A Whole New World

...a dazzling place I never knew... (now I know that I'm not the only one who was singing this song from Aladdin).  There is a whole lot of princess love going on in our house these days.  And our sweet Ava is trying so hard to find her identity as a little girl, but is often found playing Star Wars or Legos with her brothers!  Yes, baby J has well developed skills with a light saber!  He was taught by his Star Wars obsessed older bro.  And they like to battle each other.

But really, there is a lot of change happening and it feels like a whole new world.  Let me explain - D recently had an assessment for wraparound services, which was just another step to have services in place should he need support in the classroom.  Or so I thought.  He was interviewed and observed by a wonderful psychologist.  Within 10 minutes, Dr. S was asking some very specific questions about D and handed me an additional questionnaire to fill out (carefully folded so that I could not see the name of the assessment).  I could tell that he was seeing something more or different than we found with the prior testing results.

The results of this evaluation literally Rocked. My. World. Our precious Dylan was diagnosed with Asperger Syndrome.  With this diagnosis, the psychologist felt he needed 8 and a half hours of behavioral health services per week (I was expecting 4 hours max).  These services will be provided both in the classroom and at home, or in a community setting if needed.  We were advised that he will need an IEP.  Additionally, Dr. S strongly suggested that D be in a full day of Kindergarten.  So, here we are 3 weeks before school starts feverishly looking for a full day Kindergarten as our district is only half day.  And we want one that is not too far from home because I know that he'd never make a long bus ride.  I will update on our decision later.

Right now, I'm wavering between gratitude that we have a more specific diagnosis/plan of care and anger that this was not picked up earlier.  I was asked during this evaluation why we did not do early intervention.  And my dumbfounded answer was this - we didn't know there was a problem.  Feeding my anger, I recounted the questions and concerns that I brought to D's pediatrician when he was about 2 years old (the constant humming/obsessing over toys), which were shrugged off due to his well developed communication.  The early intervention test did not pick up on any issues when he was tested in November.  In fact, he scored a 93 on the evaluation where at 65 or below is a qualifying score.  And it took 3 different psychologists to finally figure this out. 

Yet, when I waver toward anger/resentment, I am reminded that none of this is a surprise to God.  

Our God knows the plans he has for us, plans for hope and a future (Jeremiah 29:11). And on days when I'm overwhelmed at the very thought of getting out of bed to face all that needs done, I need to rest in that.  Truth be told, all of this is too much for me, but thankfully it's never too much for Him. 

Thanks again for following along this road.

xoxo,
Chele

Another Long Overdue Update

Hi Folks.  Thanks for following along this road, though it is harder and harder to find the time to update and sit down to write a post during reasonable waking hours (2 am is not the best time to collect my thoughts...).  For the time being, the kids are playing and Jack is not crawling all over the place.  So here goes a quick update!

D is going to be evaluated/tested for wraparound services.  From what I have gathered by setting up the appointment and filling out initial paperwork, it seems it will be more of the same testing.  It will be interesting to se if this psychologist comes to the same conclusion as the first.  The goal here is to have services in place *if* he should need them at school.  

Speaking of school....

School starts in the end of August.  And while the little D man is super excited (as is Ava for her pre-school), I am feeling nervousness and anxiety over how he's going to manage the classroom setting.  I am so glad that he is anticipating the start of Kindergarten!  Yet, I worry about how he will get along with his peers, respond to the teacher, and manage performing required schoolwork when it doesn't line up with his desires.  I spoke with the principal of his school, and she asked that I send along his paperwork/diagnosis information and we could basically just handle issues as they crop up...I trust her experience in this area and pray this approach works for D.

There are some logistical issues that have me worried as school starts.  Our district only buses the kids one way, with no mid-day buses.  So, I am left to drop Ava at preschool at 12:30 pm, then Dylan to his school by 12:45 pm...with a toddler in tow.  Whew!  

Please keep us in you prayers.   For Dylan's testing this week and for him to have a smooth transition to school and the work that it entails.  For me as I begin to play "Mom Taxi" driving the kids to/from school.  For Ava as she starts in preschool and learns how to play with others besides her brothers.

Well, Jack has emptied the DVD's and is now pulling at my leg... I thinks it's my cue to sign off.

I'll be back with an update after the testing on Friday.

Thank you for your support!

xoxo
Chele

Labeled

Hello there...it's been a while, hasn't it?  Let's catch up, shall we...

