A Rough Morning

Logan and Mom had a rough morning today. He’s nine years old now; but in many ways, we are still dealing with issues that we faced when he was a toddler. Logan is a very special and precious little boy who often does not understand what is happening or what is being asked of him. Then, there are other times when Logan knows exactly what is happening but just is not happy about it.  Logan’s Autism plus sensory issues and overall devolpmental issues have been a challenge every day of his life.  Even though he has made tremendous progress and we are very thankful, my husband and I realize that we have many miles to go on the road to helping him become as independant as possible.

This morning, Logan had a dentist appointment. I have written about taking him to the dentist before, in my post called One Brave Little Boy.  A dentist visit is a big deal for Logan because of his extreme oral sensitivity.  I was amazed at how brave and self-controlled Logan was when he had his teeth cleaned earlier this year.  He willed himself to be brave and to tolerate all of the things that really bothered him.  I was hoping for a similar experience today, but I think that Logan remembered the extraction of 2 teeth and the application of sealants that had occured at the next appointment after the awesome dental cleaning experience.  That 2nd (extraction) appoinment of 2013 was a lot tougher for Logan.  (I also wrote about this extraction appointment in the update to the post mentioned above.)  Today’s appoinment, however, the 3rd one in 2013, made the extraction appointment seem like nothing.

Logan was upbeat and in a good mood when we arrived at the dentist’s office.  However, as soon as it was time for him to get into the patient chair, Logan was not happy.  He did allow the hygienist to put on the paper bib; but after that, he was not ready to cooperate in any way.   Logan did not want to lean back in the chair, didn’t want to open his mouth, and wanted nothing to do with the tooth polisher.  His favorite hygienist (mine, too!) who has always been so good with him in the past was called in to take over.  Another hygienist had to hold his legs, and I had to hold his arms and keep his torso down.  Logan screamed quite a bit, sometimes clenched his teeth, and was terrified again.  He’d been such a brave, big guy at his last cleaning; but today, it was as if that good experience had never occurred.  Logan’s extreme oral sensitivity took over; and he was, once again, just a scared little boy who wanted the torture to stop.

I was so glad when Logan’s dental cleaning was over.  Holding him down was physically exhausting, and the whole experience is mentally and emotionally draining.  I had hoped that a “restraint team” would not be needed for dental appointments anymore after our good experience in February, but today’s experience made it clear how much just one negative experience can set Logan back.

The dentist came to look at Logan’s teeth after today’s cleaning, and Logan cried and had to be held down again.  The dentist then gave me the unwelcome news that Logan’s mouth is never going to be large enough to accomodate his full set of permanent teeth.  He is going to have to have serial (as in ‘a series of’) extractions as different permanent teeth come in.  It will essentially be orthodontia  by extraction, with the removal of some teeth making room for others to move into place.  This was not exactly the best news after seeing what a setback the recent extractions were to all of the progress Logan had made with his oral sensitivity issues relating to dental care.

The roughest part of the morning, however, had not yet occurred.  After the morning’s dental experiences (cleaning with the hygienist and “restraint team” plus inspection with the Dentist and a repeat performance), which terrified Logan and exhausted me, Logan would innocently do something else that terrified me and still has me shaken and on the verge of tears.  We had gone to the billing desk on our way out of the building after Logan was released by the Dentist.  Logan got a drink from the nearby water fountain while I talked to the billing clerk.  She  could not find a record of our payment for the extraction, even though I knew that my husband, Travis, had paid.  I tried to call Travis, but he didn’t answer.  Then, I texted him to have him call the dental office, giving him the phone number and the name of the lady in billing.  As I was texting Travis, Logan walked behind me and out to the waiting room.  There are toys and books for the children in that area, so I was glad that he would be occupied.  The billing clerk continued to check her computer to attempt to locate our payment.  She finally found it.  Our dentist office has our 5 sons who are their patients in 2 separate accounts.  This was a mistake made a long time ago, but they tell me that they cannot fix it without deleting all of the records for the boys that would be moved from one account to the other.  In this instance, the double accounts for our family caused the billing issue.  The payment for Logan’s extraction had been credited to the account that includes some of our other boys but not Logan.  Finally, the issue was settled so that we could leave.  But, where was Logan?

I walked into the waiting room, and Logan was nowhere to be found.  I asked some of the parents if they’d seen him, and then I headed outside.  I thought that he might have gone to our Suburban in the parking lot.  I was beginning to get panicky.  The building our Dentist uses is located just off a very busy multi-lane road behind a thriving business.  The side street on another side of the building is also very busy, with 5 lanes of traffic at the intersection of those 2 thoroughfares.  Logan does not understand dangers like busy streets or strangers.  Anything could happen to him.  He could be anywhere.  I pushed past the rising fear and kept calling Logan’s name as I approached our vehicle.  There was no sign of him.

I turned around to run back inside.  One sweet Mom met me halfway back to the building to ask if I’d found him yet.  When I got back inside, I was not shy at all about letting the office staff and everyone within earshot know that my little boy was missing and has Autism.  Although I had kept my voice as calm as I could and didn’t speak loudly, there was enough fear in my tone and panic in my eyes to send the office staff scrambling.  It took about 3 minutes for Logan to be found, inside the building, in a corner of the room where his cleaning had been done.

Although I am very thankful that Logan is safe, the thought of what could have happened really shook me.  It’s not as though we only have to be concerned about where Logan is when he is at the Dentist’s office, either.  No matter where we go, Logan could disappear around a corner in a matter of seconds and be in a busy parking lot or street.  He could become lost in the wooded areas between subdivisions.  We have been aware of this issue for some time now, and every close call only makes me more concerned.  Once, this past year, Logan got away from his teacher and aides at school.  They found him later on the playground.  Once, a few months ago, Logan left our yard and our cul-de-sac.  Travis found him wandering down another street in our neighborhood.  We have been talking very seriously about getting a tracking bracelet for Logan, and I am sure that we will be looking into that as soon as possible.  That could give us some peace of mind in knowing that if he were to get lost, there would be a way to locate him.  I don’t know how quickly the locating process works, but he could still be in the middle of a busy street faster than we could get to him.  I have to give my fears to the Lord, and we have to do our best to continue teaching him about dangers.  Even so, I know deep down that he can be very unaware when he is in his own little world and that he might quote a line from Buzz Lightyear if he was asked for his address.  His knowledge can only protect him if he understands why it is important, and therein lies the problem.  Even though I know that we can’t totally protect Logan from everything, I am still human enough to be emotional after an experience like this morning.

