Connor's Pierre Robin is a syndrome where many of the kids with this end up with 20 or more surgeries when they're especially affected. That would be him. To date, he's at 14. We've had a nice few years mostly problem free, his scars are minimum and his speech is amazing for having been born with literally no cleft palate. As of lately, swallowing is slowly becoming a problem. Mostly swallowing meats or anything especially chewy. Instead of the swallow study that directs massive amounts of radiation towards his head, we're opting to have a feeding evaluation where an expert watches him and sees if he could simply revisit some swallow therapy. He's also got a smaller upper jaw and a ton of teeth that will cause overcrowding and possible ripping of his upper palate...he's slotted for x-rays and decisions will be made from there. There is a possibility of him simply using a nighttime head gear...this is what we're hoping for and we won't worry until the day they say otherwise. Why? Because this is the card we...he's been dealt. ...he's also got an umbilical hernia...we simply watch it and as long as there is no major pain or problem it's not going to be touched unless he's slotted for a surgery for something else. He's also got some crazy old-school stitch from his g-tube repair that somehow has poked out of his stomach and occasionally gets infected...we watch it until the day he'll get that hernia repaired. He's also got ear drums that are shaped the opposite of the way they're supposed to go but to date, fluid has stayed away and we get him tested every 6 months or wait for him to complain of pain or notice hearing issues. .......he's a tough kiddo and one day, he's going to really understand how he's a complete, amazing wonder. .......the school has wanted him tested because of delays but we asked for them to wait a year since really, of course he's had delays. This past semester of school, he seems to finally have really been picking up learning sounds.
Sawyer has Autism. He's not high functioning and he's not low functioning. We're kind of past hating these terms. He's totally verbal and a bit quirky. We've had a few school issues and he's had a few personal issues that we were afraid meant he has been regressing. ......Sawyer has had interventions since he was 2. ABA therapy, speech, social groups, occupational therapy, a psychologist, now a psychiatrist...... most of it has felt like wasted money. I'm not even kidding. The bulk of his therapies have always felt if there was some master autism plan and he just didn't fit in it.
.........yesterday was a rough day. We finally got to see what our pediatrician calls the wonderful, triple threat (pediatrician, childhood psychiatrist, plus autism expert) and yes, he was great. He was also the bastard that made me cry and feel a bit hopeless...and the guy who has me up at 3 ready to take care of business. I'm going to make my own damn social group for Sawyer. It'll be called the Local Social. I'll figure out how to make this a real thing because the group I was guided to yesterday has a wait of 8 to 12 months and boy, it's going to be crazy expensive once we get in there and who knows if it'll even help him....also, the last place we went to...the place that has been THE place...was ridiculous for our needs. It was a ton of money and for higher functioning kids. I had to actually ask for a print out of what was actually discussed for an hour and a half because I was thoroughly confused when I'd ask Sawyer what they talked about......plus, the group leader would come out letting me know how Sawyer went off topic and didn't seem to understand what they were aiming for. HMMMMM....
Sawyer has a moderate language disorder. Two years ago the University of Utah tested him and the bulk of his issues were with expressing himself...or expressive language disorder. Recently, we went back for the same testing and his issues are showing with both what he understands and what he expresses....or receptive/expressive language disorder. Any basic idiot that sits and pays attention to Sawyer will know there is something going on ....the experts are needed to pinpoint things....but us basic laypeople can get a clue that he's got social and communication issues.
Sawyer's school year hasn't been all that easy. He's smart to the point of he can read well for first grade...really well. He's been pretty good with spelling and has a great capacity for memorizing.....but........BUT, these language issues very much come into play when he doesn't always recall what he's reading or understand what he's memorizing. His grades have slowly declined as work has gotten harder and asked more of comprehension in the Language Arts...it's not really surprising when you take two seconds to think about it. ....Math is also starting to get harder for him.
