Friday, August 6, 2010

My boy.

This is my Peyton Joshua.

Peyton ("PJ") is special to me because he's so sweet. He has a caring and sensitive side to him that is so endearing and unlike anything I've ever seen from a child his age. He has an extra-soft spot in his big heart for his older sister. If she's ever hurt or crying for any reason, he's right by her side, showering her with hugs and kisses. At the same time, he's ALL boy! He LOVES to get dirty, make messes, throw things, hit things with sticks and make as much noise as possible! "Frogs and snails and puppy-dogs' tails" for sure over here...

Recently, we've found out that there's something else that's special about PJ.

He's just...different. Around his first birthday, we began to notice that he was not the same as other kids his age. He cried...ALL.THE.TIME. He didn't point to things. He had a really big problem with textures...both tactile and when he would eat. He would bite every time he got frustrated...which was a lot. He couldn't handle loud noises. He didn't say a single word. All of these things convinced me he was autistic. But he LOVED being around other kids and adults. He maintained eye contact when you spoke to him. He understood simple commands. So I brushed it off.

Fast forward to his 18 month check-up (one month ago). By this point, I KNEW something was up. He began pointing (around 15 months) and was better with loud noises..but other than that things were about the same. The only drastic difference was his new- found temper tantrums. PJ throws the most random temper tantrums ever. He gets one thing in his mind and NOTHING I repeat NOTHING, can come between him and that one thing. For example, if he wants something he's not supposed to have, like a pair of scissors, I'll move them out of his line of sight. This will cause him to lose his mind completely. He'll scream and flail around and try to climb up on the kitchen counter to get them. If I try to pick him up and move him out of the kitchen, he'll bite and hit me and scream like I'm killing him. This is consistent...a few times a day he'll have these episodes. But at the same time, he's very social and LOVES people. He still obeys basic commands, more so than when he was only 12 months. He can point to things if you ask him where they are (but JUST started doing so).

Today was our first day with an Early Intervention caseworker. She interviewed me, spent some time with PJ and then just shook her head. She told me she has no idea how to classify him. A lot of his behaviors are right in line with autism, but he socializes SO well, that she doesn't think he is autistic. She's baffled.

I'm kind of confused by my feelings of the whole situation. I've never been afraid of autism. In fact, when he first started with the signs, I kind of made up my mind that I was not going to let it be a crutch or an excuse for him...for ANYTHING. I'd just have to tweak my thinking and actions while raising him. I felt strong and confident. And didn't even want to tell anybody...if he did get diagnosed autistic.

But now, I get overwhelmed. Some days, after a battle with him, I just cry. I cry and cry and cry and feel inadequate, and cry some more. I feel alone (and I know that's not the case!!) but my biggest support, other than Tim, is my Momma...and she's 350 miles away. Tim works....most of the time it's just me, PJ and Addisyn (who is two and a half years old and we're going through the battle of the wills like crazy lately...she's absolutely no help during his tantrums cuz she's usually having one of her own.) I miss my mother. I miss my whole family, but there are days I just wish I could drive over to my parent's house, drop off Addisyn to play with Momo, and take PJ out for some special one-on-one time, so that I can remember all of the beautiful little things about him that make me so proud of him.

I guess I just need your thoughts and prayers as we learn, with the help of EI, to teach PJ to communicate better, and to cope with his behavior.


  1. Oh Michele, I'm so sorry it's been so rough for you! I'm not sure what it is, but I have some connections with special needs moms (not that he's SN, but they just know *everything* from so many years with OT, PT, and EI appts/research). I'm going to refer them to this, hopefully they have more insight than I do. There is a whole Autism Spectrum - levels of autism - there's not one little box that is "autism". But his social stuff makes his situation a bit different. Love you girl, wish we could sit and talk!

  2. Michele, I wish I had a good answer for you about your little guy! I spent the first (almost) 7 years of my oldest daughter's life trying to figure her out as well before we finally were able to get a diagnosis & recognize that she has Generalized Anxiety Disorder. Those first 7 years were so frustrating! I realize it's not exactly the same, but I really do "get" the frustrated mama end of things.