As we drove into the driveway about an hour ago, I said something very normal to Logan.  I said, “We’re home!”.  Immediately, my mind flew into emotional mode, thinking that both of us had made it home.  My eyes filled with tears… tears for a scared little boy, tears for a terrified Mom, tears for the innocence that makes him so vulnerable, tears for a close call, tears for the panicked moments of not knowing, tears for more dental trauma to come… and tears of thankfulness that we have survived thus far.  Thank you, Lord!   Our rough morning could have been much rougher.

 

Epilogue

After a few hours had passed, I had gained further perspective.  Logan was totally unaware that he was ever ‘lost’.  He knew exactly where he was the whole time.  For him, the smiles and and happy mood had returned quickly.  He mentioned several times throughout the day, “You went to the Dentist Doctor.”  (referring to himself)  He had a great feeding therapy session the same afternoon and was glad to play with his brothers when we returned home.  I’m also glad.  The hugs, the smiles, and the sweet little voice are such precious gifts.  Thank you, Lord, for Logan.  🙂

The Secret Life of a Special Needs Parent

The Secret Life of a Special Needs Parent

A revelation of grace, grief, joy, love, blessings, and challenges

For parents of special needs children, family and friends who love them, and others who want to understand.

We’re in this together.

 When it comes to the here and now and the practical issues of parenting,

there are certain facts that are true for every loving parent and child.

*  Every child is different, and their needs vary significantly throughout the constant changes of growth and development.

*  Every parent seeks to meet the needs of their child or children, no matter how challenging those needs may be.

*  Every loving parent tries to stay in tune with the heart of their child and to know and even anticipate their needs.

*  No matter what a parent experiences in caring for and loving a child, the love and the joy over-ride everything else.

*  The two most important goals of most parents are:
(1) to help their child go through all of the developmental stages in their emotional, intellectual, spiritual, and physical growth
and 
(2) to help their child learn how to become an independent and contributing adult with the skills, knowledge, wisdom, character, and faith they will need to live a life of meaning and purpose.

SAME  GOALS, WITH INDIVIDUALIZATION
For parents of children who have special needs, these basic facts and primary goals are the same.  However, the methods of achieving these objectives can be vastly different, often with much different expectations and a highly individual timetable for development that is discovered only through continued effort and the constant need to adapt to the individual child’s own pace in learning and in reaching developmental milestones.

For some children, a developmental timetable can be relatively predictable.  However, many children with special needs seem to have their own internal pace.  Developmental experts can make predictions.  Teachers and therapists and parents can set goals, but the true timetable for learning and developmental progress cannot be set externally.  It is revealed by time.  Sometimes, the developmental milestones are met more quickly than anyone expected; and sometimes progress can seem to take place, only to be followed by regression.  Sometimes, progress happens but takes a long time.  Parents of special needs children come to know the unpredictability of progress all too well.  Special needs parents also learn to re-evaluate the very concept of progress.  If, for a special and wonderfully made child, the “norms” are not the norm, your hope for progress in every area possible must still be kept alive.  For some, progress can mean the absence of regression.
The Key Truth about goals:
Even if hopes for progress and positive change must be adapted somewhat for an individual child, those sparks of hope are kept alive (and fanned into a flame of persistent faith in the un-revealed potential within) by the deep love of parents for precious little hearts and souls.

Relying on God’s strength and seeing the child within
Every situation is different, and all parents of special needs children deal with ongoing needs and challenges that require all that we are and even more than our best.  God’s strength and His promise to work everything together for our good are crucial in my own life as far as mental and emotional well-being.  However, I certainly cannot speak or write for every special needs parent or for every kind of situation.  Special needs can be physical, emotional, mental, developmental, academic, sensory, social, behavioral, functional, ambulatory, or medical.  (Note:  I am not a special needs professional, so I may be leaving something out.)   The term “special needs” can also apply to any kind of combination of various types of needs.  However, … it is not the needs alone that special needs parents want others to see.  It is the child.  Certainly, an awareness of special needs can be crucial, but recognizing the uniquely precious child within is even more so.  Each child is unique not only in their needs and challenges but in the blessing of their precious life.

Dealing with the desire to “fix” things

Part of being the parent of a special needs child is knowing (and dealing with the knowing) that you cannot give to them everything that you would like for them to have.  Sometimes there are issues of health, mobility, understanding, communication, ability, independence, a “normal life”, and even length of days.  As parents, we can’t change everything, and we can’t fix everything as our hearts long to do.  Some things are out of our control and are in God’s hands.  Even the things that seem to be within our control are in God’s hands, and that really is the best place for them to be.  So, we hope… and we never stop striving to make things the best that they can be for our children.  We trust, and keep walking with God, knowing that our lives, our hurts, our hopes, our loves, and our deepest longings are in His hands, too.  Most of all, we love.  We keep loving, knowing that love is the best gift and that love is something we have in abundance only because God first loved us when we were sick and weak and lost and blind and unable to fully live.  He is our hope and the source of love.  He made our precious children, and He will someday give to them a life that is more than we could imagine, eternally whole and fully aware of how unique and special and loved they are.  We will surrender our need to make everything alright and trust that God will make everything right someday in ways that we never could.  Our job is not to “fix” or to “make everything better” but to love.  We will accept that some things will be different for our child, but we will never give up trying to make things the best that they can be.

Key truth about acceptance and surrender:
Hoping and striving, trusting that there is a purpose for your child’s struggles, and relying on God’s promises can allow us to focus on what is truly important.  God’s love for you and your child and your love for each other will always be the most important and eternal aspects of life.  Although the journey through life with your special needs child involves a lot of unknowns and griefs, love will carry you through them.

Look at me!
I may not be able to fly as high as some, but I am trying to fly my best.
I am special. I am unique. I am beautiful!

