A Tribute to the Power of One

Dear Mary (Our Early Intervention Specialist),

You had been teaching for many, many years when Caleb and I arrived at the door
of your classroom. To you, this was the beginning of another day like many that
had passed before. To me, it was an embarking on a new and unknown path. Our
home therapy had been discontinued, and this morning we were to begin out-patient
early intervention services. We had received the letter in the mail telling us the day
to arrive, the classroom number and your name. I had envisioned what we would
experience but was not prepared for what I was about to learn.

The moment the door opened, your smile and personality welcomed us as a
grandmother would welcome her family. You instantly put me at ease as I rolled
Caleb and his ventilator through the door. You took the lead to show us around the
room and allowed us to choose an activity that Caleb would enjoy. Your approach
that entire first day was about making Caleb feel comfortable and about finding out
what my needs/concerns were as his mother.

Over the next two years your classroom became a place of support for me. On days
when I was so sorrowful about our situation, you dried my tears and provided a hug.
On days when I was frustrated with lack of services, you helped me to brainstorm
about other ways we could get Caleb's needs met. And on days when I was so proud
of an accomplishment, you celebrated with me. You were so present that on each
day of class you were able to provide not only therapy, but also the support and
encouragement I needed in order to make it through another week.

Because Caleb was my first, I not only needed help with teaching him his therapy
exercises, I also needed someone to guide me in my parenting. You gave gentle and
wise advice on everything from potty training, to eating struggles, to discipline. You
instilled confidence in me by your simple methods of explaining things and by your
trust in my abilities. You truly made me feel as though I could succeed in meeting Caleb's needs.

In your classroom there were several other students also receiving services. Over the
months it became obvious that some parents were better at following through on home
exercises and parenting tips than other families, but never did you show annoyance
nor speak ill of any of the families you were serving. Even on weeks when we were
not able to complete the home exercises and there was no progress, you were happy
to see us and encouraged us to pick up where we had left off and continue working
toward our goals. You encouraged us with each small step along the way, pointing
out that, yes, Caleb was getting stronger and moving in the direction that we wanted.
You felt comfortable with the rate of his growth and in turn, you gave me permission
to be okay with his slow, slow progress.

 You carried with you a humble, yet informed spirit. As our time in your class came to a close, you had us connected with all of the services we would need to continue along the journey of Caleb's development.

Caleb has had many teachers over the years that have lived out all of these qualities,
but perhaps because I was so young or because Caleb was my first or because I was
present in the classroom for each session, your impact on me was the most profound.

_______________________________

Mary passed away a few years after we left her class. At her funeral were hundreds
of parents whose lives she had touched throughout the years. I don't know how many
of them were able to share with Mary the impact she had on their lives. So, to all of
the Marys out there, thank you for the job you do. You may never be told, but you are
touching lives for eternity. Not only have I been a better parent to Caleb because of
what I learned in Mary's class, but I have also been a better parent to all of my other
children. And what my children learn from me, they will pass on to their children and
their children’s children. And so please, never underestimate the power that you have
to make a difference in this world. You are not just teaching a class, you are making
the world a better place for generations to come through your impact on one family at
a time.

A Letter of Encouragement

My Dearest Friend,

As you sit at home, alone, or surrounded by nurses and therapists, I realize how lonely you are.  No matter how many people step in to help, the ultimate care of your little one remains yours and yours alone.  The professionals can and will eventually leave and move on with their lives.  There is no moving on for you.  You have now begun this journey on a very lonely path.

I understand how frustrated you become at times, not only with the situation but also with your child.  You are not able to place your child in her crib and walk away when she has been crying for hours on end, because your little one needs constant supervision in order to keep her alive.  You are also not able to call your neighbor and ask that she stop in to give you a break when you feel you have had all you can take, as she is untrained to meet the medical needs of your child. 

I know the worry that you carry regarding your child's health and emotional issues. When the rest of the family is asleep and your little one has finally begun to rest, how you lie awake worrying about insurance coverage and bills and surgeries and not only what next year will bring, but how you will make it through tomorrow.

I have experienced the moments of crying out to God without having the words to express my pain and sorrow.  