I left off telling you that we had an appointment for D to be tested by a child psychologist.  The goal was to see if he fell on the Spectrum.  I was present for the testing, and as I suspected, he did very well.  This is typical of D - he does fantastic with one on one attention.  Actually, both the psychologist and I chuckled out loud when D was asked to describe a few items.  The first one he was asked to describe was a "cup".  And his explanation was this: 

"A cup is a round cylinder that is open on one end.  You pour water (pause), or some other liquid (pause), into it to drink"  {insert hand motions throughout}.  

Kindergarten class get ready...

Here is what 3 hours of testing yielded - 
D was diagnosed with Pervasive Developmental Disorder, or PDD.  The testing that specifically looked at Autism indicated that he was a very mild autism (ADOS score of 7, where 7-9 is mild autism), but he did not think that D was truly a case of mild autism or Asberger's Syndrome.  There were a few key things that caused the psychologist to choose a PDD diagnosis over Asberger's, including eye contact and his use of hands when talking.  

The psychologist suggested that we pursue an application for medical assistance, which is required just to be evaluated for his recommendation of wraparound services.  However, the explanation of the "requirements" to qualify for such services left my head spinning.  I believe this was his suggestion to help D through some of the social difficulties that is having.  And I don't think that I have done a very good job explaining that aspect, so here is a little more on that...

D is quite smart, often being mistaken for being older than he actually is (he is also a bit tall for his age).  He is personable and friendly to most every adult that he meets.  Yet, he struggles when playing or interacting with kids his own age.  He's got quite an imagination and he plays hard; sometimes so hard that you can barely get his attention.  He could quite literally run a peer over and not really know/acknowledge it because he's so wrapped up in whatever he is playing (these days it is most often Star Wars or Angry Birds).  He does not read social cues from others (adults or children).  For example, if someone is backing away if he's talking too close or giving verbal cues to stop/not do something.  I constantly coach him through these experiences - asking him to look at their face or listen to their words.  And thankfully he is making progress, especially with his siblings.  But it's still very difficult; and play dates give me anxiety...

It is a very strange dynamic to be able to fully trust my 5 year old to hold his infant brother while I clean up lunch, but not be able to let him run freely in a playground filled with his peers.  I digress...

Continuing to update things related to the D-man, we all continue to eat gluten free/dairy free (for the most part - Mom and Dad may have cheated on a dinner date!).  Keeping D's diet more balanced and being intentional about what we eat has made a difference for all of us.  His pre-school teacher and OT noticed improved attention within the first 2 weeks of the dietary changes.  And we are at a point where we have let D have a treat here or there, on special occasions.  He's doing very well with the nutritional aspect of things.  We may begin to add some things back into the diet, but that will be determined at a follow up soon.  

His OT reports that he is making significant progress and will likely meet all his goals by the end of the summer.  His fine motor strength has improved so much, as well as his handwriting.  He still struggles with visual attention and difficulty disassociating his eyes/head when following/tracking things.  However, his current therapist left the practice, so I don't know who is picking up D's case.  And I don't know if they will keep the same timeline.  D has a hard time with change, and I actually have not yet told him that his therapist is gone.  Wish me luck on that one :).  I just hope that he is placed with an OT that he "clicks" with to continue therapy.  

He's headed to school in the fall.  He will be labeled with PDD and is now a special needs kiddo.  I never thought in a million years that I would be a mom to a child with special needs.  So, what are we doing now?  In short, nothing.  I have wrestled with these findings, and have put everything on hold over the last month to take it all in and pray over what is best for D.

As I have tried to filter this information through God's lens, I know that we are not what any label says about us - and that our God sees D as his child, not just a kid with PDD.  He is a child of the One True King (if you know that song...if not, be encouraged by Matthew West here).  And the label only sticks if we let it (from a great book for kids - Your are special).  This won't define D if we continue to point him to the One who made him, and remind him that God doesn't make mistakes.   

Thank you for your patience with this little ol' blog.  We appreciate your support.

xoxo,
Chele

Real Life Lessons

It went a little something like this...

"Mommy, can you help me put on this pretty dress" (the 4th one and it's only 9 am). 

"Not right now, mommy is trying to get ready for work"  

Repeat a few more times.  

Insert growing frustration that I am unable to put on 3 articles of clothing without interruption... and forget about drying my hair or applying a little make up.  And then she asked again...

And I responded.

"Ava! Mommy can't help you now!  Go play something else, you don't need another dress...Geez..." 

I am ashamed of the tone that I used with my innocent little 3 year old.  Honestly, ashamed. 

