Medical Monday – Our Journey – Schwedt Family

The Early Days

While living abroad in Hong Kong in 2004, I knew that adoption was in my future but my husband was not yet on board.  In 2006, we began our formal adoption journey.  Like so many other families at that time, we requested a little girl with “no known medical conditions”.  Why?  As first time parents, it simply was not on our radar to consider a special need OR a boy.  As the wait continued to increase and our frustration level grew, we began considering other options.  In June of 2009 a series of events opened our eyes and hearts to boys in the waiting child program.  After doing our research we took the leap of faith and switched to the waiting child program.  That was the best decision we ever made.

Fast-forward to April 2010.  We met our son for the first time.  He was so gentle and truly amazing.  Although we thought we were well versed in cleft parenting (thank you Google), we had only scratched the surface.  Tyler had a 3rd degree unrepaired, unilateral cleft lip on palate.  That sounds scary, right?  The first year home consisted of 2 major surgeries, lots of doctor appointments, therapies and more.  His cleft lip and ear tube surgeries occurred right away.  Speech therapy and occupational therapy began shortly thereafter.   Six months later he had his cleft palate repaired.  Within the first seven months home, we had all been through a lot.  During this time, our scared little guy had transformed into a curious, playful, happy little boy who was full of life.  He learned basic sign language very quickly and found that he could get his needs met by signing.

Tyler Match

During all this craziness, we began the adoption process again for Tyler’s sibling.  We had no doubt this time – we were open to boys with cleft and many other special needs.  In 2011 we met our newest family member, Connor.  He also had a unilateral cleft lip and palate.  This time we knew the drill – scheduling appointments with the cleft clinic, with speech therapy and all the other doctors and specialists.  We worked hard to get the initial surgeries done so we could begin functioning as a new family of four.  We spent the next several years going to therapies – speech, OT and family integration.  It was not easy working all these appointments into daily life, but it proved to be very beneficial.

Connor Match

It was an interesting time as the boys learned to be brothers.  There was a lot of jealousy and fighting in the early days.  This also brought out many tough feelings and struggles for Tyler.  We learned very quickly what it meant to parent a trauma kiddo.  We are still learning as the face of trauma changes over time.

Schwedt

Our Life Today

Things have really settled down in our world.  We still attend speech therapy and probably will for many more years.  It is just part of our life but it’s become a smaller part.  The boys have gained tremendous confidence and continue to improve their verbal communication everyday.  We see the Cleft Team at Children’s Hospital annually and we are gearing up for the next round of cleft-related procedures (palate expander, braces and bone graft).  We are happy to be part of a local cleft support group in our area.  This will become increasingly more valuable as the boys understand their cleft condition more thoroughly.

Tyler & Connor Today

While the boys are less than 100% intelligible (ability of the average person to understand them), they continue to improve through focused speech therapy (via an IEP) and through continuous practice.  Both boys landed a spot in their class play.  That alone is a huge honor and achievement.  We’ve been very fortunate to have wonderful and supportive teachers who encourage the boys on all fronts.

We also see a family therapy to help with life, in general.  The boys both struggle with attachment and anxiety in their own ways.  We need the support of a trained therapist to help teach us how to best navigate the waters.  Everyday we see progress, but it’s slow.  We’ve had to lower our expectations on this front.

Life is still GREAT despite these challenges.  The boys are doing well in school and have adapted quite well socially.  They also both love sports – all sports too. Most days they are best buddies and they share a deep and intense bond.  They are deeply vested in each other’s life and take of each other always.  Life gets better everyday and the cleft- aspect has become a minor hiccup in life.

Here are some pictures and videos that sum up our life today:

Schwedt_3 Schwedt_4 Schwedt_5 Schwedt_6 Schwedt_7 Schwedt_8

My advice to potential adoptive parents thinking about CL/CP – educate, connect, prepare and enjoy.  Do your research and understand what is involved in raising a cleft kiddo.  Be honest with yourself about the condition.  They are many great resources out there.  My personal favorite is:  www.cleftline.org.  Also contact a local cleft team and discuss this condition with them.  Ask about surgeries, timelines and syndromes.  Talk to other CCAI families with cleft kiddos.  I cannot stress this enough.  We met with a couple of families in advance and took the fear away.

Some days have been tough, especially around surgeries, recoveries and therapies, but it’s been worth every minute.  Please reach out to me if you’d like to learn more about our journey or if you have any specific questions.  You can reach me at s.schwedt@comcast.net.

Schwedt_9Here is a checklist I put together previously that summarizes my recommendations.

Educate & Connect:

  • Discuss this need with your social worker
  • Ask CCAI for a list of reference families
  • Conduct reference calls, emails or meetings
  • Research the special needs conditions that you are considering
  • Be HONEST with yourself on which needs you are OK with accepting
  • Gain a basic understanding of surgical requirements and recovery period
  • Verify your insurance coverage
  • Understand additional therapies (i.e. speech, occupational, PT)
  • Gain family support
  • Submit your Waiting Child form with confidence J
  • Wait, Wait, Wait but continue to educate (IEP’s, Early Intervention programs, join CL/CP communities including on Facebook, met with a cleft team, etc.)

Prepare & Enjoy:

  • Schedule initial visit at a Cleft Clinic as soon as possible
  • Expect to see several specialists during this visit (ENT, surgeon, pediatrician, dentist, occupational & speech therapist, geneticist, audiologist, etc.
  • Do not let the information overwhelm you – take it in stride. Schedule surgeries when ALL of you are ready.  Consider the importance of bonding prior to jumping into a major surgery.  Delaying this surgery a few extra months is not that big of a deal compared to the surgical trauma it could cause.
  • Consider combining it with other surgeries (i.e. ear tubes) if required
  • The surgeries are long, prepare to stay overnight
  • At home, you are the NURSE – be ready for it
  • Get creative while on the liquid or soft food diet – anything can be blended or pureed even mac & cheese (I have many “recipes” to share)
  • Wear the arm restraints and listen to the doctors
  • Schedule annual cleft visits to ensure progress
  • Schedule various doctor’s appointments as needed
  • Get the recommended lab work drawn
  • Consider making an appointment at the International Adoption Clinic
  • Schedule a developmental assessment with the Early Intervention organization in your area (depending on the age of your kiddo). Most cleft kiddos qualify for speech therapy (in home until age 3 and at school after age 3)
  • Begin speech therapy (state-funded &/or private).
  • Become an advocate and teacher to your child – you are their speech therapist, learn the ropes
  • Watch “Baby Signing Times” (or similar) videos with your kids – helps to ease frustration and can aid in language development (it did for us)
  • Focus on attachment with your child
  • Leverage your village and resource when it gets stressful
  • Ensure self-care
  • Enjoy every moment
  • Build your kiddos library

Here is a great list of cleft book and videos for children: Cleft Books & Videos for Children

Sandy Schwedt