She called...and emailed me the report. And oh man, it's good news. We have a long road ahead for sure (I'll explain in a bit) but for now (and hopefully forever) autism is off the mother effing table!!!! At least for the next year to eighteen months. If you could only see my enormous and ridiculous grin. It hurts my face. When I talked with her over the phone she indicated that she didn't get "an autism feel" from Mr. Pants. And that in her opinion, Mr Pants has a severe speech and language disorder that is affecting his congnitive development. She acknowledged his sensory issues and believe they are playing into it as well. And his repetitive behaviors put him at risk for OCD. All of those together, she believes, are creating the other behaviors that are presenting concerns similair to kids on the autism spectrum. Two things are keeping him from receiving a diagnosis of autism. Those two things are eye contact and reciprocal social behaviors (ie: he totally shows love, gives love and desires love. And all of those other emotions too like happiness, sadness, anger and excitement). He tested within the spectrum for three of the five catagories but WAY off the spectrum for those two and because they need to be on the spectrum for all five catagories, autism has been ruled out. For now. The year between two and three is critical though and we will need to be mindful of his progress and skill aquisition. We need to be sure he isn't losing skills after he masters them. That would be bad and we would need to have him re-evaulated sooner should that happen. BUT (and it's an enormous BUT), Doc doesn't think that will be an issue with him. She really doesn't. And oh my good gravy it is making me insane with excitement! See my biggest fear for my baby boy was that he would be ostracized by his peers for being unable to connect socially. That he would be treated differently. Cruelly. For something that he could not help or understand. And while I know this could always still happen, I am so effing grateful that it won't be because he can not make friends. And that if it does happen to him, he will be able to communicate his feelings and accept support and help. He doesn't have to be popular or even involved in school activities. That stuff will never matter to me. My wish for him is that he will be able to grow a relationship with his baby sister, make a friend at school and someday find an emotional connection in a partnership with whomever he loves. And oh boy, the tears are flowing as I write this. All signs point to he will be able to (HELL YES!). I'm a happy mess.
So now we have to ramp up the therapy. It's time to kick it up several notches. He is communicating below the first percentile for kids his age. And that's just about as bad as it can get for a kid without autism. We need to help his growing brain make more connections and keep them and place all of our efforts on developing his expressive and receptive communcation. And this doesn't mean just words or speaking English. This means all of the facets of communication. Speaking, relaying ideas, understanding concepts, distinguishing between objects and understanding nuance. We have some work to do! Hopefully as his ability to communicate grows, his stress responses (the OCD stuff: opening & closing, tuning out, patterns etc) will diminish. Fingers crossed. He seems to be dealing very well with his vestibular and other sensory issues (but I totally knew that). Something that stood out is that they believe that his vision is affected somehow. So that's on the list of things to get evaluated now too. Wouldn't I feel like an asshat if he's needed glasses this whole time? Aaaaaand, my brain hurts. It's a lot to take in, because my mama heart stops at "not autism" and swoons. But we have work to do. And I have no doubt that Mr. Pants is up for this challange. And his mama and daddy will be right there cheering him on. But for today and the next few days, I'm just gonna play and snuggle with my boy. Who I am so proud of. And it never mattered what was coming in the report, no amount of anything was gonna change that.
Since we began this journey that lil dude is on, I have received so many contacts and messages of encouragement . So I want to thank everyone who is rooting for my boy. Thank you so so so much. He is a wild little guy who is funny and exceptional. And it makes my heart swoon that others see his light too.