I recognize the guilt that you have for feeling all of the above emotions.  This is not how you envisioned motherhood.  This was nowhere in the plan you laid out for your life. 

I also acknowledge your deep love and commitment for your child.  I know you are willing to give up personal comfort, wealth, your own career and your personal plans, in order to provide your child with all she needs.

I notice that you scour the internet looking for answers and a cure.  I have observed you on Facebook and blogs in hopes of finding some relief for your inner turmoil.  I recognize that you reach out to friends and share your hurt, frustration and loneliness. And I also realize that no matter what you do, at the end of the day you come back to the starting point of needing to walk a path that you never imagined or dreamed of walking.

The first two years of Caleb's life were filled with such loneliness, frustration and sorrow for me.  And I also reached out to others with the hope of somehow being released from the journey before me.

If I were sitting next to you, I would put my arms around you and allow you a good cry.  I would come over with coffee and just sit and visit and give you a chance to experience what a "morning out for coffee" feels like.  But because many miles come between us, let me offer you some encouragement.

What you are doing truly matters.  The endless sleepless nights, the speaking up when your child can't, the loneliness and sorrow.  It is all working in you to create a beautiful masterpiece.  While I was going through the early years with Caleb, I thought I was sacrificing myself and giving up my dreams.  In a sense I was, but what I received in return has been a change within that I never could have imagined.  I have become stronger and wiser. I am patient and caring.  I find value in so many things that I never found valuable before.  I see beauty where before I only saw heartache and sorrow.  What is occurring in you is the burning away of all self-centeredness and it is being replaced with a beautiful thing called love.  

Please reach out to others who can help (a counselor, a pastor or a friend who really understands).  There is no value in traveling this path alone.  And rather than fight what you are feeling, allow it to occur and over the years, sit back and watch the beautiful life that happens not only in your child, but especially within you.

Traveling With a Special Needs Child

Caleb was discharged from the hospital in January and by the time Easter rolled
around, three months later, we felt the need to travel. All of our family is out of state,
and we had been used to traveling several times a year in order to spend time with
loved ones. We saw no need for this to change, and so as April rolled around, we
packed up Caleb, his ventilator and all of his equipment and headed out on the four
hour trip to spend the weekend with family.

The drive to Michigan was uneventful, and we felt pretty good about our
independence and our ability to continue on with life as we had previously done.
Once we arrived, the unpacking took a little longer than normal, and we had a lot
more luggage, but nothing would deter us. The problems didn't arrive until nighttime
set in. As the house became quiet and we all turned into bed, Caleb's alarms began.
We were used to having a nurse at home, but so far away we were on our own. As
soon as we would fall asleep, Caleb would disconnect from the vent. We took turns
getting up to re-hook him, but as the night wore on and the alarms continued, our
patience began to wane. It seemed that we could not sleep for more than fifteen
minutes in between each alarm. By 4 o'clock in the morning I was ready to reload
everything and head back home.

As the sun began to rise, so did Caleb and the rest of the household. Our interrupted
sleep was over, and we were to begin a new day. We took turns trying to nap, but
this seemed to defeat the purpose of being together with family. As day two turned to night, we settled in for a repeat of the first night. Morning found us packing up and heading home, short on sleep and patience.

The trip back to Ohio was filled with an air of defeat. We had made the trip, but had
it been worth the trouble? We didn't bother discussing much as we knew that in our
exhausted state, nothing productive would transpire.

As the years passed, Caleb's night time venting became much easier. He slept more
soundly and the alarms became few and far between. This made for easier sleeping,
but our daytime with him became more difficult.

Caleb was becoming ambulatory and beginning to explore everything. And not in the
way a typical child would, but in a destructive way. He would wander from room to room,
and anything he would pick up seemed to end up broken. He loved to try to take
things apart, and this led to needing constant supervision. I do not exaggerate when I
state that at all times either Bob or I would need to be with Caleb. In this manner, one
of us would be able to visit, but the other wouldn't.

Again, we began to wonder at the value of the effort needed to take these trips. And
yet, family was such an important part of our lives. We needed to find a way to make
this work. Some things could not be changed, but others could be altered to make the
trips more enjoyable and slightly less exhausting.

