tricky. But everyone’s brains feel tricky about something. For me, I’m bad at math. I hate roller coasters and scary movies. They make my head feel funny and my heart beat fast. For you, your brain finds it hard to listen to loud noises or wear scratchy clothes. And that’s OK, because those things aren’t bad. We’ll work on them. I’m here to help you.

“Yes, you have a lot of feelings. But that’s not a bad thing. We can work on controlling your feelings. All those feelings make you so kind and caring toward other people. That’s called being sensitive, and it just means you have a big heart.”


  When I said this, I could see a wave of relief washing over her. It was the start of a brand new chapter for us: For my daughter, who finally found some concrete answers to questions she had about herself, and for her parents, who stopped hiding her difficulties as if they were something to be ashamed of. From that point on, we’ve spent a lot of time talking about her issues in a kid-friendly way. In the last year, we’ve started teaching her ways to recognize the signs of sensory overload and behavioral tools to express her overwhelming emotions in an appropriate way.

  Since giving my daughter this power over her SPD, she walks a little taller and laughs a lot more. She is silly and funny, not sad and anxious. Lately, I hear her say things like, “I am brave!” and she couldn’t be more right. She is, in fact, the bravest person I’ve ever met. She pushes herself out of her comfort zone more at the age of 5 than I ever have in my entire adult life. Her SPD came with an awareness that is far more mature than her five years. And for the longest time that awareness, without any explanation, made her feel like something was wrong with her. Now, we use that awareness to empower her. It may have taken awhile to get here, but it was well worth the wait.

A version of this post originally appeared on My Sensational Girl. 

October 22, 2015

Did this just happen?

  A few weeks ago we were at a family gathering trying to do a family picture with about 45 relatives or so.  It was hot and humid, with a misty rain too.  Sadie was having a hard time regulating her temp. And because of the time restraint that we had with the photographer, we had to move quickly from one place and position to another.  Two things that Sadie hates.  She was one very, very unhappy child.  I haven't seen the pics yet, but I'm pretty darn sure they are the worst pictures taken of our family.  But that's ok, it was my grandmas wish to have a big family picture taken.
  After it was all said and done I stripped Sadie down to her diaper, left her alone for awhile.  After about an hour of her telling us off in her own way, she finally calmed down.  She took a little nap and then became her happy little self that she normally is. 
  Later, it became a really nice evening so we went outside to watch all the kids running around and fishing in the pond.  She loves to watch the action.  Then I noticed that Sadie was trying to sit up. She's been doing this a lot lately.  She curves her body around and then leans up on her elbow.  If she would just put her hand down she would push herself right up into the sitting position. *sigh* Someday this little girl will get over her hand sensitivity and use them. But for now we will work with what we have.

These pics are not from that day, but it shows you how she moves her body around to the sitting position and then uses her elbow and sometimes even her head to start the sitting process.  

  As you can see, she curves her body to the right and then she "gets stuck" and can't go any further so from that point I usually guide her body into the sitting position.  On this day, I did exactly that. I held my hand on her thigh and waste to steady her and usually at that point she throws herself backward and starts laughing.  Well that day, I noticed that she was concentrating on the ground. There was no smiles, no throwing herself back, but a very serious face.  Then I saw her put her hands down on the ground and hold her upper body up.  SHE DID IT!! SHE USED HER HANDS! A miracle has happened. My heart was a thumping so hard (I realized later that I was holding my breath, lol) I didn't want to move, but I wanted proof that this moment was happening.  I called to my sister, told her to move slow so she didn't scare Sadie and told her to start taking pictures.  I needed to get this moment on camera.

Proof that she did it.  She touched the ground with her hands and she wasn't complaining.

Sadie didn't stop there.  Oh no, she took it one step further.  After I had my sister take these pics and I got over the shock of the moment, I noticed she was still concentrating super hard, slowly I took my hand off her thigh and guess what?!  SHE DID IT!  She sat unassisted for almost a minute.  

View from the right.

View from the front.

View from the left.

  I had to get the a pic from all angles to remember this moment.. I was so happy for her.  She conquered one of her fears.  She is hitting a milestone right in front of my eyes.  I seriously can't describe the feeling I get when she accomplishes these moments, these fears, these milestones.  It is like no other feeling in the world.

Sadie was smiling so big.  She knows when she accomplishes things and is proud of herself.

(By the way, she did this about 4 times that evening)

October 21, 2015

Sadie's thoughts

I read this poem and it just hit home in so many ways.  Just wanted to share "Sadie's thoughts"

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.


I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.

I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.
I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.


I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. 

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.


I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life - you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.


I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

*Not sure who wrote this or where I got it from.

October 19, 2015

10 Things to Never Say to Parents of a Child with Sensory Processing Disorder

I know this entire month I have been posting a lot of guest posts and things from others blogs.  But the truth is, is that I am still learning a lot about sensory processing disorder.  So I'm trying to educate myself along with you.  This post was written for sensory processing disorder, but it also applies to all special needs.