Jesus, Mary and Joseph (sorry mom)!! I am so mad right now I could spit nails! I am having a full blown hissy fit and want to break something. Meanwhile Mr. Pants is decorating my living room with toilet paper and I don't even care. On Monday, the receptionist -> for the doctor -> who needs to talk to me -> before I can get the report -> about whether or not my kid has autism, called me. She asked me what times yesterday and today would work to receive a call from the doctor. I told her. She told me what times the doctor had booked up and to not expect a call but to remain ready all other times. Guess what? No call. Nope. Not even from the receptionist saying that something came up and they needed to call me another time this week. Nothing. So I just want to say out loud. F&%#!!! I carried my phone with me every single second for two days. Waiting. Does Dr. I'm Rude realize that carrying a cell phone with the ringer on into the bedroom to nurse your baby sleep is dangerous? Or has she considered just for one minute that maybe JUST maybe I have been patiently waiting (which I hate to do) and torn up inside wondering what the hell is wrong with my son? I mean, she has to understand that right? That every single day, I go back and forth a million effing times. He has it. He doesn't. He's acting bizzaro. He's perfectly normal. At the end of everyday I force myself to say out loud, "He is going to be ok" in the hopes that I will eventually convince myself enough to stop waivering. I do believe it. Usually. But I work very very hard to hold that line while the voices in my head try very very hard to muss it. And it doesn't help when you say you will call and you don't. Because if you had called, I could have told you that some things are getting really hard for us. That he is lining things up and grouping and spinning more. That is tantrums have become really difficult for me to physically handle. And I have no choice but to try or he hurts himself or his sister. I took his skull to the bridge of my nose yesterday and saw stars. My two year almost broke my nose. And it didn't phase him. Not one bit. I need to tell you this stuff Dr. I Won't Call You Back. Because the last MONTH since we saw you guys has been a rollercoaster. And I need to know what is typical and what is not. I need to talk to someone who knows what you know. I don't begrudge you your honeymoon or even the extended time it is taking to get me a report/the answers that were promised to me weeks ago. What I do wish though is that you would call me. Like you said you would.
As I crazily typed this, Mr. Pants came over to see what all the fuss was about and diffused me in about 15 seconds. So I turned my phone on and got a little bit of it. Thanks little dude. You read your mama like a book. Which, incidentally, is not a characteristic of autism. <- see what I did there?
"He is a light. Like the biggest light. Yeah his brain needs help with making certain connections. Yeah he's totally strange. Yeah he's having some difficulty in a few areas. But his light is so bright. And none of that other stuff changes who he is or makes him less than awesome." This is what came out of my mouth during a recent conversation the husband and I were having about Mr. Pants. We have them from time to time. The worry starts to set in about the impending diagnosis and we start to let fear creep in that our amazing little kid will have a hard life or that other kids may not understand him or that he will regress at some point. I've talked before about my line in the sand
. And it's still there. It gets a little mussed at times, but I am still redrawing it. It gets mussed when I see other traits of autism pop up. He's lining stuff up now and the spinning in circles has ramped up a bit too. He still doesn't understand anger in people. He thinks it's funny. He really doesn't get it. When I need to discipline him I must keep an even tone, even if he is doing something crazy dangerous. Because If I yell, he thinks I'm being funny or silly and keeps doing whatever it is that he shouldn't be doing. There was one
time that me shouting to him actually stopped him but I know that is because the sounds that I made trying to stop him from plummeting into a creek
, confused him long enough to distract him from what he had been doing and he changed coarse. He hadn't heard that come from me before (I probably sounded like a stampeding wild animal. That's my best guess). But while these things can scare me a bit, he is also doing things that are really encouraging. Like immitaing us, pointing out a few things in picture books, pointing to a few of his body parts and going to his baby sister when she cries.
The other day I watched as he tried to explain to Plum in his language that, while he did not want her to be sad, he simply was not going to be giving her his beloved singing toy. Then he walked away. And she started to cry. So he went back to tell her again (and he even has a special tone of voice just for her. And yes it completely slays me). She'd smile, he'd smile. Then he'd walk away. And she'd cry again. So he went back to try and explain it better. She listened and giggled as though she understood him (maybe she is the only one who does?) This went on for about six cycles and I just watched. In the end, Mr. Pants sat down next to her to play with his toy. Score one for Plum! She appealed to his heart as if to say please don't leave me, brother. Please stay. And the best part is that eventually he did. He stayed. In his way, he showed her love. He stayed. When I see things like this I think to myself, "No WAY he is on the autism spectrum. No. Way." But sure enough that thought is soon replaced by, "Well, yeah. He probably is" when I see him deep into spinning the wheels on his trucks. So in that zone that he can not be made to come back for a bit. He's checked out. Then he lines them all up until they are perfect, spins for a bit, side-eyes all through the house and I have to coax him back so that he returns to me ready to re-enter the day. I wonder is it possible to have autism only 1/2 the time? All the experts say no. But that's what I see. With the exception of language, he is typical fifty percent of the time and not so typical the other fifty. Who knows what that will actually mean for him. I like to think that it means when he becomes an adult, he will be a ginormous genius at work and a typical loving family man at home. A mama can dream right?