THE MYSTERY OF THE JOURNEY

It’s as though a parent of a special needs child has begun a journey with an uncertain destination, incomplete road maps, and a set of broken tools.  The compass has no needle, so direction is unsure.  The spyglass has a broken lens, so you can’t see what’s ahead.  The GPS keeps chanting “Recalculating, recalculating…” inside your mind as you deal with an unfamiliar landscape.  Your watch has stopped working, so there is no accurate timetable or way to measure progress made against whatever progress might be possible.  Your cell phone has a low battery, so it’s difficult to communicate with your family and friends.  They are still there for you, and they also love and know your child; but it’s hard for them to invest enough time to truly know and understand what you are experiencing along the way.   Your pain comes through in spite of the dropped calls, but sometimes they don’t know what to do or say.  The rest of your immediate family is travelling with you and your special needs child, and hopefully your spouse is with you in every way as you face the journey together.  If you are a single parent, hopefully you will be able to build a support system of loving friends and family who will come alongside to help your child (or children) when needed and also be a help and support to you.

GRIEVING, HOPING, LIVING

Your other children each have their own journey, with their own issues and needs along the way.  They need you to travel with them as well, so you are simultaneously experiencing very real life journeys that are vastly different, depending upon the needs and special needs of each of your children.  In addition to all of the common struggles of growing up, your other children also face unseen hurdles and even their own griefs as they love and try to protect their special needs sibling.  There are a lot of things about having a special needs sibling that can be very difficult, but you try to teach your other children along the way that love and thankfulness are the keys to enjoying life moment by moment with their special needs sibling, while also grieving for them at times.  So, as parents, you are not only dealing with your own feelings and griefs and questions and challenges (in relation to the challenges faced by your special needs child), but you are also dealing with helping your other children to understand, cope, grieve with hope, love without condition, and handle their own feelings regarding everything related to their special needs brother or sister.

For parents, it’s incredibly hard to balance the unknown aspects of the journey with your special needs child (and each of your family members’ own struggle with the family’s journey on that road) while also experiencing the milestones and life changes of growing up with your other children.  These milestones and life changes have been revealed to the very core of your heart as something that cannot be taken for granted.  On the one hand, they are incredibly sweet since you recognize what a miracle each of them is for the child as you witness the wonders of growth and change.  On the other, you grieve inside for the fact that these same milestones and life changes are not all going to happen or are not going to happen in the same way for your special needs child.  The balancing act becomes one of grieving while rejoicing, often without revealing your heart in the moment (so that the internal struggle does not diminish the joys of very real accomplishments and life changes for the child who is moving forward).
Key Truth about living hopefully even while living with grief:
When the waves of grief wash over you, you eventually learn to immediately focus your thoughts on all of the blessings of life with your special needs child and all of the victories, from the most minute to the biggest of the big, that have happened in the life of your special needs child and in your heart as you have loved and cared for him or her.  Thankfulness is the only antidote to grieving that I know.  It is the lifeline that will pull you out of the crashing waves of grief and into the presence of Christ.

LOOKING FOR THE BLESSINGS

One of the many blessings that is a part of life with the incredible gift of your special needs child is the fact that there is a sharpened and very keen level of awareness of the need to be more fully aware in all of life.  If I am more aware of the pain and challenge and difficulty and loneliness in my life, I must also become more aware of the joys and blessings and victories and wonderful moments and graces within the tough moments.  Here are some examples of the ways that this awareness of the need to become more aware manifests itself in my life as a special needs parent.

>  In my moments of the most acute need, when I am dealing with some aspect of now or of tomorrow, I can become so aware of the fact that the challenge is mine to face that I could miss the sweetness of possessing this need.  Here is part of the fuller awareness that I need to find and to remember:

*  I have this need because of an infinitely incredible gift.

*  I have this need because of life and because of love.

*  I have this need because somehow God saw something within me that could be made beautiful with the help of a precious little soul who has become my teacher.

>  In moments when hopelessness begins to creep into my heart, I can become so aware of feeling overwhelmed that I miss the lessons of holding on to hope.  I can even miss the truth that hope is at its most powerful when the answer or solution or resolution or realization of that hope seems the most remote.

*  I have this hope, and I hold on to this hope, because I will never give up seeking to make life better and more full and loving for my child.

*  I have this hope because I know that there are people who have never given up on me, and I have seen how powerful this force of hope can be in my own experience.

*  I have this hope because all things are possible through Christ.

*  I have this hope because when desperation has caused me to lose my hold on hope, I fall into the hands of my Father, who surrounds me with His love and with the knowledge that all hope is found in Him.

*  I have this hope because life has infinite value and because I have been blessed.

REJOICING IN THE VICTORIES

>  In moments when a victory happens, I sometimes become acutely aware that there is almost no one that can really grasp the significance of this victory because so few see the entirety of the struggle.  I can become so aware of the loneliness of incomplete knowledge that I miss all of the blessings that should be my focus.  Here are some reminders of the blessings within each victory.

*  This victory has happened because of the will and the spirit of a little trooper who keeps on trying and is often so blissfully unaware of the fact that this moment was long in coming that nothing dims his joy.

*  I can rejoice in this victory because it means that all of the investment of time and love and care and therapy and intervention (which was valuable in itself, even without and before tangible results) has produced a positive change that has made life better in some way for my much-loved child… which, in turn, gives hope and motivation to keep going!

*  I can rejoice in this victory because it is a reminder that even though I may feel alone sometimes and even though there is no one (other than Travis and I) who has seen all of the parts of the story of our Logan from the beginning until now, I meditate on the fact that we have not been alone.  We (my husband, my family, and I) have had each other, and we have had the presence of God with us every step of the way, even in the hardest moments that no one else has ever seen.  I can also recall and rejoice in the fact that there are so many wonderful people who have loved our Logan (and still do) and who have been a part of his journey and ours in very significant ways, helping both him and us to reach the vantage point from which we can look back and see all that has taken place.  The feeling of loneliness and of recognition that few can fully grasp a victory is replaced with thankfulness for family and friends and teachers and therapists and specialists and doctors and volunteers in support organizations and respite volunteers and Sunday School teachers and workers, and child care givers, and special family friends who have cared for Logan, and Choir and Missions and Vacation Bible School teachers and helpers at church, and people who volunteer to serve as a “shadow” for Logan and focus on his needs, and every kind stranger who has ever spoken a word of encouragement.