The great triple threat doctor asked me yesterday if I could ask him one question, what would it be. After circling subjects, feeling enlightened, feeling puffed up with compliments of my great parenting and doing the best I can....I finally built up the courage to ask when was this going to get easier and was Sawyer going to be just fine by 18. I over spoke him and said that I've read so much and it seems that it should get easier....he chuckled...actually smiled with a little laugh and asked me what on earth was I reading. ......ummmm...can you feel the deflation and tears??? He said no, it was highly doubtful that things would get easier. Sawyer is not necessarily high functioning just because he can talk. He has anxiety and that tends to get worse the more he misunderstands or feels misunderstood. He gets incredibly quirky and visibly 'different' when he's anxious...he looks off and walks a bit different and his hands go up....he's either excited or a little fearful when you see this...he sometimes will meow or growl. Because home is his safe place, he can get incomprehensible and yell if he's really upset. .......apparently, as you age, people don't just smile that you said something sort of off and slightly 'weird'. He's of that autism that is totally off socially and his communication skills are perplexing to say the least. He's not got savant skills (as of yet) and he's not making the more obvious low functioning noises or gestures......he's the middle guy...the one you'll just wonder why he's acting and talking a certain way. This incredible doctor and kind man said that most kiddos like Sawyer enter a sort of vicious circle of anxieties all based on his communication faults.....communication and socializing sort of go hand in hand. The kids that get 'easier'...that become more 'typical'....that have a tough time but can integrate....they tend to learn how to communicate and they learn how to be social...... learning these things can become second nature just as if you practice anything day in and day out. ....but most of these 'higher functioning' kids, do not have a lower capacity for learning. They tend to have much better communication skills.....and this isn't to say they didn't work like crazy to get there........but the point is, they got there and Sawyer has not. Sawyer isn't regressing...this is simply his autism. ....and bluntly, Sawyer's sort of alone, already...in 1st grade!, at recess. The good doctor said you can learn most of what you need to know just by watching them during recess. Who knew....
Fortunately for me, deep down, I think I already knew the answers to my burning questions because this past weekend I took to our local community facebook page and asked if anyone was interested in forming a social group this summer due to a personal need and really, the expense. Surprisingly, or maybe not so, there are already 12 people interested and I'm betting the number goes up.
I was really upset with that doctor yesterday. I came home and cried like I haven't in a long time. Checking mail yesterday, a friend sent a gift that really was a well timed blessing...and then we also had a letter saying that our beloved surgeon that's been with Connor from the beginning was leaving Utah to head the Vanderbilt University Cleft/Craniofacial team. .......man, can we just say yesterday was rough. .......Mikey came home and I cried some more. I don't recall crying when Sawyer was professed as having autism...I suppose because we already knew. Being told that your baby...and they all become your babies in these moments.....is not going to fly the coop in the way you think, is a low moment. ........but thank God, I'm me. I've got faults aplenty but I tend to not stay down too long.
The great triple threat doctor gave us the number to a place that'll do in-school ABA and also evaluate what's happening at school. He also gave us a number for a new social group and when I asked him what he thought of me doing my own social group, he gave his blessing and said he felt guilty for not thinking of that himself (his son happens to be a non-verbal child with autism and down syndrome). He said even if the children do not necessarily stick with the curriculum (that I was given by one of Sawyer's therapist)...the point was to have him socializing. ......so to keep you up, of course our insurance doesn't cover either places he gave us and the social group has an 8-12 month waiting list. We're not too worried because with a call this morning, I should be able to get letters that'll satisfy insurance and I'm going to get to work on forming my own social group. Another mother messaged that she was willing to help and I figure I'll call our community 'building' and see if they can offer up a room or two once a week this summer for a few hours. I can't seem to get it together to write a book but I can maybe do a flyer for a social group...and I like the sound of the Local Social. We're probably not the only people needing the benefit of something like this.
.......I'm also going to call our state parent center and finally utilize their services. I'm thinking Sawyer's IEP (individual education plan) needs looked over with a fine tooth comb and I need to know exactly what he's doing when he's at resource class and if he is getting the services he's entitled to.
Okay.....that's the end of my typing...here's a few pics. Peace...Love...Joy....always. Happy almost Easter!
and to add a quick P.S. ....please don't berate the doctor because his message was conveyed gently and kindly despite that initial chuckle...and it didn't feel hopeless though that was an initial reaction...we know very much what he was saying and we also know Sawyer has crazy amounts of potential. And for both boys, prayers and well wishes are always welcome.