Daddy and I talk about it a lot. We have both gone through some feelings of guilt (don't we parents always find a way to blame ourselves?), sadness, anger and fear. But we always get back to laughing. Tonight it was a story I told him about how when the aunties stopped by for a visit today. Mr. Pants was naked except for two socks and one boot. He engaged with his aunties and talked up a storm in Pantsenese. I told Daddy about how Auntie S was sitting on the couch with her drink on the floor. Mr. Pants sitting next to her. He placed his bubba on the floor just like her. When she lifted hers for a drink, he lifted his. Repeat. It was the cutest. It was interaction with an adult. It was a big awesome thing. But the funniest stuff hapened when he started showing off. Jumping and kicking and jumping as if to say "look what I can do!" like Stuart from Mad TV. Man he was cracking us up. And was loving making us laugh. He was eating it up. And that's how our conversation about our fears turned to laughter and happiness about the amazingness of our boy. He is a light. Plain as that. Such a light. Every single day he does something that makes me stop and revel in the fact that he is mine (and it usually comes right after he does something that makes me want to pull my hair out. Typical kid.) So again, that line is holding firm. He will be ok. I got a call two days ago from one of the specialists at Children's Hospital that did the testing on lil dude. She said that the reports were in except for one part and that the one doctor who needed to add the last part was on her honeymoon. We'd have to wait until she added her piece before they could send me the full report. Oh holy hell. I answered the phone excited that they were calling because dang do I hate to wait. And they tell me that I have to wait up to two more weeks. I asked her if she could give me an idea of what would be in the report and she said that I needed to read the whole thing. So um, yeah. That sucks. But just as I was getting super anxious and pissy because I had to wait, Mr Pants sauntered his naked butt up to me and layed across my lap. He started to rub the fabric of my pants between his fingers. He had been zoned out for a bit and was bringing himself back to me. In doing that he brought me back. I let myself be present with him and he with me. At that moment, he came and brought me what I needed. I needed him. And he was there. He's got some pretty great timing sometimes. So we will wait. It's ok. I've got what I need already. I've got my boy.
We need more dinos to watch over the couch
Oh but it is. For two years and five months, Daddy and I have been trying to read our boy books. He thought it was boooooring. I'd say, "Look Mr Pants, there's a ball! There's a dog!" and I'd point and point and point and point. He'd grab the book from me and throw it OR turn the pages faster than fast and then throw it. But we keep trying. There were times when daddy and I would look at each other wondering, "did he just say 'Open' ? ". But nothing was ever clear. Nothing ever stuck. If he did say it, he never said it again. It's one of those things that concern developmental pediatricians. They call it "losing words" or "losing skills" and it's a trait of autism. I hate that idea. Hate. it. That my boy would have a light bulb moment and then lose it. Having to relearn things over and over. My heart aches at the idea. But here's the thing, he is learning. Wanna know how I know? Take a look at what happened two weeks ago out of the blue....
Never before this day had he pointed out a single thing other than a ball. And he only did that only once about 3 months ago. So this right here is an enormous deal. He is hearing. He is listening. He might not be able to say it and maybe the language is going to take forever to come. But he's learning anyway. And that is huge. So huge. Ever since this happened, I've been finding him off with a book. Looking through it. Eyes wide and in deep concentration. I wish so bad I could be inside his head. He still doesn't want me to read it to him but that's ok. I'll keep trying. Especially because I know there will be a day when we succeed. We just have to take our time. It will come.
