It Takes a Village

Splish splash in the tub!

Physical Therapy for a Child with Disabilites

This week, Lily has started wearing "Big Girl Shoes". And while her progress is slow, it is still so very exciting! There are so many things she can do now and her personality is blossoming.  She has quite a temper and doesn't mind letting you know when she is unhappy.  Not only will she tell you "no", but she will also tell you to "stop".  And her favorite people to boss around are her physical therapists.

Twice a week Lily has physical therapy.  Her therapist works with her at the day care facility she attends and in our home. This can be quite a scheduling mess as my husband and I try to fit in the activities of our other two children, church, work, doctor appointments, community responsibilities, and time for ourselves.  But our physical therapist is wonderful about working with us and accommodating our extremely hectic schedule.  And with this many visits, it is easy to see how Lily is able to easily recognize the face and voice of her therapist.  Sometimes Lily reacts to her with excitement and playfulness, while other times she reacts with anger and frustration.  Unfortunately, the physical therapist is used to these reactions from all her patients because she is tasked with the responsibility of forcing the children to do what is not natural or comfortable for them.  And Lily is no different.  Because of muscle weakness, Lily has an extremely hard time using her lower body and left hand.  She is easily tired and frustrated, often crying out in anger and pain.  But her physical therapist continues to push Lily and us.  She encourages us to continue to fight the weakness and the exhaustion and the frustration.  Lily not only needs her loving family in her corner, cheering her on, but she also needs the therapist, challenging her abilities.  The physical therapist has shown me the intricate, tender art of tough-love for the special needs child.

Lily playing with her Daddy!

In addition to a physical therapist, Miss Lily Pad also requires a developmental therapist.  While the physical therapist works on Lily's muscular movement, strength, and endurance, the developmental therapist works on Lily's developmental milestones such as verbal skills, fine motor skills, language recognition, and cognitive learning.  The developmental therapist visits us once a week.  Again, this is in addition to the physical therapist and other doctor appointments Lily requires.  This, of course, adds to our busy weekly agenda, but the developmental therapist is excellent about working with our family and remaining flexible in scheduling.  And Lily recognizes the face and voice of this therapist as well, however Lily does a lot less crying during these therapy sessions.  During this time, we get to focus on the therapeutic benefits of creative play.  My husband, myself, Lily, the therapist, and sometimes our other two children get in the floor together and just play, laugh, and be silly while teaching Lily Pad.  The developmental therapist has taught me that a special needs child needs LOTS of silliness and play.

In any given week, Lily may have from one to three doctor appointments.  There are weeks when we have none, which is nice because it used to be a weekly event.  She is currently being seen by an optometrist, a pediatrician, a neurologist, a dentist, and a physical therapy evaluator.  Recently, we have dropped the hematologist from the cast because Lily has not had another stroke.  All of these physicians work in concert to provide Lily with the attention and care she requires.  And it is comforting to have loving, knowledgeable, and understanding doctors looking out for Lily.  These physicians have taught me how individual professionals can harmonize with others to bring total care for the special needs child.

During the day, Lily attends a daycare that advocates for the special needs child.  Lily is still in the infant room at her daycare because she cannot walk and because of her other physical needs.  And the daycare providers have never pressured me into advancing Lily to an older class for which she was not yet prepared.  They have been more than accommodating in allowing the physical therapist and other supporting staff to visit Lily at the daycare.  The caretakers in Lily's class have also undergone training by the physical therapist in handling, teaching, supporting, and challenging Lily.   In addition, they have helped to alleviate some of the financial burden that comes with raising a special needs child by never charging us a higher fee for her specialized care and even giving us fee forgiveness when Lily was hospitalized and recovering from her shunt surgeries.  This group even raised money to help our family.  They love Lily and spoil her and treat her the way I would treat her.  These caretakers have taught me about mercy and kindness, both which are greatly needed by the special needs child.

I guess what I am mainly reflecting on this evening is how one child can bring together an array of individuals from various backgrounds, education levels, and talents.  Each individual has a detailed role in Lily's development while also playing an integral role in the team effort approach to her care.  Raising a special needs child not only requires loving parents but it also requires a village of professionals to nurture the growth of our sweet Lily Pad.