Friday, August 23, 2013

The Things I Wish I Had Time to Explain....

On more occasions that I can count, I have been given unsolicited parenting advice.

*Sometimes it's very direct.  "You know that your child is way too big to be in a stroller, right?"

*Sometimes it's less direct.  "I just took one of your french fries.  Get over it.  You need to learn to share."  

*Sometimes it's from complete strangers.  "Does she belong to you?  She shouldn't be touching people.  Have you ever told her not to touch people?  Tell her not to touch people."   

*Sometimes it's from friends and family.  "She's not eating any vegetables?  Don't you make her eat vegetables?"

*Sometimes it's from doctors.  "You need to set limits.  This is cute now but won't be later.  Kids with Down syndrome still need boundaries."

I sometimes wish I had time to stop and explain a few things to these well-meaning people.

Here's the thing:  All of those issues are valid.  She shouldn't hit or touch.  She should share.  She should eat vegetables.  She needs limits.  She is taller than the stroller.  These people are well meaning and usually right.

Here's the other thing:  I don't have it all together.  I don't know everything about parenting a 5-year-old with Down syndrome.  I regularly seek advice from others:  other DS moms, friends with behavioral experience, other single moms.  I'm pretty good at managing behavior in the classroom but parenting is so different.

Here's the BIG thing:  My child has issues.  She is not a typical child.  She is not a typical 5-year-old with Down syndrome.  She is a child who spent the first 4 1/2 years of her life in an institutional setting who is still learning English and also has a disability.  She may seem like she's completely adjusted and doing well.  Her transition has been amazing and she is adjusting so well but there are underlying issues the result from the first 4 1/2 years of her life.  They aren't major issues like some kids face.  They are hard to see but they are very real and they make parenting her different.

When you start the adoption process, you are required to do some training and to read some books. I took an online course about adopting an older child.  I remember being shocked that my 3-year-old (at the time) was considered an older child.  I now know why.  My child spent 4 1/2 years of her life in multiple settings.  They were good places but she was never parented and most likely got very little 1:1 attention.  There are some results of that they we will continue to deal with into her future.

These are the things that I wish I could explain to people when they give me unsolicited parenting advice:

*My child has a lot to learn.  
Sara has come so far and learned so much.  I don't think she left the orphanage much so she doesn't have any concept of social norms or appropriate public behavior.  She's matured so much.  I can now run into the gas station or drug store with her for a few things and not have to strap her into a stroller.  She knows (but doesn't always like) that she has to hold my hand in a parking lot or on the street.  There are so many rules and social norms to learn.  I can't teach them all at once.  We work on major issues that come up.  The more minor stuff is going to take her a while to learn.  When she steals fries from a random child in Portillos, I make sure she knows that's not ok.  Some of the other things she does are not ok but not as urgent.

*My child has issues with food.  
No little child likes to share food but Sara's issues go beyond this.  Emotionally, at this point, she can not share food.  If food is placed in front of her, it is hers.  She is willing to share food with me if I divide it before placing it in front of her.  Once it's in front of her, it's off limits.  If her ice cream cones is melting and needs to be licked, that's just too bad.

If you take her french fry, she WILL melt down.  It's not because she doesn't want to share.  She will gladly take two lollipops at the doctors office and give one to me.  She will not, however, let me touch hers.  She even has a hard time handing me things to be opened.  She does not want to let food out of her hands.

I don't know how food was handled in her orphanage.  She wasn't growing much.  Maybe she didn't get quite enough.  Maybe she had to defend her food from other kids.  Maybe she got in trouble for taking other's food.  I'm not sure.  But I do know, that she is very protective of her food.  Someday, I may choose to work on sharing food with her.  Right now, leave her fries alone!

*My child thinks everyone is her friend.  
When a child lives in an orphanage setting, they "know" everyone.  Staff may come and go but everyone there is "safe."  They can talk to anyone they meet and ask everyone for help.  Sara doesn't know that strangers exist.  Yes.  She will touch and hug everyone she meets.  No.  It's not appropriate.  It's something we are working on.

