My
Hypothetical Family Situation
I am married mother of 4 children; 2 girls, 2 boys, and a husband
who travels 70% of the year. I was pregnant with our last child, a boy, and had
to be hospitalized at 22 weeks because my cervix was dilating. After a cerclage
(sewing the cervix closed), I was hospitalized to monitor myself and the baby
in hopes to prevent a premature delivery. We are told the risks of delivery prior
to the 27th week are death, blindness, bleeding on the brain which
will cause severe mental disabilities, and developmental delays. Our son,
Xavier, was born at 24 weeks, 3 days weighing 1lb, 10oz. He was not blind but
had ROP (retinopathy of prematurity) requiring laser surgery to help connect
the nerves in his eyes; had no bleeds on the brain, and remained in NICU for 11
weeks. We later discovered because the umbilical cord was prolapsed and he went
without oxygen for an unknown period of time, which caused a mild form of
Cerebral Palsy that affected his lower extremities orthopedically, and
therefore took longer for him to sit, stand and walk on his own. Xavier has
been diagnosed with CP, Autism, developmental delays, and Sensory Integration
dysfunction.
We are a middle class family so my husband and I decided that I
would remain home because Xavier needed physical, occupation, speech and
sensory therapy 3 times weekly for 30 minutes for each equating to
approximately 2 hrs 3 days a week not including travel time there and back.
That coupled with the having to transport and care for my other 3 children made
working outside the home virtually impossible and we were ineligible to receive
any government assistance for early care programs, although it would be nice to
have someone to care for all our children so that we can have some leisure
time. Unfortunately, finding quality dependable childcare or nanny services for
that matter has proven to be quite frustrating and unsuccessful especially when
I need a break or simply want to travel with my husband. My extended family
support is limited because everyone had their own children to take care of and
because of Xavier’s special circumstances.
The challenges I face are having access to doctors and therapists
that could accommodate Xavier needs in a timely and consistent manner; in home
therapy; having a preschool that provide safe transportation to and from the
school, even for half day students, resources and support groups with which to
connect to get the emotional, and possibly physical help (maids, nanny) to
assist in taking care of the children; in home tutors; resources to help
understand our rights with regards to an IFSP and IEP and how they will affect
Xavier and our family.
Colleagues, below are some questions for you to consider as I you read my situation. Please let me know if any of these apply to me:
Colleagues, below are some questions for you to consider as I you read my situation. Please let me know if any of these apply to me:
- Have I given a complete picture of my family, or are there
details missing that I should include in order to complete the assignment
successfully? If so, what are your suggestions?
- Is this situation realistic?
- Are there any specific websites I should be reviewing with
regard to learning about quality services and programs for my child and
family in this hypothetical family situation?
- Does anyone have any thoughts, based on my specific family situation
that will affect the early childhood system I am creating?
This situation is very realistic. I actually thought it was your actual experience or that of someone close to you. One service that may be helpful is a Child Care Resource & Referral agency. I actually work for such an agency in my community. We have families that call who are faced with similar situations. We can inform them about aspects of quality child care, provide them with referrals and additional resources, as well as connect them with other services in the community the may benefit their child and family. Great analysis.
ReplyDeleteDianna,
ReplyDeleteWOW! You did an AMAZING job on your hypothetical family situation! Very thorough! In my hypothetical family situation, I too, delivered my child at 24 weeks but my daughter was born with gastroschisis (an abdominal wall defect like omphalocele in which the anterior abdomen does not close properly allowing the intestines to protrude outside the fetus) which was corrected. In my situation, my daughter was being feed from a feeding tube and showed signs of developmental delay in the form of only being able to turnover at 6 months old. In my reality, my husband used to work for Pediatria: Healthcare for Kids which specialized in medically-fragile children...this would be a great resource for the mother in your situation to start with! Awesome details!