By Rachel Losey, co-leader of API of Norman, Oklahoma
**Originally published in the Fall 2007 Special Needs issue of The Journal of API
Rachel and Cora
Motherhood was different than I expected it to be. I never imagined that I would have an inconsolable baby. I always imagined that through Attachment Parenting (AP) principles, I would have a happy, healthy, “normal” baby. It is only those babies who are not breastfed, not co-slept, not worn in slings, and who are rarely touched who cry for hours and hours, right?
I couldn’t have been more wrong.
Cora was a peaceful newborn until day three – when my milk came in. Within hours of that first nursing with my full supply of milk, all of our lives changed forever. She cried for more hours than not, each day. She never slept for more than 45 minutes at a time and only when she was in my arms. She arched her back, held her little tummy – trying to tell us she was hurting. Bowel movements became an act of torture for her.
The Doctor Says Colic – and Co-sleeping – to Blame
We went to the doctor. I was told by our pediatrician to stop breastfeeding, put her in a crib, and read Ezzo’s baby training books, but we chose not to take any of this advice.
**Orginally published in the Fall 2007 Special Needs issue of The Journal of API
Anna & her cochlear implant
When my granddaughter Anna was already over a year old, her parents began to realize she did not hear. Before this, Anna had made lots of sounds, including “mama,” “dada,” and everything else babies usually say. She seemed very tuned-in to everything around her, knew when her mom came home and made the sign to nurse before mom even came into view. But she had never startled to sound of any sort.
Her older siblings played a game of coming up behind her and tapping her shoulder, whereupon Anna would spin around and laugh hysterically. Her parents realized that she did not hear her siblings sneaking up on her. As Anna stopped vocalizing, her parents became concerned that she was losing her hearing.
Her audiogram at 15 months showed Anna to be profoundly deaf and subsequent CT and MRI imaging indicated that she was missing more than two-thirds of her cochlea – inner ear structures that form at six to nine weeks gestation. She was also missing the acoustic nerve on one side. Anna never had hearing. (There is no prenatal testing or imaging that could have shown this.) Continue reading Anna’s Story: The Importance of Hearing Screenings in Newborns→
**Originally published in the Fall 2007 Special Needs issue of The Journal of API
Jackie
Jackie informed me yesterday that when she has her own children she will never tell them “no.” Never. I smiled and wished her luck with that. Then, today after school, she informed me that she thinks she might sometimes need to tell them “no.” Sometimes.
Jackie is a healthy, mostly happy 11-year-old child with special needs. What makes her unique is that she has pervasive developmental disorder. She has some autistic features mixed with a possible mood disorder, though some days I wonder if her mood swings are more related to her approaching coming-of-age. I do not believe there can be anything more emotional that impending menstrual cycles for a young pre-teen. Sigh. When did I become the mother of a pre-teen?
About PDD
The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before three years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings; and repetitive body movements or behavior patterns.
Autism is the most characteristic and best-studied form of PDD. Other types of PDD include Asperger’s syndrome (a high-functioning form of autism in children who generally have high IQs), Childhood disintegrative disorder (in which a child may develop fairly normally until 18 to 36 months and then begin to regress, especially in speech and social interaction), and Rett’s syndrome (a neurodevelopmental disorder found almost exclusively in females and characterized by normal early development followed by loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gut-associated lymphoid tissue abnormalities, seizures, and mental retardation).
Children with PDD vary widely in abilities, intelligence, and behaviors. Some children don’t speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.
Practicing Attachment Parenting has enabled us to be more responsive and more intuitive to Jackie’s needs. My husband and I can often sense what she needs from us and her environment, which is key to our preventing meltdowns and struggles.
We also feel strongly that we help her by having a support system for us. We rely on a support team including family, friends, and people from the school system who work with Jackie. Sometimes we need respite care, an extra set of hands, or a parents’ night out. Our sitters are well trained to work with children like Jackie, and all of our kids look forward to the special playtime. We enjoy coming home relaxed and rejuvenated, and know we are in a better place to cope with any challenges that might arise.