*Guest post

Some things should be common sense. So it would seem. However, when your child has struggles with a disorder that causes frustrating behaviors, sometimes you get some strange looks, and you definitely get some off-beat comments. Today, I am sharing the top 10 things you should never say to parents of a child with sensory processing disorder.

I want to start by saying that before I knew about sensory processing disorder, I probably said some of these things too. In fact, I want to admit that there are times I still think them in my head when I am self-doubting everything we are doing to help our son. So, that’s the real reason for this plea.
You see, parents of children with sensory processing disorder are fragile. We carry a lot of guilt and we are constantly wondering if it is our parenting skills or our child’s ability (or inability) to process information. These phrases just cut us down and add to that guilt. They make our skin crawl and they make us want to scream.
Rest assured, though… those screams are screams crying for acceptance not screams of hate. In fact, we are screaming because we want so badly to explain what our children need to strangers like you and our loved ones, but it’s just so hard.

Top 10 Things to Never Say to Parents of a Child with Sensory Processing Disorder

“It’s just a phase.” | No, no it is not just a phase. A phase is liking a red shirt over a blue shirt. A phase is not screaming because your socks don’t feel good.
“He’ll grow out of it.” | He will grow. He will change. It is our goal to help him learn how to self-regulate, but he can’t “grow out of it” on his own.
“All kids do that.” | You are right. All kids have sensory processing preferences.  However, it doesn’t keep all kids from going to the grocery store, a public bathroom, or a birthday party, does it?
“She just needs more discipline.” | Oh, believe me… we have tried all kinds of discipline. In fact, we still parent her, we’ve just learned what is sensory related and what is her pushing buttons.
What not to say to a parent of a child with sensory Processing disorder

“Back in my day, that was called “being a kid”. | Back in your day, we didn’t know as much as we know now about the human brain and sensory processing.
“She looks so normal.” | She is normal. Thank you. However, her brain works differently than her peers.
“Your kid doesn’t look autistic.” | Let’s not even go there.
“He knows exactly what he is doing.” | Maybe. Most likely not. Either way, we are working on teaching him socially acceptable ways to manage his reactions.
“He just needs to run off some energy.” | Have you seen our house? We have a swing, a crash pad, a trampoline, a climbing wall, a sit and spin, sensory bins, and ropes… I am not sure “getting his energy out" is all that is needed.
“If he was my kid…. “| But, he is not. Please don't tell me to spank him, ground him, reprimand him when you don’t know what we’ve been through.
This is just the tip of the iceberg to the things that I hear on a daily basis. Here’s the thing. I know that the people saying these things to me just don’t know any better. They have never had to love a child with sensory struggles (or they didn’t know that was what they were dealing with). They have never had to endure the pain of trying absolutely every parenting strategy only to be left with frustrations. They have never had to watch their child sit in agony over a pair of socks.
My Child is not giving me a hard time quote

I could end this here and be done. Say my peace and feel like I have done my part. However, I don’t think that is enough. I want to help educate. I want to help spread awareness until there is acceptance. So, I have gathered 10 things you can say instead if you ever meet a parent with a child with sensory processing disorder. THEY WILL THANK YOU .

Helpful Things to Say to the Parents of a Child with Sensory Processing Disorder

She seems to be struggling with something…
How does that affect her day to day?
I know you’re a good parent.
We should get coffee sometime so I can learn more.
How can I support you?
Now that I know, what can I do to connect with him?
You’re doing a great job!
I’m here for you.
I believe You.
That last one. “I’m here for you. I believe in you. ” Those words are so powerful and mean so much, especially to a parent who feels judged, worn down, and alone. So the next time you meet a parent of a child with sensory processing disorder, stop before you respond with “if he was my kid…” and replace it with “I’m here for you. I believe in you.”