My stress level has been through the roof lately.  There is a lot going on and it's overwhelming trying to manage it all.  It's overwhelming from the simple tasks of running my home {and the monstrous piles of laundry could swallow a small child....hmm...maybe just for a few hours??} to the decisions we need to make with D's new diagnosis {more on that later}.

The truth is that my time with God has taken a backseat with all that is going on.  And the further I distance myself from Him and His Word, the more impatient/irritable I become.  And my children feel the brunt of that.  

Just like my 3 year old who simply wanted some acknowledgment and a little bit of my time, I too desire someone to understand how I am feeling.  Someone to help me through and to offer me encouragement.  What I have found to be true over and over again is that God is the only one who can fully fill that void.  Every human heart, no matter how good intentioned, will falter {see above :-)}.  Even if we run away for a while or are overly needy, He doesn't respond to us the way I did to Ava.  He is full of grace and mercy.  He loves us anyway, flaws and all.

He is refining me every step, and often through seemingly routine happenings in our home.  The moment I heard my voice raise at Ava in frustration, I was convicted.  It wasn't the dresses or the sweet little girl that was the problem, it was my own heart.  I am thankful for this real life lesson from my 3 year old.  I am sure there are many more to come...



xoxo,
Chele

Nutritional Consult

Thanks for sticking around, even though my posts have been minimal as of late.  It is for good reason.  I am soaking up every moment that I can with the fam - and enjoying the glimpses of warm weather we have  had!  I hope you have too!

As I noted in a recent update, we decided to meet with a nutritionist (Dr. Shaw).  We sent away a hair sample as this the superior way to determine if heavy metals are present.  Here is what D's sample yielded:

• No significant heavy metal levels
• Very low mineral levels
• Very low Chromium levels
• High Iodine levels

It's a mix of good news and not-so-good news.  With no heavy metals in the toxic levels, there is no need for oral chelation.  That's the good news.  The concerning news is that all the major minerals are low, indicating that he is not absorbing minerals as he should.  Of most concern is chromium, which is a very important mineral in regulating blood sugar levels.  The high iodine levels in the hair suggest that it is NOT being absorbed elsewhere.

So, what does all this mean? 

The fact that D's chromium levels are so low indicates that he already has trouble regulating blood sugar (it spikes then drops rather than a slow, controlled burn off).   The malabsorption of minerals is likely due to inflammation in the intestinal tract, which is likely due to an allergy/sensitivity to gluten and/or dairy.  And we were given a diagnosis for D regarding the nutritional findings - hyper-reactive hypoglycemia. 

The remedy is pretty simple. Yet it is requiring us to re-evaluate a lot of things we eat and do as a family.  Here's our plan:

• Supplement chromium to help regulate blood sugar
• Continue with current multi-vitamin and Omega 3's
• Add Vitamin D
• Add "Attention Gels", which is a supplement to help, well, you guessed it...attention!
• Remove the common high allergy foods - wheat and dairy
• Remove sugar (ouch, hard one!!!)
• Make sure that all meals/snack have protein component
• Buy Iodized salt for use at home

We have emphasized making D a part of this process, from candidly talking about the results (in 5 year old terms) to taking him to the store to pick out foods.  And he seems to be okay with it.  But, he hasn't been faced with much temptation yet... 

Dr. Shaw has treated PDD with much success, and is confident that we will see a 30-50% improvement in his behavior within 30 days, if not sooner.  

Much of the findings make sense as we often see episodes of anger/frustration that were probably occurring when his blood sugar was crashing.  We are anxious to see if this new diet helps - and I think we will all feel better as we really focus on eating better foods.

We have not stopped pursuit of an "official" diagnosis because he will need it to get help in the school system.  D is scheduled for testing on May 4th.  We would so appreciate your prayers as this day approaches.

xoxo,

Chele

Reward 2 and an Update

As promised, I am here to share with you an update on our work with the child psychologist, specifically regarding the use of rewards for behavior modification.  I know, I know...it's been a long time coming.  And I have a general update on all things D-man since it's been so long!

At one of our recent visits, I spoke candidly to the psychologist about rewarding D's behavior.  She heard me through all the concerns that I had.  If you missed it, you can find it here.

Her response was encouraging.  Of course she gave me the "why" behind it and a bit into the science of it, but was absolutely willing to meet us where our parenting decisions stand.  Actually, the behavior chart helped us to narrow down the biggest issues that D was having.  So, at this time, we have shifted our focus to trying to handle D's difficulty with transitions and aggression.  This is not any easy task at home during the day with 3 little ones to care for alone.