PERSPECTIVE ON THE ROLLER COASTER

It’s really difficult to explain this crazy roller coaster of parenting a special needs child.  There are moments of sheer terror or panic and moments of thrills and laughter.  There are many times when my heart and my life feels so full of love, and there are also many times when the uncertainty, the questions, and the challenges threaten to attack my peace and steal my joy.  There’s so much more involved in the experience than could possibly be contained in this article.  While it can be exhausting to experience the intensity of so many emotional highs and lows involved in the blessing of parenting all of our children (and particularly our son who has special needs), there is also a strength that is born out the the knowledge that for every awareness of difficulty and acknowledgement of pain, there are blessings and joys that come to light with the re-focus.

THE KEY:  It is this secondary focus on the awareness of the flip side (to every difficulty) that reveals burdens shared and lifted, victories gained, spiritual lessons, simple joys, and love… always love. 

And many, many times, that side (the blessing side, which we see by faith and also because it is very real) is what we’ve learned to see first.  We choose to see the positives.  There are a lot of blessings!  There is a lot of joy!

 

Loving our special needs child has made us better people because he has helped us to see all of the joys and blessings that could have been overlooked.

Logan’s most recent school picture

Many things are the same for us and for other special needs parents as for any parent and child.  Highs and lows are experienced in every family.  Challenges and heartbreaks come.  Victories and heart-warming moments come, too.  There are moments of recognition and realization that are so significant and memorable that they become part of the story of every parent and child.  Moments of realization with other children might be about discovering an ability or talent that can be nurtured.  A moment of realization with Logan might be a flash of recognition that we have been praying the same prayer (that this would be the year, the month, the day when he would finally learn to chew and be able to eat real food) for six years now.  A moment of victory with another child might be all A’s on a report card.  With Logan, a recent moment of victory took place when Logan finally did something that most children do as a pre-schooler.  Last year, there was a day when Logan took a paper out of his backpack when he got home from school and showed it to me.  It was the first time he’d ever done that (at age 7 rather than at 2 or 3.  A couple of weeks ago, Logan again brought me a paper; but this time, he spoke to me about it. It was the first time he’s ever brought me a paper and told me about it…at age 8 (almost 9).  He brought me this paper (I scanned it so that you could see it here), and he said, “Look, Mama!  It’s Logan’s beautiful heart!”  I could not have said it better myself.

“Logan’s Beautiful Heart”
It’s purple construction paper with a heart-shaped cut-out. A dyed coffee filter is glued to the back of the construction paper so that it shows through the heart shape.

We certainly cannot deny the fact that our Logan is a child who has special needs.  More importantly, though, Logan a little boy.  He loves to have fun and be silly.  He loves to run and play.  He may not be able to experience everything in the same way as his brothers, but he experiences everything with his whole heart.  When he’s happy, he is whole-heartedly happy.  He makes others happy, too!  Logan does have a beautiful heart.

A beautiful life may be different from the lives of others, but it is still beautiful.

I believe that every loving, special needs parent, like us, experiences

a process of learning to  SEE   beyond …..

the needs,

the challenges,

the diagnosis,

and the uncertainty of the future

to the most important thing…

the precious and wonderful gift of their child.

There will always be many questions about tomorrow.

*  There are questions about how much progress Logan is going to be able to make.

*  There are questions about how independent he is going to be able to become.

*  There are questions about who will care for him when my husband and I no longer can.

In addition to those concerns about the future, there are many needs right here and now.  With our five other boys and all of their needs, it is hard to find enough time to do all that we need to do for Logan.  He is getting special therapy for his eating issues twice a week, but he also needs a lot of one on one time (as do all of our boys).  He needs us to read to and with him, to do math flash cards with him, to play board games with him, and to teach him to do household tasks.  There is so much that can be done and so much that will need to be done in and for his future.  However, we can’t let ourselves get so caught up in all of the tasks and all of the unknowns that we miss just simply loving and relating to Logan right now.  We need to enjoy him, and there is much to enjoy.  From his affectionate nature to his quirky sense of humor, to his fun personality and all of the things that he is learning, Logan is an awesome little boy.  Developmental targets and statistics and academic goals and plans for the future are all very important, but Logan’s beautiful heart and soul are the most important.

So, while we don’t want to sugarcoat a life that has major challenges and many heartaches that no one else sees, we choose to look for the blessings.

While it’s true that we are always aware of our own human emotion and human reactions to life’s challenges, we are on a journey toward having a sharpening of vision.  We are learning to see the flip side of tough realities.  Our spiritual eyesight is responding to the lessons of the heart and soul and learning to see blessings first.

When we look at our Logan, we do see infinite blessings.  We know that many, many others see the blessing of Logan, too, and that’s really what we want as parents.

We want to know that when you look at our child, you see a little heart and soul that is a blessing of uncalculable and infinite worth.

–This post was written by Cynthia Boyd

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NOTE:  Even though this post is fairly long, it still feels as though I have published it in an incomplete state.  There is so much more to write and so much more to learn and experience.  There is so much in my heart, and I haven’t been able to put it all into words yet.  I can see the value in sharing the words that are already here, even though there is more to come and much more to understand.  So, here are the thoughts that have made their way into this revelation of life.  I hope they bring understanding and help someone.  If this post touches your heart, please share it with others, using this link:  https://familysong.wordpress.com/2013/03/07/the-secret-life-of-a-special-needs-parent/

For more on the story of our personal journey, read this post:  https://familysong.wordpress.com/2013/01/19/one-brave-little-boy/

Or, read some of the other posts in our  “Special needs, Special blessings”  category at:  https://familysong.wordpress.com/category/special-needs-special-blessings/

 

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Note:  I love this little sign.  The figure is not stopped by the obstacle, he jumps right over it.  Parents of special needs children, this is you!  You are an overcomer of obstacles, a stubborn warrior who will not give up, and a tidal wave of love that cannot be stopped.  Sometimes, this is my sign, too.  And, sometimes, I need a sign that is a little bit different.  Sometimes I need the sign that shows the little figure being lifted over the obstacle or carried through the storm by the strong hand of Father God, and sometimes I need the sign that shows the little figure and his family camped out in front of the obstacle, working and hoping and praying for victory.  If you pan back a little farther on my camp out sign, you will see that the ground on which our campsite stands is not really earth.  It is the hands of God, where He is holding us as we wait and work and believe that this obstacle will be conquered.  If you don’t have a personal relationship with God through Jesus Christ, I can assure you that nothing else would help you more with all of the challenges of life, and nothing else will make you more aware of your blessings and give you more hope for eternity.  If you have questions about life and eternity and God and purpose, please go to our page called, “Do You Know Jesus” at this link:

http://www.familysong.wordpress.com/do-you-know-jesus/

There, you will find links to many web pages that have been designed specifically to answer any question that you might have.  Some of these pages even have the capability to be translated into multiple languages.  Let us know if you find the anwers you are seeking.  We are praying for you!