Gah. I hate to wait. I hate it. I am the person that strategically moves through a day in avoidance of waiting. I never hit the BMV at open or close or lunch. I go at two o'clock when the luch break crowd is gone and before the after work crowd gets there. I would rather starve then wait in line at a drive through with more than three cars and I will mill about the grocery store for hours if I have to in order to avoid waiting in a long line. I figure at least I'm moving. So it makes sense that I am losing my mind waiting for the results of Mr. Pants' big giant "does he have autism" tests. Tests, mind you, that we spent two months waiting for. Fudgcicle. So while I wait (which I totally hate doing), I guess I will document here how the tests went.
The big day was last tuesday. I got us both packed up to spend the afternoon at Children's Hospital. Diapers, snacks, juice, wipes, dinos. Check! Breast pump. Check! Cooler to bring home pumped milk. Check! Extra clothes for any accidents (because 85% of the time this is needed). Check! Purse with all reports, tests, evals and insurance information. Check! Then it occured to me that I had no idea how I was going to walk my "I will not hold your hand but rather will thrash myself about until you have to make a choice to let me go or my arm with dislocate" boy from the parking garage to the specialists office. This was about a quarter mile. There were 3 elevator rides involved too. This is when I realized I had an Ergo
. Thank the Lordy.
I crossed my fingers that he'd go for it and what do you know? He thought it was cool. The last time I tried to wear him he acted as though I was trying to stifle him/control him/ruin him. He let Daddy wear him once this summer but never me. Thankfully he totally cut me a break and took the ride. When we got to the office, there was no one there waiting and I was like "YES! I hate waiting". The specialists were waiting for us
! I took note of that as very cool on their part. They were very kind and introduced themselves to both me and Mr. Pants. All of them were quick to acknowledge his excellent eye contact. This made me super proud since we have been working on this for 3 solid months and have had great success. As recently as June, when you called out to Mr. Pants he didn't look at you. He very very very rarely looked anyone in the eye that wasn't daddy or myself. And we had to work hard for it. So that they noticed was pretty cool.
We were taken to the office of one of the specialists were it became clear pretty quick that Mr. Pants would be having no part in seperating from his mama. This wasn't shocking to anyone, so they told me I could stay but that I had to be "very uninvolved". I was asked to remain in the chair filling out paperwork and to ignore all that was going on in the room. And that was soooo friggin hard. Ever try and not parent your kid when he's sad or frustrated or stressed? It sucks. I told the worker that if (and when) he came to me, I wouldn't be able to reject him. Not that it would be hard, but that I wouldn't hurt him like that. Maybe we were better off seperating us and dealing with some fallout before the testing, I asked them. But they thought I should stay and were happy to allow me to comfort my baby if (and when) he came to me. So they got started. They handed me about 75,000 pages of questions to keep me busy and began playing with Mr. Pants. For the next three hours they tested his memory, his motor skills, speech and cognitive abilites. They adminstered the ADOS test and asked me about 200 questions in addition to the ones I was answering on paper. Mr. Pants delivered several face melting tantrums and showed off his ability to open and close doors. He side-eyed
and spinned and spoke in his native tongue for them too. When the specialist pulled out some beads and thread he stopped to give them his full attention. Every game he played with him, Mr. Pants mastered without having to be shown how. Smarty Pants.
They were sweet to my boy and also to me. I was really grateful for that. It was also clear that they thought he was pretty cool. He made them laugh. That's my boy. But at the end, there was no mistaking that he was done. Truthfully, so was I. On the way home in an effort to reward him for a hard days work we hit Burger King. But Mr. Pants was so thoroughly exhausted that he fell asleep eating. Food still in his mouth. I started to cry. I felt guilty that he had been through such a hard day. Daddy and I work everyday to make life smooth for the little dude. This kind of stress is very rare for him. I hope we are done with this part of the journey. My mama heart is heavy for him.
