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 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.