Friday, March 28, 2014

Playing Catch up- Take 2

So last time , we talked about how Fishing Pole kept me busy with his surgeries.. And is still keeping me busy while he's still on restrictions..

I'm going to try to summarize because we can all tell by now that I am no good at sticking to a plan or this post would have been up last week!

The week following Fishing Pole's surgery was a busy busy week.   On Monday, Dimples had an appt with a Psych to confirm all of our thoughts/fear (pediatrician, us parents, & his teacher).  Dimples was diagnosed with Autism.  Techinically, Asperger's syndrome but as "they" are soon to be doing away with that term and just incorporating it all under the Autism Spectrum Disorder umbrella, we'll just say high functioning Autism.   In the future, I may refer to it either way.   :sigh:.  This is a diagnosis that we've felt was coming for years now.  He has so many classic autistic symptoms, I'm surprised it took this long to get it.   FYI- if you want to incorporate an autism dx into your IEP (currently has a speech IEP), the school (at least ours) states that they do not recognize a doctor's diagnosis of Autism..  WTF?  I can feel a new fight coming on..

On Wednesday, Southern Darlin' had an MRI scheduled for her Brain.. Just to recheck the cysts we'd found there the previous year.   With some great Momma conning, I was able to get them to fit Dimples in for his MRI at the same time (to check for tethered spinal cord).  I do love our Children's hospital in that they always try to accommodate if they can.

Since both kids were being sedated, Daddy Chaos took off work and came along. We split up , I went with Dimples, Daddy went with Southern Darlin'.   In reality, Dimples went back a few minutes prior to Southern Darlin' so I was able to be with each of them as they drifted off to sleep.  Our hospital uses general anesthesia for MRIs vs iv sedation.   Probably a good thing since Southern Darlin' was getting a brain & full spine MRI which lasted 4.5hours.  ugh.
S.D. still doped up from the MRI :)
Dimples making a silly face.. Showing off Ducky Monkey's gown that the nurses made..

Both kiddos did great and then we were off to Southern Darlin's neurosurgery appt.  I LOVE our neurosurgeon.  She did both of Fishing Pole's back surgeries and is very personable.

Good news- Southern Darlin originally had 2 small cysts in her brain.. The smallest one has disappeared completely! Woohoo!  The other one, the one we worried more about, has shrunk just a teeny tiny bit.  Woohoo!!  The Dr was thrilled to pieces!!!  We are free from MRI's for a few years now, she does want to recheck again during puberty to make sure nothing starts growing.   Awesome appointment!!

Since we were there, the Dr asked how Fishing Pole was doing (remember this is 1 week post surgery) and I mentioned that Dimples just had his MRI done to check for tethered cord as well.. She immediately said, let me just go check on that for you..  She came back a few minutes later and we just turned our appointment into one for Dimples as well.   Yes, he most definitely had tethered cord as well.  ugh.   We knew this was probably coming but it's still not fun.   Our Dr is amazing (have I mentioned that yet) and we went right into discussing surgery options ect.  She decided since Fishing Pole had retethered and she had to go higher up for the second surgery, she would like to just go at the higher spot to start with for Dimples and hope that he wouldn't retether..   We walked out to schedule surgery..

Imagine our surprise when she had room the FOLLOWING week!!  Egads!!  We opted to go ahead and get it done. Hoping that the sooner it was done, the less likely chance he'd have of long term issues like FIshing Pole..

Surgery went well for Dimples.  He is most definitely NOT his brother when it comes to surgery/pain.  While Fishing Pole had to be repeatedly told to calm down, walk carefully, ect.. Dimples had us carry him everywhere for about a week.  He was only in the hospital 2 days, thank goodness .. Immediately upon waking up from surgery , he wanted to GO HOME..He does not do well with strange people & places.. :(   Hello Autism, thank you so much... 

It's been several weeks since the boys both had surgeries.  While they are still on restrictions, they are doing better every day.   We have noticed a decline in Dimples at school. His teacher described him as "delayed" thinking he was on pain meds that were fogging his mind but alas, he's been off all meds for a while.. :sigh:

On a completely happier note..  We celebrated birthdays of 2 of the 3 boys!   Fishing Pole turned 8!! and  Attitude King turned 16!!!   It's hard to imagine that they have both grown so much!  Makes a Momma a bit sad seeing all her kiddos growing up :(

Stop growing already !!

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Unlocking the Social Potential in #Autism

Unlocking the Social Potential

Hi guys.  I wanted to share this with my other special needs mom.  I haven't had a chance to read this one yet but it is on my TBR list!!  Having a child who was recently diagnosed on the spectrum, I'm reading all I can.

