QUESTION: My daughter is five years old and has Down Syndrome. She suffers from quite a few developmental delays. Our intervention includes a lot of different therapies from her school. These include speech, occupational, and physical therapies. I noticed that she tires easily after school. Are the therapies too much for her? Can I ask the school if they could limit the therapies? I’m afraid that she might get left behind or slow down in her development if she does not receive all the therapies. Is it also possible that I can do one of the therapies myself at home, like speech therapy?

Teacher Genevieve says: Early intervention is critical in achieving the optimal development of children with Down Syndrome. As a parent of a child with special needs, I commend you for not wasting any time seeking for therapy services that would help her acquire the necessary developmental skills that will set the stage for future learning. It is obvious that you want to give her all possible opportunities to learn and achieve the milestones expected for her age.

However, it is important that you also see to it that she is in the best of health since she is first and foremost, a child, who has basic needs that have to be met like the need for adequate rest and play.

CHILD FIRST, DISABILITY SECOND

Most often than not, when a child is born with special needs, the disability becomes central to perceiving the needs of the child. Parents are overwhelmed with the number of doctors and therapists to consult, the series of tests that the child has to undergo, and referrals to consult with different professionals, while still trying to deal with the diagnosis of having a child with a disability and its implications to the child and the family, both short-term and long-term.

Amidst the whirl of appointments and consultations that follow the diagnosis, parents are sometimes left with no choice but to follow the recommendations of the experts for fear of missing out on target developmental goals if the recommendations are not followed to the letter.

Then again, recommendations have to be discussed thoroughly and agreed upon by both parents and professionals since each family’s context is different from that of other families.

Recommendations have to be given in consideration of the family’s resources and priorities in coming up with a systematic and wholistic program of intervention that would not in any way compromise the child’s basic needs for safety and health. Your daughter may have Down Syndrome, but her basic needs are the same as that of any other child.

EMPOWERING FAMILIES

The frequency of sessions or the nature of therapies needed by every child with Down Syndrome differs since each child with Down Syndrome is unique in spite of some similar traits and manifestations that characterize children with this condition. How much of speech, physical or occupational therapy is needed would depend on many factors such as the developmental age of the child, the priority developmental targets at a particular stage, concurrent medical & educational needs, and the capacity of families to carry-out intervention at home to complement center — or school-based therapeutic intervention.

An important component of effective early intervention programs is family-centered practices. The child with special needs spends a few hours each day with the therapist, but spends most of his/her time at home with the caregiver or family. Therefore, therapists have to exert extra time and effort in creatively training family members and yayas, whoever is the primary caregiver, to implement home-based interventions consistent with the program being followed by the child in the school or the early intervention center. By doing this, the development of the child will be optimized even if the frequency of center-based interventions is decreased.

Research would show that the developmental gains that can be achieved with effective home follow-up complementing center or school-based intervention is expected to be greater than frequent therapies availed of by the child with limited or no parental involvement All programs for children with special needs should have a family-centered philosophy. Professionals should recognize that the family is the constant in the child’s life. Do not be afraid to talk to your therapists and doctors about your concerns since you are not mere recipients of services, but are active partners in planning and implementing your child’s early intervention program.

Allow me to share this poem by an anonymous author which beautifully expresses how you and your child’s teachers should work together in partnership and mutual respect for the benefit of your child with special needs:

TWO SCULPTORS

I dreamed I stood in a studio
And watched two sculptors there.
The clay they used was a young child’s mind
And they fashioned it with care.
One was a teacher; the tools she used
Were books, music and art.
One, a parent who worked with a guiding hand
And a gentle, loving heart.
Day after day the teacher toiled
With touch that was deft and sure.
While the parent labored by her side
And polished and smoothed it o’er.
And when at last their task was done.
They were proud of what they had wrought:
For the things they had molded into the child
Could neither be sold nor bought.
And each agreed he would have failed
If he worked alone:
The parents and the school,
The teacher and the home.

The author is the executive director of ALRES-PHILS. and the chairperson of the SPED Department of Miriam College. A pediatric physiotherapist and special educator, she is currently pursuing her doctorate studies majoring in Special Education at U.P. Diliman. She is a staunch advocate for children with special needs.

If you have any questions, please feel free to ask our SPED specialists. Just send your queries to youth@mb.com.ph