In the hopes of helping other families navigate their travels with fewer struggles, I
have compiled the following lists:

Things I would have done differently

• I would take the first year and do no traveling. I would welcome family that 
would like to come our way, where our support system was in place. 
• I would educate and include my family more in the care of Caleb. I imagine 
some of them would have been willing to take a turn at following Caleb around 
while we were visiting. 
• I would sleep all that I needed and view the time with family as a break for 
myself.
• I would be open and honest with family regarding the difficulties involved in 
traveling. 

 Valuable tips when packing for a trip  

• Have a master list of all medical supplies that will be needed. After Bob would
pack, I would use the list to double check that everything was loaded. There is 
no worse feeling than arriving at your destination only to realize that you have
forgotten the cord to a necessary piece of equipment. Four hours is a long drive 
when you have to turn around and go right back home.
• Bring plenty of your own toys and books to entertain your child. One time we 
brought a whole bin of supplies to keep Caleb entertained and in the same room
as the rest of the family. 
• Always, always have the phone numbers of your doctors and medical supply 
company. There have been a couple of times when our equipment company 
has been able to bail us out of a jam. 

Pointers for those who open their home to families with special needs children

• Remove any items that are breakable.
• Close and, if possible, lock doors that you do not want the child entering.
• Have available some of the child's favorite activities.
• Don't plan on sitting in one room and visiting. Be willing to go to a park, take 
a walk, include the child in a cooking activity, or follow the parent around 
room to room. 
• If a group is gathered in one room visiting, and you notice that the parent and
child are missing, seek them out. It is a very lonely feeling to be with a group 
of people and yet be sitting with your child in another room. 
• Engage with the child.  Even if the child cannot talk, still include them in
conversations and activities. Make comments during the conversation rather 
than asking questions (ie: This puzzle is tricky; you sure are working hard at 
it). 
• Be nonjudgmental of the parent and the child. Traveling puts children out of 
their comfort zone. Meltdowns and tantrums will be more frequent which in 
turn increases a parent’s stress. You may see the worst side of both the parent
and the child.
• Offer encouragement. A word of compliment regarding either the child or the 
parenting goes a long way. Parents of special needs children very rarely get a
pat on the back and they often feel as if they are failing. 

Traveling with a special needs child remains a challenge, but it has gotten much easier over the years. We no longer come home exhausted from our trips, and our family has learned a lot about Caleb. My hope for you is that whether you are the parent of a special needs child or the extended family, you will cherish the special life that has been added into your family.

A Mother's Guilt

As we settled into a routine at home, therapists began calling to set up their initial
evaluations of Caleb. The occupational therapist was the first to arrive. After
introductions, she got right to work. She began her evaluation with a questionnaire
on the milestones that Caleb should have reached. The first few I was able to answer
“no” to without any problem, but by the time I had reached the bottom of the list,
unable to answer “yes” to even one thing, my heart had dropped. I proceeded to tell
her all of the progress he had made, but none of it was enough for her to be impressed.

Now one could say that the very reason she was in my house was because Caleb was
delayed, but as a first time mother I began to interpret the delays as somehow being
my fault. I showed her how I held him, laid him to play, sat him in his little seat.
Everything I showed her seemed to be wrong. She wanted Caleb lying on his tummy
more; she wanted him being put in an upright position more; she wanted him out
of his little seat that provided so much support. I understood the logic in what she
was saying, but had I done nothing right as a mother? I thought motherhood would
come naturally. I hadn’t expected there to be so many rules. When she left, I sat
on the kitchen floor with Caleb and cried. I began to feel another heavy weight of
responsibility. Now I knew, I didn't just need to care for Caleb, I needed to do it the
right way. I wished I didn’t know.

The therapist would be back in three days, so Caleb and I didn't have much time to get
to work and make some progress. I began by lying Caleb on his belly, but he didn't
like it and started to cry. The crying set off the vent alarms, causing him to breathe
against the vent and turn blue. I picked him up to comfort him, remembering to hold
him in a way that would force his neck muscles to work. He cried more. I tried to
stop using his little seat so much, but then where was I to put him?  I couldn't win. I began to feel an underlying guilt that no matter what I was doing, it was never quite right or quite good enough. This feeling continues to this day.

