My Goals for Advocating for Premature Children
By Patti Wrape
I would hope that all parents, grandparents, friends of premature children become advocates for premature childrens’ rights. Here is my story and policy recommendation, which you can adapt and forward to your local educators and political representatives.
I am the mother of natural twin boys (my first children) who were born without any prior warning or complications at 27.5 weeks gestation. Connor and Nick weighed 2 lbs, 2 oz and 2 lbs, 1 oz, respectively. They spent three months in the hospital, much of it on oxygen and both came home on their due date of 10/16/96 weighing about 4 ½ lbs. Connor had NEC while in the hospital, which cleared up, and Nick had suspicion of ROP, which thankfully did not develop. The boys were on apnea monitors for 6 months and had colic so it was rough but we were lucky in that we avoided major medical complications. Connor and Nick participated in a hospital based developmental follow up study and we were told that they were "caught up" at age 1 ½.
At age three we realized that they were behind in several areas, particularly language development, but we chalked this up to being boys and twins. One of our sons also had significant behavioral "events". We thought it was just a behavioral issue as intellectually the boys excelled in many areas, they were doing their alphabet, numbers, colors, etc. at an extremely young age. We consulted a behavioral specialist and did Love and Logic parenting when in fact giving the boys choices probably only worsened matters as they need structure. After being very consistent in discipline, etc. for 6 months we saw little improvement and finally undertook a school based developmental assessment. The boys were found to have developmental spikes, they would score in either the 90th or zero percentile on assessment tests. The assessment team determined they did not have a delay as much as an undetermined disorder. We had the boys assessed by a Child Development Team at our local Children’s Hospital and they diagnosed them as having PDD/NOS (Pervasive Developmental Delay, Not Otherwise Specified) - basically it means they have some autistic characteristics but not enough to be specifically labeled autistic as well as some other developmental delays. We are now waiting for them to be assessed at an autism center. I’ve done some research into the link between autism and prematurity and the medical community response is that there is "no conclusive evidence linking prematurity and autism; however, as far as I can tell there has also not been any research to establish whether or not there is a link I think basically the medical community is saying that they can neither confirm nor deny that there is some form of prematurity induced developmental disorder with autistic traits.
My sons have been in integrated school based special education preschool which utilizes the LEAP program and PECS (picture communication strips) for about seven months. It has a high teacher ratio, with incredible teachers and includes parent home visits and involvement. Connor and Nick are thriving and their progress has been incredible. However, children who turn five by September 15, 2001 are required to move onto kindergarten, my sons were born on July 24th but were due, and were released from the hospital on October 16th (after the 9/15 cutoff date). I do not believe that they will chronologically be age 5 on 9/15 and would like to utilize my son ’s adjusted birth date in lieu of their actual birth date. In fact, I believe that all parents of premature children should have the option of using adjusted birth date at their discretion. As a result, I conducted research into premature children and development, as I wanted to dispel the myth that preemies "catch up" by age three and wanted to support my adjusted age case and goals for advocating for children born premature. (See research link below.)
We have had to get a lawyer and are fighting the school district to get
another year of preschool for our sons. I am also working
with a State Representative to try to introduce legislation that
would allow parents of severe preemies to use gestational age without
having to go through the expense and hassle we’re going through.
In addition, I hope to pitch a book idea in the next year and would welcome
participation of parents who have preemies with autistic characteristics.
It would be called "Still Playing Catch Up". Each chapter
would be written by a parent of a child with prematurity relating their
birth experience, when and how they realized there were developmental
issues, and what they’ve done or are doing in terms of intervention and
treatment. All contributors would agree to waive any payment (including
myself) and any proceeds from the sale of the book would be donated for
research into the link between prematurity and autism. If you would
like to contribute to this book please contact me directly at email@example.com.
I am not a medical expert but I have drawn the following conclusions and I believe:
o There is a neurologically based developmental disorder that appears in about half of preemies that do not have other medical problems. One researcher called it a "sleeper phenomena", as children may appear to be fine until preschool age. It is a disorder and not a delay because there are “spikes" in learning and functioning. The severity ranges and it may appear similar to highly functioning autism in some cases but does not have other characteristics of autism. In less severe cases it may appear more like a learning disability and the child will compensate for it by building on other strengths. The most likely cause is either moments of oxygen deprivation during prematurity or simply being moved from a peaceful womb to a pinball arcade atmosphere, not allowing the brain to properly or completely "wire" itself.
o I also believe that early intervention and environment can mitigate many of the effects of severe prematurity. Just as individuals recover from a stroke or head injury effective intervention can stimulate brain activity and allow it to mend itself. However, just as children learn a second language the earlier they are exposed to it, there is a window of time in which intervention is most effective. A program of occupational, speech therapy and a good special education program that includes socialization skills is required to mainstream premature children.
o However, many premature parents are not informed of the need for early intervention and do not have access to appropriate programs. This is because many educators and doctors have yet to recognize "impacts of prematurity" as a developmental disorder in and of itself. Prematurity is increasing due to the use of surfactant, use of fertility drugs and due to woman delaying pregnancy until later in life. But proper research and resources have not been allocated to the subject of prematurity because the perception still exists that "preemies" are the results of at risk behavior, "crack moms", fetal alcohol syndrome, etc. and that most preemies are already doomed to have problems and be underachievers. In addition, neonatalogists (who do incredible work but are not child development experts) frequently tell parents that their preemie child will "catch up" causing many parents to adopt a "wait and see" attitude, when they should be seeking early intervention services.
I would like (hope/dream) that all parents, grandparents, friends of premature children become advocates for premature children's’ rights. My wishlist, which you can adapt and forward to your local educators and political representatives, is:
1. All parents of preemies would be allowed to use adjusted age in lieu of birthdate at their discretion for school, sports, etc.
2. There should be a centralized source at the federal and state levels to serve as an information clearinghouse for information and research on premature children and how to find resources and support.
3. Neonatal units would be required to provide parents of preemies with contact information for this information clearinghouse. Parents should be encouraged to have children undergo a full developmental screening at age 3.
4. Further (some?) funding should be allocated to research educational
delays in premature preschool age children and recommendations should
5. A grant should be allocated to a medical school and engineering school
to conduct a pilot study for a less invasive neonatal unit which is more
womb-like; the technology exists, the motivation does not.
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Information and Encouragement for your Preemie Baby and Preemie Child
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