For the most part, I have a handle on things when we are at home and he functions pretty well as he knows what to expect here.  But, it's important that he be able to function outside of this bubble.  When something comes his way that is unexpected, its meltdown city, and it leaves me feeling helpless (and feeling the weight of staring eyes when we are in public).

In talking with others, it came to my attention that D might benefit from wrap around services, which would be provided in our home and/or in the classroom.  THAT is really what he needs.  Going into a room to talk about how he feels just isn't providing the change we desire.  In fact, he often becomes frustrated, asking me "why do I have to go to all these appointments?", which tugs at my heartstrings for sure.  I am pursing all kinds of paperwork to get that going.

Occupational Therapy is going exceptionally well.  The focus of each therapy session is largely channeling his sensory issues and to a smaller extent, working on his fine motor deficits (hand strength, handwriting, visual attention, etc).  We have lots of "homework" from therapy, which keeps us busy during the day.  We are doing the Wilbarger Brushing Protocol daily in an effort to help calm him. 

And lastly, we have consulted with a clinical nutritionist, with whom I have worked with in the past.  I have heard others using this approach with children with PDD (pervasive developmental disorder, which is his medical diagnosis at this time) and have seen success.  I firmly believe that food can directly affect how good or bad we feel.  I have had my own success story working with dietary changes to reduce tinnitus in my ears. The ringing is distracting - I can hear it right now!  And it can be awful sounding like you just left a loud rock concert every night while trying to go to sleep.  When I eat the foods that can influence the inner ear, the ringing is worse and vice versa to make it better.  

The first step was to test for heavy metal toxicity.  We are awaiting the results.  And those results will help the doctor create a plan for D.  I expect to have another appointment with him in the next week or so.  As Dr. Shaw explained, we all metabolize things differently.  And D may not be able to excrete the heavy metals as well as some other kiddos.  He also felt that D was a good candidate for nutritional intervention because of his personality and the fact that his "episodes" of anger/frustration are not constant.  

That's about all the excitement happening around our abode!  Most days are busy and exhausting, but we count ourselves blessed to be together as a family.

xoxo,
Chele


*I realized that a nutritional approach is not fit for everyone, nor in line with everyone's beliefs.  Thus, I have disabled comments at the end of this post.  My heart is to just share with you what we are doing.

A lesson about nothing

This post is, in fact, about nothing. Read on :)

I was having a conversation on the phone with a dear friend. We were catching up on the happenings in each others lives, but the main purpose was to offer my prayers and support for her family as they were met with unexpected circumstances surrounding her husband's health. The night before, I prayed about the conversation that we would have - that I would be able to offer support, yet point her to the true healer. Somewhere in the middle of that conversation, it was her words that pointed me to Him.

As we were discussing a future get together, we turned to discuss the kiddos as we often do (should we bring them or not?). She said that likely she'd have her girls there. And I quickly began to plan how I could NOT have mine there.

Why?

Well, quite frankly, this is where D struggles the most - playing cooperatively and appropriately with other kids. And it honestly fills me with anxiety to even contemplate having him play with other kids. Heaven forbid if they do not want to play Star Wars....

Without hesitation, this friend lovingly responded, "I WANT your kids there, especially if I bring mine."

And those words were enough. 

Simply, I believe that we all desire to feel wanted. With those words, my feelings of anxiety were proved to be unnecessary - WE ARE WANTED.  God tells us there is no need for anxiety -

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God" (Philippians 4:6)

That is how our heavenly Father feels about us - we are wanted, we are loved.  And we are wanted no matter the circumstances surrounding us, whether it be difficult children, health issues, job difficulties, addiction, etc.

How can I be anxious about nothing?  Because of who HE is.

Psalm 139 tells us that he knows us, He knows every word before it is ever on our tongue. He knit us together in our mother's womb and we are fearfully and wonderfully made.

So, I am resting in these words today. He knows me and my son, and he wants us on our best day and our worst day (and we have lots of worst days around here). There is NOTHING that is too big or too much for God, and that he hears our requests. We just need to listen for his response...

I'm thankful for such a loving friend.  A friend who can put God's love into action with simple words of acceptance.  If I fully rest in the fact that there is nothing to worry about, fear and anxiety will not have a hold on me, keeping me from doing things. 

And I am going to bring my kids along for our next get together...May the force be with you!


xoxo,
Chele