Wednesday, January 8, 2014

Addison and the Baby

Those of you who follow me because of our connection in the special needs community no doubt have noticed that it's been a long time since I have mentioned Down syndrome here on the blog. "Unsubscribe!" may be your battle cry, and if so- fine. I have always said that this blog is for me and what I need to write rather than what I feel that everyone would want to read. I am not in the market to change that now. (I need my therapist too much to let it go!)

But today I need to break my silence and talk about Down syndrome.

My avoidance of the subject has not been deliberate. It simply has not been forefront in our lives. Getting ready for new baby, going through some 2 year old issues with Carter's bed transition, welcoming new baby, adjusting to being a new family of 5- we have been busy.

And parenting a child with Down syndrome through all of this has been interesting. There are moments that are incredibly difficult. There are moments that are blissfully amazing. And then there are thousands of moments in-between that just....are.

So many people keep asking me "How is Addison doing with the new baby?" I can only assume that they are picturing Carter constantly in a time out with his toddler sized bat just to keep him away from practicing ball with the new baby- because the questions are rarely about him. The questions are almost always about Addison and the new baby. (btw...thanks Aunt Andria for buying him the bat. Can't wait until I can start buying toddler sized explosives for your kids. (-:)

When the baby first came home from the hospital, I was stressed out about how little I could trust her. She didn't deliberately want to cause him harm (unlike when Carter was a baby and she was still just a baby herself). She was just extremely uncoordinated around him. Placing her hand on his belly to push herself up from a sitting to standing position, walking around his blanket-tripping- and falling on him, flipping his bouncy seat as she tried to figure out what this thing was (not while he was in it thank goodness), throwing books down around him for him to read while he was chilling in the pack 'n play- she was just extremely curious with no "careful" filter in that curiosity.

As time has moved on- her trustworthiness has gone up. Not 100%, but upper 80s for sure. She has been spending lots of time just sitting next to the baby, watching him. She'll lay on the blanket next to him while he has tummy time, quietly staring into his face. She'll give him gentle back pats (unlike Carter's back pats which are more like a "remove stuck food from your throat to help you stop choking" type of pats). She'll readjust his blanket (although sometimes she'll put the blanket over his head). Several times Eli has been crying, and before I could get to him, she did first. She'll just sit next to him, staring at him, perhaps giving him some gentle pats. 9 times out of 10 he'll stop crying and just stare back at her.

She wants to hold him a lot- and very intently stares down at him and "holds" (with assistance) her baby with such love.

She is fascinated with all of his stuff. The bouncy chair and his rock 'n play make the BEST reading nooks for her. She'll climb in with a book, settle in under his still-warm blanket, and spend time just chilling in his digs. She says "Baby" a lot. She won't say "Eli", but she finally stopped trying to give my belly a kiss after a few explanations of the baby no longer being there- he is here with us now!
It has been so sweet to see her mother him, and I am already sensing a special connection between Eli and Addison. I hope they will be best friends.

But in the same breath- there have been times in this whole transition process that I have been extremely frustrated with the fact that my oldest has Down syndrome.

She will be 4 in less than a month. I am not the first person in the world to have a 4 year old, 2 year old, and newborn. Far from it, actually. I know many people with this exact same spacing. But the fact that my 4 year old is behind my 2 year old developmentally in a lot of areas has added in a lot of extra stress.

The fact that I have 3 in diapers, her stubbornness in pretending not to understand basic instructions (she does), her fascination with taking off her diaper during nap time and relieving herself all over her room (every.single.day), her refusal to walk on snow (it's almost impossible to carry a 30 pound toddler and an infant seat while holding Carter's hand too), her inability to communicate a lot of basic needs and wants- turning to incessant whining to get her point across-

there have been many times while juggling my newborn on top of dealing with these issues with Addison when I have thought "It shouldn't be THIS hard. She is almost 4. WHY do I still have to deal with some of these things with a FOUR YEAR OLD."

she takes advantage of baby nursing time to do stuff like this:
in the cup: cereal. In the spray can: jock itch spray. Um....
the storage location of these items have since been changed...now that she can climb to the tallest and highest cabinet shelves and help herself...

And the thing is- when Down syndrome all of a sudden becomes forefront in my mind in a negative way, I know that this isn't something that she will grow out of- or somehow be cured of- or something that will just disappear if I don't think about it.

My daughter has Down syndrome. My four year old daughter has Down syndrome. My oldest- the one who I should be able to rely on the most to "help" with the new baby (or at least be able to do a few more things for herself- like walk to the car) has significant developmental delays requiring much more care, help, and patience than a typically developing peer would require.

This isn't new information to me. But when I forget about Down syndrome because of how busy we are- when I see how well she's doing in so many areas- when I am so busy loving my little family that I forget to think about the labels in our lives- a reminder is a bit like a slap in the face. I forget that anything is different about us- about her, until these reminders.

Last night Aaron wasn't home, and I was in charge of getting them all in bed by myself. Carter went down pretty well (at least quietly), and Eli immediately fell fast asleep. Addison? After a full day of play, attention, and good food- she sat at the door of her room and just whined. Whined and whined and whined. Every time I asked her what was wrong- she just whined more. No words (except to ask for Daddy once). No explanation. Just a madness inducing whine for an hour and a half.

I was frustrated. I went in there multiple times to talk to her and figure out what she needed. Nothing.

Finally she seemed to be falling asleep at her door. I picked up her little frame and placed her in her bed. She looked ready to whine some more and get back out of bed, when I picked up her blanket. I waved the blanket over her body- "gooshing" the blanket (as Aaron calls it). The blanket rose and fell over her several times, and for the first time that night- she relaxed. The whining stop, and in its place came a little giggle. The giggle widened into a full body laugh which continued as long as I gooshed her sheets. All it took was a few seconds of this laughter to erase the memory of the past hour and a half of whining.

Her laughter was a much needed reminder. Yes- there are moments that are hard- perhaps stinging a bit more than the "hards" we have with Carter. But life with Addison is extremely worth it all. She is an amazing, smart, person that truly is growing and learning so much every day. Her frustration most likely equals mine in this whole process. Her smarts are so far ahead of what she can communicate in words. I guess that would make me turn to whining too.

We are in this weird transition time- adding a new person to our family. (Although- seriously Eli is the best baby in the world. God knew we needed an "easy" baby this time around.)

When transition and hard times roll around, the bumps already in our path seem to increase in their intensity. When we balance back out to normal life, the sting of having a 4 year old function less than a 2 year old becomes one of those things that just...is...instead of something that makes me overwhelmed to leave my house with all three.

So to answer the question "How is Addison doing with the new baby"- she is doing great. She loves him. She is fascinated by him. She is acting out a bit more as she adjusts to another brother in her crew. She is thrilled that she still has her school time because it is HER thing- her time with her aide- her learning time without being weighed down by little brothers.

And Eli? He seems to really love Addison. Enough to attempt to pull her hair already, anyway...


Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.

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