The risk of isolation

"We'd love for you all to come over for dinner!  The kids can all play in the basement while we visit!"

 

"Would you like to meet us at the park?"

 

"You are invited to my child's birthday party!  It is at 6:00pm.  She'll have a blast!"

 

I'm sure you have had those invites.  I've had them and accepted them with great joy over and over again in my 13 years of parenting.  I love fun!  I enjoy fellowship with others.  I like time with my friends to laugh and have fun. 

Now let me tell you why each of those scenario's doesn't work for our family anymore.  My girls absolutely can not be left alone in another person's house.  Oksana can manage OK in some houses but she still gets into things she shouldn't, knocks things over because of her balance issues, and trips over things, often hurting herself and/or the children around her.  I don't leave Anya unattended in my own house where I have it appropriately childproofed for a 5 year old with DS.  There is no way at all I can leave her unattended in someone else's house.  I learned from experience that Larry and I have no fun at all in these situations and we leave far more frustrated than refreshed.  Oh and don't forget that now Anya is totally overstimulated and will give us negative behaviors for a couple of hours following our "fun" get together.

So what about the park?  Well let me tell you about that.  I once went to a park outing with a bunch of homeschool moms.  I was SO excited for the chance to visit with these women.  What happened is that they sat together under a pavilion and talked while their kids played.  I ended up on the playground with their kids because Oksana can not be left in a park to navigate the equipment alone.  Now that I have Anya, parks will not be happening at all without Larry.  Anya will end up in the parking lot, or sitting on a stranger's lap, while I am taking the 20 minutes necessary to help Oksana maneuver the slide while a gaggle of children wait behind her. 

Birthday parties?  Certainly every kid loves a birthday party.  We now have to say no to every single evening birthday party invitation.  Trust me, we tried it, and every single one ended in disaster.  Oksana needs her sleep and when we keep her up late and then at the same time totally and completely overstimulate her it ends in a major melt down.

I don't say this to complain.  I love my life.  There is nothing I have ever wanted more than to parent all 4 of my children regardless of their abilities or impact on my social life.  I say this to help others understand, and to say that living with a family like this puts us at great risk of isolation.  I am involved in a number of online communities and this is a theme I see come up over and over again.  Families are isolated.  They are lonely.  People don't understand them.  I can relate....and I'm not sure what to do about it.

One solution is to have people to our house.  That is certainly an option.  Can I be honest about this?  It takes a great deal of intention for me to do this.  I know full well that while having people over is the best route for our girls, it is also the hardest route for me.  Now I need to clean my house (I'm sorry if you think that is crazy but I can not comfortably have people over when they have to make a path to get through my living room), I need to consider what I will feed them (did you know I hate cooking?), and I need to give them the speech about what to do if one of my children tries to hug them, sit in their lap, etc.  Then I have to give Oksana the lecture about giving people personal space, not using them to lean on, etc.  Can you see why I'm not on the phone inviting people over every weekend?

We do have other options.  One is that Clayton is 13 and since the girls go to bed so early we can put them to bed and then meet up with people.  I'm not saying we are out of options, simply trying to show that living with kids with special needs can easily put you on a slippery slope to isolation.  Does anyone else feel themselves slipping away?

 



Life through Oksana's eyes

Oksana got a camera for Christmas. I was skeptical but then I saw an ad with a great camera for kids. It was big, chunky, sturdy, and it took pictures and videos. That has become the favorite gift of the year. For weeks she carried it everywhere and took pictures. The pictures are so funny because they give such an interesting perspective. First of all her balance is compromised so she can't stand still and shoot photos. On top of that she doesn't have the best vision and this camera doesn't exactly have an nice big clear screen.   That leads to a lot of black pictures because she has the camera practically on top of the object!  I also find it fascinating that the pictures that we would throw away are the ones that she likes best!  Add all that together and you get a very interesting glimpse of life through Oksana's eyes in the pictures on her camera. Here is a sampling:

 

Daisies

Today I got a wonderful new perspective on my journey of attachment with Oksana.  A year ago I wrote a post where I said that before adopting Oksana I had created my own fairy tale adoption story.  That fairy tale included us running toward each other in slow motion in a field of daisies and embracing.  She would have a huge smile on her face because she finally had a mama!  Well if you've followed this blog long you know that there were no daisies in my field.