For any parent with a special needs child, so much of the child's development rests on
you. Oftentimes services don't get provided unless you advocate for your child. In
Caleb's case, it started with the therapy. Not only did we have exercises from the OT,
but soon Speech and Physical therapy became involved. Each therapist gave me a
list of exercises that were to be done several times a day. Snuggling Caleb, just to
enjoy time with him, became a thing of the past. Now every encounter was filled with
therapy recommendations and every spare minute was spent advocating for additional
services.

Many of Caleb's needs have changed, but they still remain ever present. Caleb needs
structure in his days. He has a very hard time without a schedule. But although I
have tried, I cannot pull myself together enough to have a daily schedule. Caleb still
does not speak. How much of this is our fault? I don't know. We have tried over and
over again to implement methods to help him, but we can only carry it through for
a short period. He has recently begun using a new communication app on his iPad.
Once again we are trying to implement “talking” into our daily routines. But for how
long? A week or two until we don't see any progress and give up?

The difficulty is that with Caleb, and most special needs children, the progress is so
slow. What takes my other children ten tries to master, will take Caleb perhaps a
thousand. And there are no guarantees that he will ever be able to accomplish the
task. So oftentimes, after two or three hundred times, we become discouraged and
quit. But there is always the nagging feeling in the back of my mind that Caleb could
be doing more if we were more persistent.

I think all mothers live with a bit of the "never enough" guilt but perhaps this is
magnified with mothers of special needs children. I wish I had an antidote and could
provide it in this post, but I have not yet found one. I do know that if I could get
beyond this feeling, I would be able to enjoy my time with Caleb so much more.

I have recently begun learning about truly giving up control of the outcome of things
and resting in God's provision. Perhaps as I begin to allow myself to rest in His
sufficiency, I will learn that what I have to give is enough, even if the results I am
looking for never occur. And perhaps in the resting, I will come to a spot where
Caleb is also enough, just as he is, and I will begin to let go of all of the expectations
that hold me bondage in this grip of guilt.

A Word On Advice

A word on advice: Don't give it. 

I will step on many toes here, but know that I have no individuals in mind as I write this.

The reason this post will hurt so much is because I believe that all of us, including me, have failed in this area. Even as I type, I cringe at the memory of the times when I have gotten this wrong. We are in this together, so please let me be blunt and honest without the fear of spreading unintended offense.

Soon after we came home with Caleb, the advice began to poor in. It took on many different forms, but it all felt the same to me, as though the person giving it wanted to fix the problem rather than enter into my sorrow and grief. I needed someone to share my broken dreams, my heartache and my despair - someone who I could be real with, not put on a show for, having to act as if everything would be all right. I needed someone who could open up her heart enough to shoulder a bit of my hurt. But I could do none of this when the only thing being offered was advice.

The advice came in many different forms:

There was the well meaning church goer who prayed for Caleb's healing and then felt that we needed to believe and act like he was healed. This approach left no room for grief or sadness or sorrow. Once the prayer was done, it was time to cheer up and start speaking and living in faith. I believe that prayers are crucial, but when offering prayers, especially for healing, please know that the family must continue to live in the present situation until a miracle occurs. Just as Jesus wanted his disciples to stay awake and be present with Him as he was facing His final hours, please be present with the family until a time comes that God changes the circumstances. Allow them to feel the sadness and to be real with you. Continue your prayers in private, but when with the family be fully present to their current needs.

Then there was the well informed individual who provided us with articles on different ways to fix the problems. Nowadays, with the Internet, there is no reason to ever provide a family with articles unless they have specifically requested them. Trust me, they are getting plenty of advice from doctors, nurses, therapists, social workers and other professionals. Most families will have researched and read more than they can ever comprehend on the area of sickness that their child is experiencing. If a family feels that you have information they would like, they will be sure to ask you. 