October 16, 2015

Managing Melt Downs 101

*Guest post
Managing Meltdowns
Managing Melt Downs 101
I don’t care who you are – at some point it’s going to happen to you. I am talking about managing melt downs. Celebrities define their careers with them. However, for parents of special needs children melt downs, or drama, are part of daily life.
Recently, I shared with a friend about our struggles in managing our son’s melt downs. She laughed and said my tips apply to her college age children and husband too. There is always comfort in knowing you are not alone. My husband and I only have seven and a half years experience. However, we have cried, yelled, screamed, laughed and made enough mistakes to qualify for an audition on the reality show, “Super Nanny.” We are no experts but hope to share our experience in order to encourage others.
So here are the seven habits of barely functional parents…..errrrr – I mean seven ways to manage melt downs. It is dedicated to other parents of children with special needs:
1. Plan – set the expectation – plan – repeat – pray:
Early on we did visual schedules, role playing and flash cards to sequence the events of an outing. The iPhone even has apps for this preparation. Now we run through a verbal sequence. It’s not bullet proof but it does set the expectation, and allow you to identify load noises or other sensory road blocks. We do a lot of repeating. We also find it is often a way of “talking our son down” from the edge of melt down. Faith and deep breathing are a big part of this drill.
2. Don’t worry about other people:
I struggle with this one. We live in a small community, which by definition means; you know a lot of people. I can’t tell you how many times my kid was throwing a fit and I felt the eyes of a judging on-looker. It helps deflect the stares with a comment like, “I am open to your ideas. What would you suggest that I do?” I find this one sends them scurrying. It sort of confronts them and forces them to give an answer. Often I have been surprised by comments of compassion and encouragement.
3. Go in with an exit strategy:
My husband and I joke that the invasion of a foreign country requires less planning. We identify our roles; who will take the kid outside and who will remain to pay the check or grab the needed item. It is also important to claim victory when you have not needed to implement the evacuation plan.
4. Check your sanity at the door: (This supports number 3)
If you have a cart of groceries and your spouse or partner is not with you, leave the scene. Your sanity is worth more than enduring an escalating melt down. Remember, kids feed off of your furry. If you start to lose it, the situation will escalate and mutiny is just minutes away.
5. Always have a motivator – but don’t count on it:
We are big advocates for Applied Behavior Analysis (ABA) strategies. In basic terms your child has to demonstrate the appropriate behavior/task to get the reward. Some may call it bribery but there is more to it. It does work but part of your plan is to determine what you will do to get your child to comply when the motivator loses its zeal.
6. When all else fails – rely on humor!
When I think back about some of the things I have done, I have to laugh to myself. I am quite sure I will never earn the “Mother of the Year” award. Recently, I was desperate to get my child off the floor of a store. I was not going to give in. Knowing that my son is deathly afraid of parrots, I pointed to the ceiling and yelled, “Incoming! Incoming! Incoming! The parrot is coming for you!” My son jumped to his feet and yelled, “No Mom! Save me!” An onlooker appeared horrified. I smiled triumphantly and softly said, “Don’t judge me. It worked!”
7. Remember it is a journey not a race:
This last tip is one that another parent gave me when I felt down, beaten and completely defeated:  “Every roadblock I’ve faced with our son has taught me something, even if it was very, very small. Those little, tiny pieces of information eventually all come together and it’s possible to see the bigger picture. The hard times can be very, very hard. It’s so hard to see that it will get better, especially when we start to doubt ourselves and wonder what it is we did to be where we are. You have to realize that you were chosen to be your child’s parent for a specific reason. What’ll happen next – you’ll see some HUGE leap that you never expected. You realize that the melt down was just a bump…a blip on the screen, and you’ll wonder why you got so upset about it. You WILL understand it and it’ll all start to make sense. Keep your faith…it’s the only thing that will get you through the really rough patches.”
The most important thing to remember is that melt downs are not about you. They are about your child trying to process what is happening to them. The world they are experiencing is not the same one you are absorbing. Developing coping skills for these special kids takes a lot of time, energy and planning. In short, your patience and persistence will help them prevail. Celebrate those victories and pass them on to another family. There is no greater gift than sharing peace and understanding.


Finding a new bed

   The time has come for us to start thinking about Sadie's next bed.  I never thought it would be that stressful to pick out a child's bed, but I am so thankful to be able to have this stress.  4 yrs ago I was given a not so great prognosis for Sadie, so to be able to even think about getting a bigger bed for her for her 4th birthday is like a dream come true.  However, with this dream come true and everything else "special needs" it comes with a pretty hefty price tag. Just to keep my child safe in a bed where she won't fall out,  it will cost somewhere between $5000-$9000.  Seriously ridiculous!!!!  That is just a bed frame, doesn't include the mattress.  For my other girls for that same price, for the same quality (if not better in some cases) of furniture we could get a bed frame, mattress, a dresser (or two), night stand, and desk and chair.  It's so frustrating how expensive special needs stuff is! 
  Here are some examples of some of the beds that I have picked out for Sadie. I'm lucky to be able to have so many choices. I don't want it to look like a hospital bed. I know that might be kind of vain of me but this is my home, her bedroom.  The less medical it looks and feels the better off all of us are. We already have a big oxygen concentrator, a suction machine, a pulse ox machine and a feeding pump in there (which I am grateful for, don't get me wrong), but that's enough hospital looking stuff for me.  One of the things that I have to consider is how high up do I want the sides to go.  Is she going to be strong enough in the future to pull herself up to sit/stand, accidentally fling herself over the side railing?  I don't know. But this will be the only bed that we will ever purchase for her so I have to think about those things.  I also have to think about if I want to the head of the bed to raise up, for aspiration or reflux reasons.  She doesn't aspirate or reflux now because of her nissen fundoplication (those loosen up over the years), but a lot of kids with CdLS and PTCD/PCH do so who knows what is going to happen as she gets older. That also has to be thought about.
  Decisions, decisions!  At least I'm able to make them for her.

Image result for special needs bed

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*If anyone reading this has any experience with any of these beds please email me or leave a comment.  It truly is overwhelming since I can only see these beds online.  Thanks