Thursday, July 7, 2011

Mileage

I am just going to say up front--Sami this entry will drive you nuts. It's basically an entry that I need to do for myself and Les and no one will find it remotely interesting, unless they have adopted a cleft affected child from another country. You have all been warned...

We are approaching the one year mark in our relationship with Liam. July 27, 2010 is the day we met him in a government building in the middle of a bustling, sweltering Chinese city. Then we had to spend two more weeks in China before we could get home and start settling in. And I ~think~ alot of other families feel the same way we do, in that, you just can't get much done in the way of family growth in China. Because in China it's all about survival.

I was watching Liam play in the pool today and I was struck by how absolutely different he is. I was reminded of that boy we met and how it is so hard to find that particular little guy underneath the fella I see from day to day. And some days are still very rough with him and I wonder if I will ever have a boy that doesn't WAIL when things don't go his way, or if I will ever have a son that can look at me and verbally communicate with me or if he will just spend the rest of his life in diapers. And I know that I am being dramatic in those instances, I know that. I also know that a year with us is still only half of the time he had without us, without a family life, without a room of his own, a bed of his own, toys of his own. I also know that I am being dramatic because I can look at him and practically SEE the advances he makes each day. For instance, yesterday he learned 4 new signs and the words to go with them! I think that's pretty awesome!


Let me paint you a picture. A two year old boy that is physically right on--almost. The things he was behind on were things like socialization, interaction...Like he wold make excellent eye contact when he had a need that he wanted or needed filled but if WE wanted to talk to him he would turn his head, shift his eyes, close his eyes, try to charm us, or throw a fit--usually all of the above. He had these very quick and dramatic facial expressions that were his only means of communication so he relied on them heavily and let me tell you, he was an artist. We called him the Buddha of Displeasement. He could not entertain himself. He could not or would not follow even the simplest verbal command ( I am referring to him around the 5 month mark here). He refused to do anything and everything that would make him a functioning part of the family. I am not talking about ability here. I am talking about desire and motivation. All the time I thought, "He's not "angry"- so what's his deal?" Well, he was angry. Angry at us, at the world and he wanted no part of what we had to offer. He woke up crying and went to bed crying and most days he cried all day long. He would stand right in my face and yell and cry and throw himself on the floor. He would refuse to move his body a single millimeter to assist with diaper changes. He had to be fed every two hours for many, many weeks and when that abated he would still stuff his mouth to the point of choking with every meal. Have you ever witnessed how much food a kid with an open palate can get into their pie hole?! It's alot and he would do it in an instant when we looked away. He could not be trusted.


Les has been really frustrated because, due to circumstances out of our control, Liam has not had a single bit of professional speech therapy. But I have been thinking about it and I am NOT that upset because I honestly believe that he was not ready. He wasn't physically ready nor was he emotionally ready. It has been in just the past three months that he has had any inclination to try.



When Liam first came to us he had what I would call, "NO Oral Awareness" he didn't use his lips or his mouth for anything- it was all guttural vowel sounds. He must have throat muscles beyond belief because that's all he uses for sound. Even after being home and knowing the difference between open and closed in other things, he could not willingly open of close his mouth. He could not deliberately stick his tongue out and move it from side to side. He would never close his mouth at the end of a word. All of his sounds were those guttural vowel sounds, but not all the vowel sounds. Ahh, uhh, something that sounded like hulllah, aaa--you get the picture. And prior to his palate surgery he drooled constantly, soaking something like 6 to 8  bibs or shirts a day. I have heard that not all palate kids drool, but ours sure did. He could not blow or pucker.

Then we had surgery. And even though his mouth healed nicely he continued to drool. His surgery was Oct 12 and his drooling didn't completely stop until this Spring sometime. Now the level of drool slowly decreased as time went on but he still drooled quite a bit until then. He will still drool quite a bit if he has a stuffy nose. His left nostril is very small and narrowed with scar tissue- and when he is tired, sometimes he forgets to control his mouth but other than that he's pretty good now.
He used to have food come out of his nose. Man, was watermelon ever fun. But after he had complete closure with his palate, we rarely see anything come out of his nose and when we do it's either chocolate or tomato sauce. From what I have read, these foods are considered dilators and this is a common thing in palate kids. He ate watermelon for three days in a row this week and I never saw a bit come out of his nose.