The natural and holistic friends also began to offer names of herbal remedies and holistic approaches. The challenge here is that many families have just been going through months of medical interventions. They have now lost hope that the medical community can help them and so they are willing to reach out to anyone who throws them a life line. The danger in this is that these kids have many different things going on with their bodies. Without proper guidance, adding herbal remedies into the mix of all of their medicines can quickly become dangerous. I do believe that there is a time and place for holistic eating and wellness. I believe that changing a child's diet can often times help. But trust me when I say, if you are knowledgeable in this area, your friends are aware of your expertise. Again, they will seek you out if this is a path that they would like to explore. When you continue to offer them these choices, it feels that unless they try this path, it is their own fault that their child is still living with this illness. Just as someone who lives a more natural and holistic lifestyle might not choose to try a certain medicine or surgery, so a family may not choose to seek out natural remedies. Please still support them and enter into their lives. Be caring and compassionate and truly respect their choices. 

There was also the optimistic person who stated, "Everything will be all right. Just wait and see." This advice first of all is so wrong. Oftentimes, these families will never see a healing this side of heaven. They have now entered into a completely new way of life that they did not ask for. Of course, there will be good times and they will eventually adjust to this new life, but to rush that along is cruel and heartless. Try to imagine what your life would look and feel like if you had just experienced what they are going through. Spend some time with those feelings of despair. And then come along side the family with no promises of a brighter tomorrow, but with the offer of a helping hand to hold along the way.

Once you have walked with your friend for a year or two and have earned the right to give advice, you will know when the time is right to speak and when your words will no longer be looked upon as a quick fix but as a healing balm that will bring comfort and relief.

Again, I share this truly out of love. We so often get this area wrong and our well meaning intentions bring hurt rather than healing. Please take my advice to heart and the next time a word of advice forms on your lips, close your mouth, reach out your hand, come along side and begin walking the path with your friend.

Surviving the Pitfalls of Marriage Part 2

As we continue to look at the pitfalls that are present in marriages with special needs children, intimacy is another trouble spot.  After Caleb’s birth Bob and I looked at intimacy in a very different light.  I felt that enjoying myself during this crises was somehow a betrayal to Caleb.  Bob saw it as a way to remain strong and continue on, both as a husband and as a new parent of a child with so many needs.  Many years before Caleb was born, I had read an article about how the act of intimacy helps a man to feel connected to his wife during a crises.  Somehow, knowing this information helped me to understand where Bob was coming from and prevented me from misunderstanding his advances.   I can see how a wife, who has not been given this information, could struggle to overcome her feelings of betrayal, her weariness, or her distraction with all of the new demands in life, in order to meet the needs of her husband and the marriage.  This area requires great care and communication from both the husband and wife.  Misinterpretations can cause deep wounds that can create a wedge in the relationship, and once a rift is formed, neither the physical or emotional needs of either spouse will be met. If you and your spouse are unable to talk about these issues, than I suggest at least getting information so you can become enlightened to the needs of your spouse.  Hopefully by seeking help, you will be able to navigate this area without going under.

The constant need to make life altering decisions is another challenge in our marriage.  Though people might imagine otherwise, Bob and I still do not agree on many aspects of Caleb's care.  We have different views on what Caleb is capable of doing, what classes he should take at school, and what his needs are for various interventions. Though we don't always agree, we have learned to respect each others' viewpoints.  Practically speaking, because I attend most of Caleb's appointments and school meetings, much of the final decision making falls to me. It can be tempting to just have my way, but I value Bob's input and strive to honor both of us in the decisions I make. 

One of the hardest things about living with a special needs child is the deep feelings that we aren't able to speak.  Because end of life issues often arise with these children, they have to be addressed.  And who can admit that there are days or moments when we wish a different decision had been made.  After spending Caleb's 16th birthday at Chuck E Cheese, rather than celebrating his new driving abilities or anticipating college choices, Bob and I sat together and cried.  What was going to become of our child?  What had we gotten into?  Should we have made the decisions that we had made along the way?  The depths of these feelings are real and a sense of shame accompanies them.  The only person who can truly understand and relate to my thoughts is Bob.  I have realized, through both error and success, to allow our marriage to be a safe place for Bob and me to share our deepest fears and hurts; we have learned to never pass judgment or express shock at what the other has to share.  In this area of being vulnerable, we can be the closest of allies or the worst enemies.  The outcome rests in our response to each other.