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Here’s a music video with some precious photos of special needs children and Moms and Dad. It will bless you!

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Note:  Here’s a link to an article for parents whose child has been diagnosed with ASD (Austism Spectrum Disorder).

http://thestir.cafemom.com/toddler/135651/10_steps_to_take_if?utm_medium=sm&utm_source=facebook&utm_content=autism_fanpage

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One Brave Little Boy

I took Logan to the Dentist last week.  It was a rather odd morning, but it was full of grace and the astounding bravery of one very special little boy.  Before I tell about Logan’s recent Dentist visit, I must tell some of his story.  It is only with an understanding of how far Logan has come that the full extent of his little boy effort and bravery can be appreciated.

Taking Logan to the Dentist has always been an event that required great exertion, both physically and emotionally.  Logan has special needs.  He has Autism.  For a long time, language eluded him.  What was abundantly clear, even before he could verbalize his preferences, was that Logan had major issues with anything touching his face, especially around the mouth area, and that he would not bite or chew.

Logan had come to live with us at age 2, as a little lost soul.  He was a prisoner of his own lonely world, captive to the disconnect that we call Autism.   We went to work on connecting with Logan through love, through music, through therapy, through observing what he liked and reponded to and then using those things to reach out, through security and routine, and through prayer.  Many others have come alongside our family to love and help Logan.  Therapists and Teachers, Developmental Specialists, people at church, friends who cared, family, and other school and pre-school personnel have all had a part in Logan’s journey.  Oh, how he has been loved!

Little Logan in a happy moment during one of our heart to heart connection sessions

When Logan was two and three and four, we had a routine.  After feeding him, I spent time with him one on one.  He was still strapped into his little booster seat, and my chair was facing his chair.  We were face to face and heart to heart.  Logan had shown us that he loved music with his little sing-song babbles, so music became our tool.  I tried all of the action songs that I knew, moving Logan’s hands and arms for the motions.   I sang other little songs and made up motions to go with them.  Logan could not find the entrance to his little world with me right in front of him, singing to him and moving his arms.  He began to make eye contact and to engage.  Some of his favorites were “The Little Shoemaker”, “Deep and Wide,” “Eensy Weensy Spider,” “The Wonder Pets” theme song, and “Head, Shoulders, Knees, and Toes.”  Logan liked the part where I would touch his the top of his head, his shoulders, his knees and his toes.  When I got to the part about the “Eyes, Ears, Mouth and Nose” it was a different story, though.  He still liked the music, but he did not want me to touch his face.   He would duck his little head down as far as he could into his chest.  He would turn his body sideways, squirming away from the unwelcome face contact.  He finally got to the point where he would tolerate the touching of his eyes (just below or above) and ears during the song, but the nose and mouth were still off limits.

Logan’s extreme oral sensitivity not only meant that anything close to his mouth was a no-touching zone.  It meant that chewing and biting were out of the question for several years (though he is now doing this some in feeding therapy, tolerating more texture in his food than ever before, and we are working on it).  It also meant that brushing Logan’s teeth was an aerobic exercise for Mom and Dad.  For a very long time, it took both of us and every ounce of our strength to brush his teeth.  I would sit on a low bench in the little guys’ bedroom (shared by Logan and his younger twin brothers), and I would have him standing in  front of me, with his back to me.  I would cross my legs over his to keep his legs still and cross my arms over his chest, grasping both of his arms, to keep them still.  Travis’ job was to attempt to hold his head still and brush his teeth.  It was like wrestling an octopus.  An arm or leg or both would wriggle free and flail wildly during the process.  Added to the physical challenge of keeping him still was the fact that his jaw was clamped tightly shut, his lips were pressed together, and his head was in constant motion.  We did the best we could, and one of us always held him for a while after brushing teeth until he calmed down and our heart rate got back to normal.  Whew!   The torture was over!

Brushing Logan’s teeth used to be a tough challenge, but it was nothing compared to the challenge of taking him to the Dentist.   Travis and I used to plan to both be there and to make sure that our other children were either in school or pre-school or being cared for elsewhere.   We had to devote all of our energies to Logan and to trying to assist the dental staff to make sure that a cleaning could happen.  When Logan’s name was called, we would both go back with him.  One time, Travis sat on the chair with Logan in his lap, holding him to keep him from jumping down and running away.  I kept Logan’s legs still while Travis kept his body on the chair.  At other visits, we were on either side of Logan attempting to hold him down.  Usually, it took the two of us and three people from the Dentist’s office.  One staffer held Logan’s arms, while another kept his head in her grasp to try to not only keep it still but also to keep it turned in the direction necessary for the work that was being done.  The third staffer, the hygienist, tried to clean his teeth.  Logan would be screaming, hysterical, angry, upset, crying, and snotty.  But, mostly, he was a scared little boy totally out of his comfort zone, in a scary and unfamiliar place with people he didn’t know, and battling with both his Autism and the extreme oral sensitivity that caused the dental experience to be for him the equivalent of horrific torture.  I must stress that the staffers at our pediatric dentist were wonderful, patient, and kind in dealing with Logan, but this is still how it was for a long time.

Logan feeding himself in 2010

Logan has had a lot of therapy over the years to address many developmental needs.  During speech and occupational therapy, the oral sensitivity issues were addressed to some degree, gradually overcoming some of his fear and increasing his tolerance for things touching his face and mouth.  It has been a slow process, but progress has been made.  This Fall, we have been able to begin working with a therapist who is helping Logan to overcome his fear and sensitivity issues related to eating.  We have already seen some progress, but this process is going to take a while.  Travis and I have been gradually increasing the texture in Logan’s food for several years.  It becomes clear very quickly when we need to back off and have pushed him too far.  At that point, he stops eating altogether.  We are careful to continue pushing him but not too far so that he can maintain a healthy diet and continue to grow.  At age 8, Logan is tolerating quite a bit of texture now, but he still does not bite or chew his food.  He just swallows.  He learned to drink from a straw about a month ago.  His oral sensitivity always prevented him from wanting a straw anywhere near his mouth, but years of therapy and the addition of the feeding therapy have finally allowed him to overcome this hurdle.  He took a couple of bites of a cracker a few weeks ago in therapy, but it freaked him out so much that his therapist has had to back off on trying to get him to bite for a while and focus on changing up some other things instead.  We are more than hopeful that Logan will be biting and chewing sometime during this year.  We are counting on it!  After all, we have seen progress in several areas.  Logan now lets us brush his teeth and does his best to cooperate.  It is still hard for him.  It’s hard for him to open his mouth wide enough for us to brush, hard to keep it open, really hard to tolerate the brush going past the teeth in front to the deeper parts of his mouth, and difficult for him to remember to keep his tongue out of the way.  However, he is not fighting it or screaming.  He is trying, and that effort is happening in spite of the fact that he still hates it.

