Saturday, April 8, 2017

Special Needs Parenting Preparation & New Challenges


Over the past ten years we've fostered children with various special needs including drug addicted babies going through withdrawals, toddlers and preschoolers with speech and motor delays requiring early intervention services and therapies, and children who, for a variety of reasons, had trouble regulating their emotions.

As foster parents we felt it was our job to provide all the nurturing, stimulation, and support we could in order for these babies and children to get "caught up" on their developmental milestones, learn to adjust, or, in the least, to help them feel that they were in a safe enough environment before any other changes could take place.  I have certainly come to understand that survival takes precedence over thriving- not just in a child's brain development but in the way I care for children who have special needs.*

After we had done our "job" with these children and they would be returned to live with their families or relatives, we could only hope and pray that their caregivers would continue with services or have the appropriate tools, if not support, to meet their children's needs.  In a few cases we've been able to keep in touch with our foster children and their families to see how they're doing but in most cases we have not been able to do so.

It's only been over the past couple of years that our role has changed from taking care of "other people's children" with special needs to becoming the full-time legal parents to not just one, but two children with special needs as we ended up adopting a sibling group of two of our former foster children.  These children are now our children, and as such, it has presented us with some new challenges.

"But They Look Just Fine"

I think that one of the hardest parts about being a parent to a child with special needs is when they look like "typical" children in their appearances. What I mean by that is that if you were to see someone in a wheelchair you would automatically know "They have an injury or disability- that's the reason they aren't walking and are using a wheelchair to get around."  Or if you were to see someone with down syndrome it would register with you, "I can tell by their facial features that they have down syndrome; that is the reason they are likely to be slower in their development and have some physical complications as well."  However, you can't necessarily tell if someone has a learning disability or mental illness just by looking at them.

Our youngest children aren't in wheelchairs, they don't have braces on their legs or G.I. tubes, nor do they exhibit the facial features of someone with down syndrome or some cases of fetal alcohol syndrome.  Yet, they have special needs- perhaps not severe special needs, mind you, but needs that definitely require extra understanding and attention.  Most people would never know this simply by looking at them.  However, after spending some time with them, a teacher (or other observant person who is familiar with normative child development) might notice some lags in their development and/or some slight disruptions in their behaviors.

For instance, just this week our three year old's teacher at church pulled me aside in the hall and said, in essence, "Your little girl can be overactive at times and has a hard time sitting still but I can sense her fragility and sweetness."  I immediately felt the need to apologize that I am not always able to lend an extra hand to sit with her as I have an older Sunday School class to teach, to which her teacher replied, "Don't worry- she's young and still learning!"  Good point.  After all, what 3 year old is automatically able to sit still on chairs for minutes at a time and listen to lessons and sing songs rather than playing with toys and having snacks and running around as they had previously done in the Nursery?  It's a hard adjustment and for some kids it is easier for others.

My little girl's teacher then said something very specific which caught my attention.  She continued, "I don't know what her story is . . . but I'm aware of her. (or "I'm glad to have her in class" or something like that.)  I started zoning out as soon as she said, "I don't know what her story is" because I began wondering Is she asking me for more information?  Or is she just trying to tell me, "Whatever is wrong- don't worry about it.  I've got this."  I wasn't sure and since we were just passing each other in the hall it wasn't an opportune time for me to say, "Pull up a chair and let me tell you all about it!"  Instead, I just smiled and said, "Thank you for your patience with her."  which I genuinely meant and I just left it at that.

That experience brought up a lot of tender feelings inside of me, as well as a challenge I currently face and will likely face in the future as well:  It's been challenging to know how much of our children's past histories we should share with others and it begs the question: What are the pros and cons of sharing my children's personal histories/special needs with others?


-Knowing their backgrounds can be helpful for teachers or caregivers of my children to understand where they're coming from.

-There may be someone else familiar with special needs (visible of invisible) who can relate.

-In cases where people are not necessarily familiar with the issues, it's a good opportunity to educate or advocate for special needs and/or foster care.


-People can be judgmental.  On that note . . .

- I don't like labels.  My children are my children, first and foremost.  They may be children who happen to be adopted or children who have been in the foster care system or children who have special needs but, above all, they are my children.

-Although labels serve the convenience of being able to explain things in a few short words, they can often create even more judgments and stereotypes.  For example, even if I were to use the phrase "drug exposed in utero" rather than "drug baby" or "child who was placed into foster care" rather than "foster child" there are bound to be some strong assumptions and connotations surrounding those words.  And let's face it, they're not often pleasant connotations because they aren't pleasant scenarios.

-I want to be respectful of my child's history as their history and story to tell.  

This one is tricky for two reasons:

1) My children's histories have become a part of MY story as well.
2) My youngest children are too young to even fully understand or articulate their histories for themselves.

With that background, I am going to err on the side of sharing my perspective of parenting a child with special needs (rather than withholding my experiences) in the hope that it can bring awareness or help someone out who finds themselves in a similar situation.

* [The works of the late Dr. Karyn Purvis, Dr. Dan Siegel, and Dr.s John & Julia Gottman have been INDISPENSABLE in helping me understand how to effectively care for children coming from backgrounds of trauma!]

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