Another area that continues to be a struggle for Bob and me is arranging a night away.  I truly believe that as a couple, we need to have a date night at least once a month, but in all honesty, there are times when two, three, or four months can pass before we get a nurse scheduled and a babysitter for the other children.  When this happens, I begin to feel disconnected and out of sync with Bob.  I interpret actions in a negative light and problems arise where no problems really exist. I need the time away to enjoy our friendship and to remember our relationship before children became a part of our lives.  I believe that couples often feel date night is a luxury that they don't have the time or resources to implement, but without time away, couples will begin to only connect on a practical level, losing the friendship and closeness that is needed to sustain a marriage for the long run.  If the time is not invested on this end, more often than not, couples will need to invest it on the other end, either in counseling or working through a divorce.  Please take the time and enjoy your spouse.

The above is certainly not an exhaustive list of the areas that a couple may struggle with, but it does reveal many pitfalls a marriage can experience. Without deliberate attention, these trouble spots can destroy a marriage. As I write this, I feel the weight this challenge brings, because couples living with a special needs child are already feeling stretched in too many ways. I know this post adds even more areas that need attention, but I believe that the marriage is the support that will hold the family together. Please take the time to keep your marriage strong because through the years you will cherish the bond that will form between you and your spouse. You will look back in amazement at the journey you have been on and will be forever grateful to have had someone by your side.

Surviving the Pitfalls of Marriage Part 1

Statistics show that when a special needs child is involved, eighty to ninety percent of marriages end in divorce.  I find these numbers staggering.  I also understand a few of the reasons behind the numbers, so I feel it would be a disservice to write a complete blog on living with a special needs child without at least addressing a few of these pitfalls. 

The differences between Bob and I were always present, but they only became glaringly obvious after Caleb was born.  Within two days of Caleb’s birth, Bob was leaving the hospital every morning in order to return to work.  Part of this was due to his strong work ethic (he has never taken more than a day or two off with each child), but part of it was his way to cope with all that was happening in our lives.  He needed the normalcy and the routine that work provided, while I couldn't imagine leaving the hospital for an hour, much less an entire day.  Throughout all of Caleb's life, he has been present when I needed him, but has never wanted to sit around and discuss at length the emotions and feelings associated with any situation we have faced.  Initially, I resented and even judged him for his “lack of caring.”  I felt I was the better parent because I was the more emotionally connected parent.  Over the years, I have learned that Bob’s way of interacting with the situation, is no better or worse than mine.   He is as much emotionally invested in our lives as I am, but shows it in a very different way.  I have accepted who he is and what he has to offer to our lives.  If I had continued to feel superior,  we wouldn’t have made it through the first year of Caleb’s life for rather than working together, we would have been fighting each other and insulting the way we chose to live out our new lives.  

Although I learned to accept Bob’s way of coping while we were in the hospital,  things got a little more difficult once we were home.  Because I was home all day, most of Caleb's care fell to me.  Caring for a healthy baby, let alone a special needs one, is exhausting, as all new moms know, and my weariness came to a head one night when Bob called home to tell me he would be an hour late.  I had been home, alone with Caleb all day, and I was through.  By the time Bob made it home, I was so angry at him, not only for being late, but also for leaving all of the work to me, that I refused to let him hold Caleb.  One of our few intense fights broke out over this situation.  I was a new mom, overwhelmed with exhaustion and loneliness, and I interpreted his coming home late as a lack of love for me – uncaring and cruel.  I told him that if he didn't care enough to be home on time then he didn't deserve to spend time with Caleb in the evening. 

I am not proud of this episode, but it shows all of the different emotions that became part of the misunderstandings within our marriage.  Many of these issues could have been prevented if I had developed friendships with other stay at home moms.  Then I would have had  someone to call and a listening ear.  But I had just left the workforce and had not made any connections with other moms.  Even in today's world, with the Internet , I feel any mom coming home with a special needs child should have a few other women who have walked similar paths, who she can connect with and call during the hard times.   This struggle with loneliness continued for many years, but gradually I began to  develop close friendships with other moms.  Some are on similar journeys, and some are on very different paths, but they have provided me with a place to turn when life becomes too much.  I believe these friendships have helped me to accept Bob for who he is, rather than to try to mold him into someone who can meet all of my needs.  No one person can ever meet all of our needs, especially when that other person is living through a crisis, and placing that burden upon a marriage is often enough to make the marriage crumble.  

To Be Continued next week.