At the Dentist’s office, there have been improvements in Logan’s tolerance as well.  The last couple of times Logan had an appointment, I’ve been able to take him by myself.  It has not been necessary for my husband to be there as well.  Instead of 3 staffers helping in order to get his teeth cleaned, we have been able to have only one other than the hygienist (to hold Logan’s head and turn it the right way).  I’ve still had to hold Logan’s hands and keep him on the chair, but he has not been as wild and crazy as he used to be.  One of the times when he had his teeth cleaned, he had a message for the hygienist after she was finished.  He pointed at her and said, “You bad!”  Other times, he would just be screaming by the end of the cleaning.  Once, the Dentist came to check his teeth after the cleaning was finished and gave him a talking to about the screaming.  That seemed to make an impression on him.  Having the dentist talk to Logan like a big boy + all of the therapy he’s had + the patience of the dental staffers during multiple visits over the last few years + Logan’s ability to communicate more effectively that he used to + a little more maturity and life experience + perhaps a gradual recognition on Logan’s part that a visit to the Dentist was survivable = a real breakthrough!

So, last Thursday morning, I took Logan to the dentist.  I signed him in and sat down in the waiting room.  A few minutes later, I was called to the appointment desk and asked what Logan was supposed to have done.  My husband had actually made this appoinment, so I said that I assumed it was for a cleaning.  The office staff told me they could not find an appointment for him on the schedule, so I said that perhaps it was because Logan’s permanent teeth had come in behind his baby teeth on the bottom and the Dentist may have wanted to re-evaluate the two rows of teeth.  Meanwhile, two ladies were searching and scanning all of the appointments on their computers and still not finding anything.  One of them said that they could go ahead and get the Dentist to look at Logan’s teeth again since we were there and that they would work him in.  I sat down in the waiting room, confused about the whole thing.  I knew that my husband would not have a non-existant appointment on his calendar, so the whole thing did not make sense.   I decided to try to make the most of the fact that I’d taken Logan out of school for this phantom appointment, so I went back to the desk and asked whether there was any way that Logan could be worked in to the schedule for a cleaning since we were there.  Again, two ladies scanned and checked their computers; and I was told that Logan would be able to get his teeth cleaned.  Victory!   Then, the office staff told me that Logan’s cleaning appointment was really supposed to be in February, with two of his brothers.  We usually try to schedule all 5 of our younger boys within a week (our oldest son goes to a different Dentist), so I asked about the other two boys and then found out that the office still did not have all 5 of our boys listed together as belonging to the same family.  Three of them were in one group, and our twins were in another.  This computer problem was fixed, and appointments for the twins were added to the February date.  About this time, Logan’s name was called, so I accompanied him back to the area where cleanings are done, still wondering why his appointment for that day was not showing up on the office computers.

A recent photo of Logan

From the beginning of that day, even though I had office mix-ups to handle, Logan was a little gentleman.  That morning, he was excited about going to the Dentist!  Wonder of wonders!  We used to avoid telling him.  Then, as soon as we pulled into the parking lot at the Dentist’s office, he would start saying, “No!  No!”; but on this morning, he went willingly and happily.  He played while while we were waiting and shared with a younger child who was there.  When his name was called, I didn’t have to carry him or drag him to the chair.  He walked back on his own, climbed up in the chair by himself, and did everything he was told to do (scoot up on the chair, wear sunglasses provided by the office to block the glare from the light, lean forward to have the cord for the ‘bib’ fastened around his neck, etc.).  The hygienist who worked with him and cleaned his teeth is so wonderful.  I would even go so far as to say that it is impossible that anyone could have done a better job with him than she did that morning.  She talked to him so sweetly, and he really responded well.  He was communicating with her, answering her questions (“Do you want some water?”, “Can you turn your head for me?”), and he was even telling her when he was not ready or was uncomfortable.  Having help from another staffer was not even necessary.  It was just the hygienist, Logan, and me.  I did hold Logan’s hands to keep him from reaching up to grab for a tool or the hygienist’s hands if something bothered him, but I did not have to hold him down on the chair for most of the cleaning.  He was actually relaxed and trusting.  It was like witnessing a miracle.  The oral sensitivity issues were not gone by any means, but he was choosing to conquer them by willing himself to be still and to cooperate.  He was such a brave little man!   When he was not quite ready for something, he would say, “No, thank you.”  in a very civil tone of voice.  He would reach his tolerance level for opening wide and saying “Ah”, and then he would have a suggestion for the hygienist.  “Say ‘eee'”, he would tell her.  (That’s what we have him say when we are trying to brush his front teeth.)   She would comply and work on the front teeth for a little while and then get him to open wide once more.  He was so incredibly good through the entire cleaning.  He even tolerated and allowed the flossing with no protest.  He did look panicky when the hygienist held up the long string of floss; but after she explained that she was using it to clean in between his teeth, Logan allowed the flossing even though it was clearly very uncomfortable for him.  Finally, the hygienist was ready for the polishing paste on the rotating rubber cup that serves as the tooth polisher.  That freaked Logan out.  The combination of an unfamiliar taste and too much stuff in his mouth was gagging him, and I did have to hold his torso down for a few minutes to keep him from trying to sit up or get out of the chair.  He was not screaming, but he was making some noises of discomfort (ugh, ahrg, ah).  The rinsing and the clearing by “Mr. Thirsty” (the vacuum tube, which Logan was able to use properly when I told him to ‘kiss’ it and got a proper pucker) did help some, and the whole procedure was finally finished.  Logan was quite ready to get down, but I did get him to say, “Thank you.”  This was the best he had ever done for a Dentist appointment!  However, our dental experience was not yet complete.