Different is OK
One of the hardest challenges with raising a special needs child is trying to keep people, including us as her parents, from attempting to force her into being a “typical” child. Jackie is different. She will always be different, and I celebrate that difference.
That said, it’s not all roses. There are some thorns. We have struggled with defining what Jackie needs in her school environment. We have also struggled with therapists and psychiatrists who have tried a one-size-fits-all approach to Jackie’s challenges, including the use of medications.
A Trial of Medication
We resisted using any medications for a long time, despite the pressures. When we had our fourth child, things really bottomed out for her. She was in such emotional pain. We decided it was unfair to not at least investigate and try medications. We started out with high hopes, but soon realized that our daughter had become a proverbial guinea pig.
We tried half a dozen medications over the course of 18 months. I know some children receive relief from medication, but Jackie never did. In fact, they had a negative effect on her system and she seemed even worse. It was heartbreaking. We ended the experiment and weaned her off all medication.
Jackie hit a new low while weaning from the medications. Then, after a month, she seemed herself again. She became more in control of her emotions and behaviors, and her humor returned (something I hadn’t quite realized how much I’d missed). She seemed settled. I cannot quite explain it, but she just seemed more like the daughter that we knew and loved – quirks and all.
Two Steps Forward, One Step Back
It’s been about six months, and Jackie continues to improve. She takes two steps forward, then one back (sometimes three back), and then she makes progress again. She was recently able to transition from the special needs school bus to the regular school bus, which was an important milestone for her.
No matter how hard we attempt to prepare her to be confident with her special needs, as she gets older there will always be the pull to be more like a “typical” children. She will always want to be “normal.” We embrace Jackie as she is. We have taught all of our children that we are each unique, and we encourage them to be accepting of others, even those who face challenges that make them difficult to deal with.
By Dr. James MacDonald, founder of the Communicating Partners Program
**Originally published in the Fall 2007 Special Needs issue of The Journal of API
It is now clear that a child can learn in every social interaction, anywhere. The more a child interacts, the more the child will learn, communicatively and cognitively. The key factor is for the child to have many one-on-one partners who act and communicate in ways the child is capable of and interested in.
While this is true for typically developing children, the exciting finding is that it is also true for many “late-talking” children such as those with Autism, Down syndrome, apraxia, and other delays.
What is Apraxia?
Apraxia is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently, and not due to weakness or paralysis of the speech muscles. Developmental apraxia of speech (DAS) differs from developmental delay of speech, in which a child follows the typical path of speech development but more slowly. Children with DAS may have difficulty putting sounds and syllables together in the correct order to form words, or may incorrectly use the varying rhythms, stresses, and inflections of speech that are used to help express meaning.
Many parents and professionals act as though a child, especially one with delays, will only learn to talk with trained professionals in therapy and school. This is a myth that can keep a child from his most important teachers – his family.
Even if a parent has only one hour each day of one-on-one time with his or her child, she still has about 11 times more interactions with her child than professionals who see the child for only one session per week or are managing a classroom full of children. The difference is much more pronounced in the early, most vulnerable years, when parents often have much more than one hour each day with a child. The difference is even greater than 50 times more than direct contact than with professionals (given several hours of contact at home a day). And since children can learn to interact and communicate in every one-on-one interaction, parents clearly have an enormous advantage over professionals in having developmental impact on children.
Even so, many parents believe their child will learn to communicate in the tiny proportion of time they spend with professionals. They will fight hard for an extra half hour of therapy and yet ignore the power they have in their many hours with the child.
Parents usually have very little training as to how they can effectively help their children socialize and communicate. Consequently, it is clear that professionals will have much more developmental impact on children when they educate parents in effective natural teaching strategies.
Connecting with our children for a more compassionate world.
It is now clear that a child can learn in every social interaction, anywhere. The more a child interacts, the more the child will learn, communicatively and cognitively. The key factor is for the child to have many one-on-one partners who act and communicate in ways the child is capable of and interested in.