*My child hits.  
I don't think that this is entire the result of orphanage life.  Some of it is due to her limited verbal communication skills and her developmental stage.  This is probably my main focus right now and something she is doing so much better in.  She used to bite when she didn't her way.  She hasn't done that in a long time but she will hit or slap me if she's overwhelmed in a situation or if she doesn't get her way.  This is not acceptable behavior and my reaction to it is consistent based on her reason for hitting.  I think when people see a 5-year-old hitting, they assume the parent has allowed them to hit for 5 years.   Not the case in our situation.

*My child needs to be carried.
Sara has grown 3 inches and gained 9 lbs since January.  She is not the tiny little toddler I met 8 months ago.  Carrying her is getting more difficult every day but I still do it.  I realize that it probably looks ridiculous but I think it's so important for bonding.   I'm sure she wasn't carried much as a young child.  (Developmentally, she still is pretty young.)   Her stamina has greatly improved but she doesn't always want to walk, even when she physically can.  She's learning that she can rely on her mother to meet her physical and emotional needs. So, as long as I can and as long as she needs me to, I will carry her.

*My child is still learning English.
Sara understands a lot of English but she pretends to understand more than she really does.  She will answer yep or no to any question you ask, even if she doesn't know what you said.  It takes years to master a language and speech is definitely Sara's biggest struggle.  Sometimes when she doesn't listen or obey, it's because she just doesn't understand.  She really is a good kid and almost always wants to do the right thing.  I will switch to Spanish if I really want to her to understand something.  She's not being defiant.  She's just confused.

*My child is learning about limits.
Sara is learning all about limits and consistency.  When you are being parented by a staff of people, it's hard for them to be consistent.  When you only have one parent, it becomes much easier.  (Not that I'm as consistent as I would like to be but one person has to be more consistent that 10 or 20.)  Sara is responding well to limits and rules.  There are just so many rules to learn!  She can't be expected to learn them all at once!

*My child is experiencing everything for the first time.  
Pretty much every experience right now is new for Sara.  Birthday parties, parades, picnics, restaurants, parks.  They are all new.  She doesn't know how to act in a situation because she's never been in it.  There are lots of stories of adults doing offensive things in other countries because they didn't know the social norms.  Imagine how many obnoxious situations you could get into in Africa or the Middle East and we're adults that can read social cues!

I've thought about getting a shirt made that says:  "It's only been 6 months.  You should see where we started!  Cut me some slack!"  Maybe I'll just get cards made up with the blog address instead and hand those out.....


  1. Great post Natalie! I can relate to so much of that. Elijah has many of the same "issues" and is quite a few years younger than his estimated chronological age which kind of complicates reactions. One of the things I've learned over the years from my own kids with invisible "issues" and from my own rash judgements is that we never know what's going on with a kid. A kid may have no outside markers of any sort of disability but we have no idea what challanges that child is dealing with....FAS, Autism, Aspergers, Sensory processing issues, trauma, attachment disorders. Those are things that are fairly undetectable to the untrained eye...but yet can make life as a parent VERY challenging. We really have no idea what's going on with kids, or what sort of hellish day that parent is pretty much everyone needs to keep their rash judgements to themselves. Parents of SN kids already know, are hyper aware, and understand what is "appropriate" socially...but every battle cannot be fought at once, and some will just plain not be people around them just need to adapt and tolerate. Ok...I'll end my rant now. You got me going. You are definitely not alone. Don't worry as the years go by you'll care less and less about what others'll have no pride left to protect. haha

  2. Thanks for sharing this, Natalie!! It was very helpful! We're in process of adopting two five year olds through RR, a boy with down syndrome and girl with hydrocephalus, so it was encouraging to learn more about what to expect and to see how you respond to it. :)

  3. Natalie, this is a great post.

    I think you should make cards to hand out (and put the link for this post on them!). :) Education is the key. So many people have good intentions, but they just don't understand.