Just as Logan was getting out of the chair, another staffer from the Dentist’s office came to tell me that they had finally located Logan’s appointment and that what he had been supposed to have was an extraction.  I was totally shocked at this news.  At Logan’s last visit, the Dentist had decided to wait on extracting any of the teeth in Logan’s two bottom rows (where the permanent teeth were coming in behind the baby ones).  She was hopeful that the baby teeth would come out on their own and an extraction would not be needed.  However, she did say that she wanted to see him again and would extract teeth later if necessary.  I think that what happened was that a follow-up visit to re-evaluate the extra row of teeth was scheduled; and the Dentist later may have requested that her staff schedule extra time for an extraction on that day, just in case she decided to remove any teeth during the appointment.  We were never told that an extraction time had been set up.  Hence, the mix-up about not knowing what type of appointment to have the office staff locate on their schedule.  At this point, I was not sure that Logan was going to tolerate any more oral intrusion after what he’d just been through with the gagging and discomfort during the application of the polishing paste; but the Dentist was ready to re-evaluate his teeth and perhaps do an extraction.  However, first she wanted an X-ray.

Off we went to an X-ray room.  Logan was kind of quiet, but he walked into the room and willingly climbed up into the chair.  He didn’t protest when the lead apron was placed over him.  Then, the X-ray technician was ready for him to place the camera into his mouth.  The camera housing was a pill-box sized brown plastic rectangle, about 3/4 inch thick, with a long cord dangling from it.  Without knowing Logan’s oral sensitivity issues or about the fact that he didn’t bite or chew and has a strong aversion to the cookies and crackers that people have always tried to get him to eat, the X-ray Technician said something that I just knew would have Logan running for the hills.  She said, “You just have to bite down on it like you are biting a cookie.”  The young woman had no idea that she was saying this to a little boy who never bit and chewed on toys or teethers, never chewed his food, and who was in special feeding therapy to overcome this very issue.  She had no way of knowing that only a month before, Logan had a 10 minute long meltdown at his therapy just because his therapist had brought a cracker into the room.  She wasn’t aware that Logan had successfully taken a tiny bite at two therapy sessions in a row, only to then become so freaked out about biting that his therapist had been forced to back off on trying to repeat it (still his current status).  I waited for Logan to cry or jump out of the chair, but he just sat there.  I didn’t say anything to the X-ray Tech at that point because it takes too long to explain and because I wanted to give Logan a chance to be my big, brave boy once more.  He did not disappoint.  Bless his little heart.  The Technician told him to open wide, and he did.  She told him to bite down on the plastic camera housing, and he did.  However, he was unable to hold the thing in his mouth long enough; and she missed her opportunity for an X-ray on the first try.  At that point, I said, “He has extreme oral sensitivity and normally doesn’t bite or chew.  We can try again, but it’s going to have to be quick.”  She got her cord in hand with the go button and repeated the insertion of the camera housing.  Once again, Logan was a trooper.  He opened wide and bit down.  She was quick and got the X-ray on attempt #2.  I didn’t even leave the room or have protective radiation blocking.  Sometimes a Mom just has to do what a Mom has to do.  If Logan was going to do this incredibly brave thing…twice!…I was going to be right there with him.  The X-ray Tech checked to make sure that the picture was a keeper, and then we were ushered off to another room to await the Dentist.

Again, Logan walked willingly and got up into the chair willingly.  We didn’t have to wait long for the Dentist.  In the meantime, Logan was distracted for a few minutes by the wall-mounted television in the room, playing part of the “Bug’s Life” movie, which is one of his favorites.  However, when the Dentist came in to look at his teeth, Logan had reached his limit.  He would not cooperate with her at all as far as turning his head the way she needed and opening his mouth.  A staffer had to help, and I was on duty holding Logan’s arms again.   The Dentist turned to me and explained that she was going to extract two of his baby teeth, which would allow the permanent teeth to begin moving forward and then hopefully crowd out the remaining baby teeth.  However, because Logan had reached his limit and was not cooperative, she would not be doing the extraction on that day.  She was going to need to have him anesthetized, with both medication and laughing gas.  We would have to come back on another day, and he would have to be out of school for the whole day.  The extractions would be really quick, but the effects of the anesthesia would take up to 7 hours to wear off.  We will go back next week for this procedure.  Once again, both Dad and Mom will be there.  Hopefully, we can get this done without too much trauma.

As I drove Logan to school after his appointment, I reflected on the way that events had transpired and marvelled at the progress that Logan has made and at his extraordinary effort and bravery on that day.  I am thankful that the computer issues happened that morning.  We were able to get Logan’s cleaning out of the way, and he was able to have the most positive dental experience that he has ever had.  Hopefully, he will remember the good and not be able to remember the extraction.  If he had gone directly in to see the Dentist in the cooperative mood he exhiblited for so long on that day, the Dentist might have tried the extraction without anesthesia (with nitrous oxide and numbing injections only); and the procedure could have been very traumatic for him.  I was so glad that the appointment turned out as it did and that after the extraction, Logan will not have to go back to the Dentist for a while since his cleaning is already done.  Again, I marveled at Logan’s good humor and his bravery.  He tried so hard to be good and to be brave, to do what was asked of him, and to conquer his fears and discomfort for a very long time that morning.  I didn’t think I would have done as well under those circumstances.

I drove a happy little Logan to school.  He was ready to resume his routine, and the Aide from his Moderate Autism 3rd grade class greeted him with a joyful hug.  I explained that he’d just come from the Dentist and had not yet had his lunch.  Our appointment had stretched to almost two hours, and Logan had missed having lunch with his peers.  We send Logan’s lunch to school in his backpack since he has a special diet.  I was glad that I had included a cold pack in Logan’s big food baggie that morning since the appointment had been longer than expected.  The Aide assured me that he could eat in the classroom and that all would be well.  How thankful I am for people like her and for the wonderful Hygienist who was so good and patient.  How thankful I am for unexplainable circumstances and graces like phantom appointments and for the precious gift of a very brave little boy!