People keep asking me how it went, and how he did and the answer is that I have no idea. They had amazing game face. They gave nothing away. Whatever they were thinking, they didn't let on. They shook my hand and said goodbye to Mr. Pants as I loaded him into the backpack for the ride to the car. They'd call to set up a meeting in a few weeks to go over results. So now we wait......and um...I hate waiting.
I could feel my jugular pulsing as my blood pumped faster. My heart picking up the pace everytime he said the word. A wave of fear hit me right between the eyes as he said it over and over again. "Autistic kids may do this", "Autistic kids may do that", "Autistic kids may have....". With every part of me, I fought back the tsunami of tears that was pushing hard against my determination not to lose it. What saved me was Mr. Pants. He was friggin BOOORED with all of this and began turning on and off the lights. So there I sat in a windowless room talking to the doctor about my boy while the room went from flourescent to pitch black for fifteen minutes. This was our visit to the developmental pediatrician.
I keep drawing lines in the sand. When one gets mussed, I draw another one. See, I am a firm believer that developmental milestones are different for each kid. That the range of "normal" is huge. Mr. Pants didn't really do all the rolling over that he was supposed to, he rolled over once and then must have realized that it was pretty boring to leave it at that so he just went straight to sitting up. I am not big on comparing the achievements of kiddos either. My niece is 6 weeks older than him and while she is talking up a storm, Mr. Pants is too. Just not in our native language. So because of this I didn't worry at all when by 18 months he wasn't repeating us, or imitating us or showing me where his nose was or saying "mama". Hell he wasn't even looking when you called him. Eye contact wasn't his forte. Especially if he was locked into doing something. I'm pretty sure a tree could have fallen in the living room and it still wouldn't get his attention.There were a few days when I started to think that maybe he couldn't hear. But one night while laying in bed, trying to get him to stop pushing his foot into my face and settle enough to to go to sleep, he finally began to drift off. Until a dog started to bark outside...."dog? dog? dog?". Yep, he could hear. Damn dog. So as the months went by and he still wasn't talking, I admit that I started to worry. And I started calling out for some help.
We've been on this journey for a few months now. Mr. Pants has been evaluated and started an early intervention pre-school. He's been screened and tested by therapists and doctors and specialists. I've gone in and out of fear, sadness, anger, stress and doubt and I've come to an understanding. My boy is awesome. See, I already knew this. But I had started to forget. I let myself be consumed with the what ifs and the oh my gods and stopped thinking about how he lights up my life like no one ever has. In a few weeks we will begin the testing to see if the little dude falls somewhere on the autism spectrum. And he might, but he also might not. So I'm done being sad about it. No matter what the outcome. Because he's already got the skills that I want him to have. As I watched him yesterday entertaining his baby sister by jumping naked through the room and smiling when she smiled, I KNEW he'd be ok. For me the scariest part of Autism is that some kids can not be social or comfortable with emotion. Mr. Pants gives emotion like he's rehearsing for his Tony Award. He is loving and happy. He is funny and yeah, a little bizzare, but so are his parents. There have been so many things that he has already figured out. He used to cry when his bare feet touched the grass. Two days ago he rolled naked on the grass in the back yard squealing and laughing. He REALLY did.not.like.sand. Last week, he was rubbing sand in his hair at the playground to the great dismay of Daddy Pants. He used to cry when he danced, as though it scared him. Well, dancing is pretty big in this house and he now dances like a pro. He used to be terrified of swinging. It was one of the big no no's. The baby swing gathered dust in the basement. But now, he's wild about them. He throws his head back and laughs and laughs. I could go on and on. He's figured all of these things out. And he will keep figuring it all out. I no longer have doubt about that.
So now I have a new line in the sand. That it's going to be ok. No matter what the tests show. It's just going to be ok. Pants is still the same whacky hysterical kid he was before we started all of this. We just might have the opportunity to understand him a little better. And no matter what happens, If the line gets mussed, I'm gonna re-draw it. The same one. everytime. He's going to be ok. And seriously, so far it looks like chill, level headed Ms. Plum is the odd ball in this family.
The proof is in the pudding