Today I was sharing this story with a friend and she commented on the fact that the daisies must come eventually.  I will admit that for a moment I had to think about that.  Have we had our field of daisies?  2 1/2 years later things can still be hard.  A year ago I had no idea that Oksana would be diagnosed with Reactive Attachment Disorder.  That definitely explains a lot of the reason that we've struggled so much.  And then it occurred to me.....we are planting our field of daisies one daisy at a time. 

When we laugh together...really geniunely laugh and enjoy each other.....daisy

 

When she lets me kiss her goodnight without pushing me away.....daisy

 

When she hugs me...just because she wants to (this is a rare, rare occasion)....daisy

 

When she said "I love you" for the first time a couple of weeks ago while she was getting out of the car to go to school.  It had never happened before and hasn't happened again since.....daisy

 

What I realized is that the field may have been empty when we met, and the field may still be sparse today, but some day I may look back and realize that we are running through a field of daisies.

 

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

 

Catching up

I hope you all had a great Christmas.  Ours was....interesting.  Good overall, but interesting none the less.  Christmas Eve is always spent at church and with my family.  All 4 kids went to church with me.  Larry was in the band so I was a bit nervous about that.  They did fabulous.  Anya pooped right before service ended and then I realized I only had 4 wipes with me which was not nearly going to take care of the problem so I did the best I could and then rushed my stinky child home for a bath!  After that my family arrived and as is tradition, the food was out.  Unfortunately none of it was gluten free.  As I scrambled to find an alternative I could not take my eye off of Anya for one second or she would snatch food and have it shoved in her mouth faster than I could blink.  Larry was still gone so I was on my own.  That felt like a very frantic time for me and it was hard for me to relax.  When I finally got her fed and the food started to get put up it was much better and we were able to enjoy our evening.  Anya got the drift of opening presents fast but she wanted to open one and then play with it for 20 minutes before she opened the next one!  Oksana was a bundle of excitement and joy the whole night.  She was so excited for every single gift!  The boys had a blast with their cousin who they don't see much at all and got some nice gifts too.

We always spend Christmas morning at home and then head over to Larry's parent's house.  No food issues there, which was a big relief but we are learning that a whole day out of our house is too much for Anya.  When she is overstimulated she gets mean.  This is the third time we've seen the change in her so we finally put two and two together and made the connection.  When she gets mean it can look like scratching us over and over again or just having a major attitude which is really unlike her.  One time on Christmas she was playing a drum.  I cheered for her and normally she would get very excited, cheer for herself, and drum away.  This time she gave me the most evil look and then covered her face so I couldn't look at her.  Yep, time to go home!

Oksana was a complete joy through Christmas and then started to crash and burn about a day later.  The excitement of Christmas kept her afloat and then the overstimulation, together with the fact that she can't handle the lack of structure that the school break brings, led to a little kid with a big attitude.  She's still struggling but only for short periods of time during the day.

Here are some pictures of our Christmas and also from our first snow.  It wasn't much but my kids were thrilled.  It was Anya's first time in the snow and after some initial apprehension she loved it! 

Christmas Eve before church.

 

I love a gift that makes him use his brain :)

Yes, dear that is a nice toy but you have lots of other presents to open!

Christmas morning (Anya slept in).

This drum was the perfect present for her.  She LOVES drums!

This was the drum 5 minutes after opening it!  Oh well!  My mother in law had an old drum set that Clayton played on when he was little so we found her a drum anyway and she hit it ALL DAY!

Princesses were the theme of the year for Oksana!

 

Loving the snow!

 

She waited all day for enough snow to play!

 

This started as a snowman head that Clayton was protecting in the swing and then it evolved into our 5th child :).

 

The snow baby creators!

 

The snow baby took a fatal slide down the slide!

 

It was still snowing while we were out so she would look up at the snow and then say "OWWWW" when she felt a snowflake fall in her eye :)!