His food hoarding issues have nearly resolved and now the only time we see him frantically packing something in, is when he's almost done and it's something he really likes or when he wants to finish one thing so he can have a second thing.


As far as his oral awareness and oral motor skills: he can blow now, not powerful but he can do it. He can pucker at will. He can stick his tongue out and move it from side to side. He's slow and clumsy but he can do it. He will close his mouth at the end of some of his"words". We have only the mmm sound as his consonant and he can do a puh sound but it's very weak and quiet and he has to work really hard. No s sound, no r sound, no b sound, his f's and h's he tries to do with his throat through clenched teeth. he can do all of the vowel sounds on command with the proper mouth shape- though e is still hard for him. And now when he tries to talk he does make a string of vowel sounds mixed with his old reliable guttural sounds. His word for Evah is like eh-something weird and guttural-ahhh. He can do a version of the L sound too. Sometimes I can get him to do a few consonant sounds with quick vowel sounds after it- but he doesn't quite get the blending yet. He tends to get all confused and his mouth in a tangle if we do too much, so I keep it light and simple and stop when he gets it right.



We are using signs with him and that has helped  tremendously. But he was VERY resistant to learn and he was very, very uninterested for quite some time. I was so desperate for him to try anything and he just WOULD NOT. Then, one day, he made up his mind to try and voila- a switch was thrown and now he signs quite a bit.
He knows the signs for: shoes, socks, shirt, milk, water, juice, soup, eggs, bread, drink, hungry, thirsty, please, up, out, in, down, sister, mama, papa, grandma, grandpa, cat, dog, fish, bird, bug, duck, rabbit, flower, car/truck, boat, bath/shower, brush teeth, all done, thank you, share, no and sorry. That's 40. You can not understand how those 40 words make it possible for this little guy to tell us things. Again this interest in and usage of signs is in the past three months.


He has a solid routine around bedtime and nap time now. And there is very little crying. He was moved into a toddler bed when we moved here and he liked to sneak out of bed and wander around the house for a bit but (knock on wood) we may have him trained out of that. He mostly goes to bed happy and easily unless we are at Grandma's or there is company at the house.
He can and does and likes to entertain himself. He has his own room and at least once or twice a day, he will retreat there to play quietly on his own. He will call for me periodically though. He still needs to know where I am.

He obeys us for the most part. He's not as good about that kind of thing as Ev, but I think even Toddler Jesus and 7 Year Old Jesus would have a hard time following rules like our Ev.  I think he (Liam, not Jesus) is still trying hard to learn all of the ins and outs of a family life. He was such a survivor and he did that through manipulation and pure stubbornness and single-mindedness so we have a while until we see that resolved. AND you know, personality comes into play. Also he's two.
He still gets really loud and put out when he is redirected or when he's in trouble. Lots of wailing and moaning. That sort of thing. B ut it happens maybe 5 times on a bad day now, so I can totally deal.


He's funny and fun loving. He likes to play, play, play. He knows that I am the Mama and he does slightly prefer me over the other two people in the house. He has always displayed kindness and empathy. He is huggable and lovable. In many ways these days, he's just a regular two year old boy that stole our hearts. And isn't that the most amazing thing?!?! To be "regular" after two years of life in institutionalized care?!


There. I wanted that all down so I could see how far he has come. I think he's done wonderfully and I am thankful for the progress I see each day. I have to think hard about the way things used to be.

1 comment:

  1. I wanted to let you know Ijust clicked on your blog from HKI. I read your post, and even though my little Maggie does not have a cleft, she has a back problem and was in the orphanage for almost four years of her life. We have had her for a year and a half, and I can realte with you on many of the issues, especially behavioral. She has come a long way, but unlike you guys, we actually had to seek out therapy for her issues. They are many. Anyway, i wanted to let you know that I could relate, and it was nice to hear that someone else has similar issues although different circumstances. My blog is SuzyQ chronicles come check it out if you would like!

    ReplyDelete