Update:  Logan’s tooth extraction is over, and he is doing just fine!  My husband, Travis, and I were both there for the procedure, and it took both of us helping (with Travis holding Logan’s legs and me holding the arms) plus the Dentist and 2 assistants to get everything done.  One of the assistants was handing things to the Dentist, and the other one had to use a special tool to keep Logan’s mouth open.  Logan did have anesthesia and laughing gas.  He did very well keeping the mask on his face, but he did not like the numbing of his gums, the process of having sealants put on his back molars, or the extraction.  We did have to work together to hold him still and get it done, but hopefully the anesthesia will prevent him from remembering  it very well.  Logan couldn’t stand up after the procedure, so I was glad that Travis was there to carry him to the car and into the house.  One of the hardest things that day was not being able to let Logan eat breakfast, but he was pretty good about it.  He got his oatmeal with yogurt (his usual breakfast) after he’d been home for a while and was awake enough to eat.  He rested on the couch and watched TV for a couple of hours, and he was fully alert by the time his brothers got home from school.  After that, you wouldn’t have known anything took place.  He’s been a happy camper ever since.  🙂

Update on Logan’s feeding therapy, June, 2013:

Logan is making some really good progress in his feeding therapy. His therapist says it’s unusual because most of her feeding therapy patients have responded best to learning to bite with something crunchy. Not Logan, though. That terrifies him. So, she’s been using Twizzlers with him instead. He was biting the twizzlers that look like a thick straw with ridges first, and he would bite on the end …until it was practically mush but kind of panic if a little piece came off in his mouth. Now, she has him biting on the softer twizzlers that are like strands of the licorice (strawberry or cherry flavored), swirled into a rope-like piece. He has been biting off pieces (about a half inch long), and then he’ll take them out of his mouth and put them on a napkin. At the end of a session, he would have a napkin full of the bite-size pieces. Yesterday, he tried something new and did it throughout the session. He would take the small pieces and bite them in two again (progress toward consecutive biting/chewing). Another great thing is that he began experimenting on his own with doing the biting in different areas of his mouth. Also, his therapist says that the fear element is diminishing significantly. The best part is that he didn’t panic if a small piece came off. He’d just move it around in his mouth with his tongue and then swallow. His therapist has learned how much Logan loves balloons, and now he gets one every time he has a good session (makes progress, does what is asked). That has really worked as a motivator, and he’s gotten a balloon every time since she began using them.  🙂

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Our Very Special Logan

THIS is the face of a special needs child.  Many people have tender hearts for special needs children and care deeply about the infinite blessing and value of their lives.  The caring and compassion of others is a blessing to me and to our family as a whole.  Logan senses immediately when someone really cares about him.

As someone who is acutely aware every day of the ‘differences’ and needs that make our Logan special,  I am also constantly reminded of the fact that at the core of his being, he is just a little boy who happens to deal with some challenges. Logan loves chocolate pudding, giggles, Buzz Lightyear, hugs, and music.  He eats but does not chew.  He still wears pull-ups at age 6.  He loves running and jumping, swinging and sliding, and riding toys.  He is totally at home on the beach but never plays in the sand.  He spends all of his time in the water, loving it and laughing when a wave smacks him in the face.

Logan is sometimes patient and tolerant and sometimes very much the opposite. For example, when the photographer moved him 3 times during the set-up for our family photo shoot, Logan began to lose his good humor. He probably was thinking, “Why can’t this guy figure out where to put me?”  Like other children his age, Logan had no inkling of how difficult it must be to pose a family of 8 with such a broad age range; but unlike other children, his reaction is 10 to the 15th power. At restaurants or other public places, Logan is often the perfect little gentleman.  At other times, he can be upset and loud. In this, he is not unlike other children his age, but his reactions are more extreme. When other people give our family “the look” in such a circumstance, I am sometimes tempted to tell them that Logan has special needs.  Not once during an outburst has anyone come up to us with the boldness and grace to ask, “How can I help you?”  On one occasion, the answer would have been as simple as going to find a restaurant employee to have them obtain the spoon that Logan needed to eat his food, but I am sure that many people are very hesitant to approach for fear of seeming intrusive.

 

Because I understand the hesitancy to intervene and because I don’t want to make assumptions about others, I have never looked at another patron and told them about Logan’s special needs.  There are two main reasons why I hesitate to publicly announce that Logan has autism, although I would have no problem answering any question posed in public. One reason that I don’t volunteer information about Logan is that I don’t want to make someone else feel badly. Their natural assumption that Logan is just a bratty kid does not mean that they are not kind-hearted people. Who knows what they are going through? Maybe this dinner out was to be an oasis of calm and a brief escape from the bedside of a loved one.

The second reason that I never want to verbally excuse his behavior by blaming his challenges is that to do so might imply that the fact that Logan has special needs makes him somehow LESS (less intelligent, less controllable, less patient, less valuable, less human, less capable of learning or of love, expression, or giftedness, somehow less than his same-age peers).  In truth, I have learned so much from loving Logan, and I know that he is in reality somehow MORE (more loving, more enthusiastic, more focused on what is truly important..like a half hour rocking with Mom…)

Logan as Buzz Lightyear

Logan is like a little mirror.  I see in him what I need more of and what I need to let go; what I need to work on, and what I need to just accept or allow myself to enjoy.  He is a priceless treasure.  I have learned to look beyond the seaweed and sand of issues and behaviors into his sea blue eyes, to the infinite value of his heart and soul.

I am still learning from my precious little teacher.  Yes, Logan has some special needs.  So do I.  I need to be more loving, more patient, more focused on what is true and just and lovely.  I need to keep learning to look beyond, to see the limitless value of each human life.

Logan is more than a clinical diagnosis.  He is a little boy.  He is my little sweetheart, and he is someone.  He is loved and valued deeply by his family and friends and by his Creator.  Yes, Logan is VERY SPECIAL!

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UPDATE:  Since the facebook note that became the post above was written, there have been a lot of changes.  Logan is now 8 years old.  We left pull-ups behind long ago, and he has no problem voicing his need to go to the restroom.  Logan is doing very well in his Moderate Autism 3rd grade class.  He reads well, is doing double digit additiona and subtraction with re-grouping (borrowing or carrying), can count money and tell time, and he’s becoming more and more conversational in his speech.  Logan just started a new therapy program to overcome his extreme oral sensitivity so that he can begin to chew and eat normally, and we are excited about this opportunity for major progress.  Logan is a blessing!