Unlocking the Social Potential_Final_Shadows
To your dismay, your child has received a diagnosis of autism. Along with this alarming news comes the barrage of emotions that suffocates you like an avalanche— denial—confusion—depression—guilt. You want to fix your child; you have a million questions; and you want answers immediately. Autism is a journey in which the child and her family navigate challenges and experience achievements along the way. To guide you in this rewarding journey, Dr. Karina Poirier offers her expertise in this book that parents will find incredibly useful. In this book, you will find the answers you’ve desperately been seeking. Dr. Poirier has provided in simple, easy to comprehend language, an overview of child development, a descriptive explanation of how autism affects each developmental area, and guidelines for advancing your child’s functioning in all developmental domains. You will appreciate the multitude of hands-on, full-color sample lessons for teaching social and emotional skills, language, problem-solving and decision making, and play skills to children with autism.

 Publisher: Social Cognition Publications | Irvine, CA
Color: Full-color illustrations
Pages: 300  
ISBN (Print): 9780988798205
ISBN (Digital): 9780988798212

 Available: March 2014
Available at:

Improving social and communication skills in children with autism

Dr. Karina Poirier, author of Unlocking the Social Potential in Autism, says that understanding a child’s unique needs is the key step to dealing with concerns and developing their strengths. “Bring everything into the light. The worst thing you can do,” she said, “is to ignore the issue. Parents can help their children learn how to communicate better and develop social skills that will help them thrive later in life. Get help early, identify the specific issues you are facing, ask questions, learn everything you can, and devise a concrete and detailed strategy for engaging your child so key skills are developed and strengthened”.

Here are her answers to some key concerns that parents of a child with autism are faced with.

Q: My child can sit through a learning task on the iPad or television; however, he becomes restless and fidgety when working with a teacher. Why?  
A: Your child’s attention system is reactive. Consider how much children learn from viewing television. Teachers struggle to get children’s attention when an activity does not include the sensory kaleidoscope children are used to receiving when sitting in front of the television.  
Key Action: Children must be taught at an early age how to develop the mental tools (attend, remember, think) to engage in deliberate and self-directed learning experiences with an adult’s guidance.  

Q: My child does not respond appropriately to mood changes in others (e.g., when a peer’s mood changes from happiness to distress). Why?
 A: Your child may be lacking the ability to read nonverbal cues. Children with autism often have impaired ability to read, interpret, and process social and emotional messages. Children who are unaware of others’ thoughts and feelings risk not developing the sense of self.  
Key Action: Treatment to teach the child the emotional codes that are part of the social experience. The child needs to develop the ability to understand other peoples’ emotions from their facial expression, tone of voice, and body posture. The child should be taught to recognize and interpret how people around him think and feel.  

Q: My child has difficulty with describing his/her day at school, recounting an experience, or relaying a message. Why?  
A: Delayed recall skills utilize episodic memory. Episodic memory allows us to remember past events and share these events with others. In other words, it is how we engage in reciprocal conversations with others. Episodic memory produces a conscious awareness of events that have occurred at any one time; it enables people to remember what happened to them in the past or to conceive the future.  
Key Action: Effective treatment is required for the child to learn about memory strategies and to practice remembering. Through repetition, the child develops not only better recall of past events, but also the skills to communicate the memory of the event to peers or adults during a conversation.  

Q: My child is verbal and has good command of language; however, he has trouble initiating conversation with others and taking turns during a conversation. Why?  
A: Children with autism have difficulties in social initiation and social-emotional understanding. Engaging in a reciprocal conversation with others requires the development and interaction of memory, information processing, and expressive communication skills—all of which are pervasive deficits of children with autism. It is not that these children do not desire involvement with their peers. On the contrary, they do have the desire to be socially engaged with others; however, the dilemma lies in the fact that these children lack knowledge of social norms.
 Key Action: Effective treatment that emphasizes social norms and rules, and teaches children how to process social information by distinguishing between relevant and irrelevant information in a social situation. Initiating and maintaining a conversation requires a person to have social knowledge, which is knowledge of event schemas.

 Q: How much play time is appropriate to include in my child’s learning routine?  
A: For a young child, teaching through play is extremely important. Play gives children something to do with their ample free time; it also serves the important purpose of honing children’s physical, social and emotional development. Play does not occur spontaneously in children with autism the way it does for typical children.  
Key Action: Investing significant time teaching through play focuses the child on developing fine and gross motor skills, interpreting the social cues of other children and adults, and responding to those social cues appropriately. Play can be used to develop the ability to interact with, explore, and, ultimately master their surroundings. Play is an essential part of the learning process, and its ability to mimic real-life scenarios makes it an ideal way to stimulate overall development.

