What I want you to know about parenting a child with special needs

In April, I went to visit my sister Grace who lives in Haiti.  She has lived there for several years, and this is my first time visiting.  It was very exciting.  She works for Haiti Hospital Appeal, a UK-based organization providing medical care and community support in Haiti.  They have a hospital, a rehab center for adults with spinal cord injuries, a respite center to support families of children with special needs, and much, much more.   I went with two female residents from my former residency program and a female pediatrics attending. In addition to spending some much-needed quality time with mi hermana, the group prepared some educational topics for different groups of nursing students, respite providers, and community health workers.   Most of these were very doctor-y about breastfeeding, developmental milestones, newborn care, prenatal care, and recognizing child physical and sexual abuse.  It was a blast, because educating women is pretty much my favorite thing to do in life.  The trip to Haiti and a description of the beautiful development happening at HHA would be a whole different blog altogether.  But one of the non-doctery things the volunteer coordinator (shout out to Natasha) suggested for me was a talk for the respite providers about what it is like to be a mom (or mum because she's British and cute like that) of a child with special needs.  Although I have been blogging for quite some time, I have never actually spoken publicly about any of this.  I find writing a much easier way of expressing these things, and, besides, I am a bit concerned I might dissolve into a puddle on the floor.  But I agreed to talk about it.  I talked to some other mom friends, and we came up with these.

Proof that the Deal sisters (and Chris) were together in Haiti.

1.) We have experienced loss, the loss of normalcy and of the child we thought we would have.  We will likely mourn.  This is normal.  And it does not mean we do not love our child.

2.) We worry often.  Take the worry that a parent of a typically developing mother experiences and multiply it by one hundred.  We worry about their health, we worry we are not doing enough to help them, we worry people will make fun of them for being different, and we worry we will die and leave them in someone else's care.

3.) We are exceptionally sensitive to judgement.  This one might just be me, but please try not to do it.  What a therapist, a medical professional, or a respite provider can do for an hour a week or for a couple of days may not be sustainable for our family long term.  We cannot do therapy every second of every day.  We get tired.  Our child is tired.  And every child deserves time when they play freely without restriction or correction.  Thank you for understanding this.

4.)  For those in-home therapists/providers, you are entering our home.  This is a sacred and vulnerable place.  We can clean up for guests.  We cannot clean up for you every day of the week.  You see us in pajamas.  You see our dirty dishes.  You see our tired faces.  Thank you for treating this with respect.

5.) We usually know our child better than anyone else.  Especially when children are non-verbal, we learn to pick up on non-verbal cues that others may not.  Listen to us when we say something is wrong.  We are usually right.

6.) We are tired.  We stay up late, get up early, and squeeze therapy in whenever we can.  There are therapy sessions, doctors appointments, tube feeds, medications, and the activities of daily living that often require more supervision.  Every parent of a newborn experiences a period of time where their child is completely and totally dependent on them for transportation, feeding, and diaper changes.  But when your child has long since been potty trained and learned to walk and feed themselves, we often lag behind.

7.) We desire so much to be included.  Sometimes it can feel isolating.  Try to draw us in.  Our hearts burst open into a million happy pieces to see our children playing with their typically developing peers.  We long for as much love, friendship, fun, and normal happiness that is possible for our family.  We want our children to play baseball, attend church, sing to Bruno Mars, eat Chick-fil-a, and have sleepovers with friends.  Anything you can do to help with this is appreciated.

8.) We love our kids.  I think this should go without saying, but I am going to say it anyways.

9.) Everyone is good at something.  Our children are no exception.  This means we hope that you accept them for who they are but also expect them to learn, grow, and contribute.  They need discipline just like other children, because they can learn to behave.  They need to be challenged, because only with challenges and high expectations will they succeed.  People with disabilities are doing amazing things in the world right now, things that years ago were not thought to be possible.  They are writers, poets, athletes, and teachers.  Do not limit them.  We don't.  Have high expectations and see what happens.  You might just be surprised.

10.) Do not feel sorry for us.  Our lives can be hard and are likely not what we expected, but our kids are rock stars.   We experience extreme emotions of both disappointment but also of joy.  I often think that those who love someone with Down syndrome know a great secret.  Those of you who are in this club know what I mean.  Those of you who are not are welcome any time.

I am definitely not an expert on special needs and am aware that every child and family is different.  I am sure these do not apply to everyone, but they are some of the common threads from my family and others I know affected by special needs.  I actually never got around to giving this particularly educational session while in Haiti, but it did allow me time to reflect on what I would want you, my family, friends, therapists, and medical providers to know about what it is like.

Thanks for reading.  Fellow moms, anything you would add?

Willow update: We got glasses just in case she wasn't cute enough already.  We have taken our first beach trip of the year as evidenced by the pictures.  We love, love, love the beach without a feeding tube.  We still are not walking, but we are working hard and staying hopeful.  She likes reading (especially the Big Red Barn, which might be the worst childrens book ever written), going for walks around the neighborhood, pulling hair, and, as always, dancing and music.