Karina Poirier, Psy.D., BCBA-D Dr. Karina Poirier is the Director of the Center for Social Cognition , a board certified behavior analyst at the doc-toral level (BCBA-D), and a certified cognitive educational therapist. Her clinical practice is devoted to providing outstanding individuals and group therapy that improves social and cognitive outcomes for individuals with autism, ADHD, Traumatic Brain Injury, and related disorders. Learn more at


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Monday, March 17, 2014

Playing Catch up yet again...

I can't believe the last time I posted here was in January!  Geesh!  Life has been crazy and hectic and stressful and quite honestly - for most of it, I spent a lot of time in denial which means I couldn't write about it here if I was avoiding thinking about it myself.

Let me try to do a brief catch up..  ha.. I think we all know how I do things briefly.. lol.

2 back surgeries (different kids)
1 pacemaker replacement
2 MRIs (different kids)
1 new diagnosis
2 birthdays
and sadly, 1 old friend no longer with us.   Avoidance is my friend.   But we have gotten thru it all and for now, I think we have smooth sailing ahead of us.

Let's start at the beginning...

Fishing Pole has always had urological issues.  He's had surgeries (spinal cord and urological) and takes meds to help.. We noticed this fall that they were getting worse again.  He ended up having another CT to determine if his spinal cord had retethered.   Unfortunately, it had.  The decision was made to do another back surgery to untether his spinal cord yet again.  His neurosurgeon assured us how very rare it was for him to retether like this..  What can I say?  This kid is the definition of RARE. 

Tethered Spinal Cord --
Tethering of the spinal cord is a neurological disorder in which the spinal cord becomes attached to the spinal column via surrounding structures. Normally, the spinal cord hangs loose in the canal, freely moving up and down with growth, bending and stretching. A tethered cord does not move. It is pulled tightly at the end, reducing blood flow to spinal nerves and causing damage to the spinal cord from both the stretching and the decreased blood supply.
Tethering can happen before or after birth in children and adults; and most often occurs in the lower (lumbar) level of the spine. All forms of SB can be accompanied by spinal cord tethering; but it rarely occurs with Spina Bifida Occulta (SBO). In children, a tethered cord causes the spinal cord to stretch as the child grows. In adults, the spinal cord will stretch during the course of normal activity which like bending and stretching. If a symptomatic tethered cord (tethered cord syndrome) is left untreated, it can lead to progressive, permanent spinal cord damage.  Credit  (I should note that Fishing Pole has not been officially dx with Spina Bifida.  Due to his pacemaker, he cannot have an MRI.  He does have the Spina Bifida Occulta defect which was shown on a Xray).

When the discussion came up of doing another surgery, we were asked how his other health issues were.. Was anything else coming up that we could combine?   Actually his pacemaker battery has been low and we were checking it monthly, but his EP hoped to get us to the summer before replacement. Neurosurgery suggested combining the back & pacemaker surgery and doing them at the same time. One big surgery , one recovery..   The real question was- would cardiology be willing to work together?

We got the call the following week that Neurosurgery & Cardiology had come to an agreement on doing the surgery and we had a date less than 2 weeks away!   Eeek!!    We had definitely wanted the surgery as soon as possible because while doing a surgery to untether the spinal cord- it is to prevent further damage.  There is no guarantee that current symptoms will be corrected.  We cross our fingers and hope for the best.

Fishing Pole had his marathon of surgeries on Feb 17th.  He is my super hero.  This was #12 & 13 surgeries and he goes into it very matter of fact.  Laughs and jokes with the nurses.. No worries.  When I would ask him if he was concerned about the surgeries at all, he would look at me like I was crazy and respond " I will be ASLEEP when they do it, Mom.  Why would I worry?  I'm not going to feel it!" 

F.P. with all his surgery buddies..
First they did his tethered cord surgery , then they flipped him over and cardio did his pacemaker replacement.  We are super excited about his new pacemaker (still in the tummy.. ugh) because it came with the newest updates and services..

The Merlin @ home transmitter sits in his room and every night while he sleeps it reads his pacemaker to make sure there are no issues with the lead or battery..  Every 3months or so, it will send a full report to his cardiologist !  Since this boy has broken his lead twice already  and once we found out during a routine check, this technology makes a Heart Momma happy !!

Fishing Pole recovered quickly.  He has always had a very high pain tolerance. So our first night and following day in the hospital , he was quiet and doped up.  The second day he was bored and moody.. lol..  We spent 2 nights in the hospital and were sent home.  Keeping this boy calm and laying down was NOT fun..  He is still on restrictions until late April (no gym, no recess, both feet on the ground at all times -- no running, skipping, hopping, jumping ect).  at 2 weeks post-op the surgery scar (on his back) basically merged with his original one and is full healed.   His tummy/pacemaker scar is looking pretty good as well. Naturally it'll take a bit longer to heal because it's within easy access of picking fingers.. lol.

I think that's enough for today.. I promise to be back soon with more catching up :) 

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