    Today is that baby girl's birthday. She's 14 today & totally "normal". She's been on medicine for the past 7 years and once we put our finger on the problem, she's been a JOY to raise & learn about. We do make a few modifications to the way we handle things with her, but aside from that & her medicine, life is pretty much totally 'normal' for her. (And I put normal in quotes because really....what's normal? Are any of us? ha ha!)

    I'll be praying for you as you advocate for your little boy & work through the intricacies of his sweet little system.

    And while you're researching & looking for an answer, I'd highly recommend the book "The Out of Sync Child". I bet PJ will fit one of the profiles in the book!

  3. Hi from NZ Michele. I'm an old friend of Suzie and her family. I was wondering about your birth experience with PJ. I was a nurse and now a counsellor using bodymind perspective. I have noticed of there was a very short or very long birth or C section that in some little ones there is an interruption in the 'wiring' of their brain. I've seen great results with crainial osteopathy, re patterning developmental stages and dietary adjustments. Anyhow it may be worth looking for a reputable bodymind therapist as well as your Dr. All the best for your lovely boy Michele,

  4. Michele I can totally relate. PJ sounds just like my middle son Kolby. When Kolby was around the same age PJ is now is when I began to suspect autism... I also had several people ask me if I had considered whether or not he was autistic... to me it was not something easy to hear. I WAS afraid of autism so I really wanted to pretend I didnt suspect it. I never said a word to health care professionals...and just hoped he would outgrow it. Like PJ Kolby displayed several characteristics that suggested he was not autistic. However like PJ... delayed speech... frequent crying/violent/uncontrollable outbursts...he didnt know how to deal with any sort of frustration other than to have an incredibly violent outburst. When I tried to talk to him or calm him it was like he just didn't get it... he wasn't 'there' He didnt have problems with texture however he had an intense sensitivity to light... if it was too bright it would send him into one of his episodes.It was scary and I didnt know what to do. I cried alot.

    Around the age of 3.5 Kolby began to grow in leaps and bounds socially/emotionally/communicatively...

    Flash forward to TODAY. Kolby is 5... will be starting kindergarten in the fall... and is a fairly normal 5 year old. We still deal with the occassional outburst. okay. usually once a day...and playschool was interesting to say the least... But much better than what it was! His sensitivity to light has faded... He speaks fine... has a couple speech impediments... but he is doing great!

    I dont have the time to go into much more detail now however if you ever have questions or just want to chat let me know :)

  5. Hey sweet girl! I too went through early intervention as you are. I know the ups and downs of 1 step forward and 2 steps back. It is hard and frustrating! Cal didn't really have a specific "classification" either, but I knew enough from research on my dad who has autism and OCD to look into a sensory disorder. A sensory disorder is hard to spot and looks a lot like autism. The thing that made me realize cal didn't have autism was the social aspect. He LOVED people and play time with others, met your eyes and all of that, but he had extremely delayed speech and bit while frustrated as well. He had many ear infections as a baby/toddler and so it didn't help him as far as speech goes or his auditory sensitivity.
    He had tantrums all the time, especially when he really wanted to say something but couldn't or really wanted something and felt as though he couldn't get his point across.

    All of this to say, the thing that worked for me best during tantrums was getting eye level and calmly saying, "cal, mommy understands you want that but I said no, to keep you safe." He finally got the drift and he knew I understood him. The other thing that helped while he was frustrated with noises or too much emotion was joint compression. Your specialist should know what that is and can show you. It may help PJ, because many times they bite to feel something concrete and solid so it really helps. The tantrums should decrease as his speech increases and he is better able to deal with whatever his feelings/anxieties are. There is light at the end of the tunnel, I am here if you need to chat about the process or anything at all! I know this is a long post, but it takes a lot to explain all the stuff :) Both your kids are wonderful and beautiful and so cute and lovable! I know that first hand! Ask Timmy to watch Addy so you can have some PJ time! OR you can let him take a late nap and keep him up a lil longer for some special mommy time :) That is what I do when 1 of my boys need some special time :) I know what it is to be away from family! It sucks hard! You are by my family and I am by yours! That is just ironic!

  6. I'm glad I discovered your post this morning (although I'm procrastinating from school!). Will do our best to keep you, Tim, PJ, and Addisyn in prayer. He knows.

  7. wow. i'm extremely broken for you Michele. What hard times. I have no advice, but it was awesome seeing so many supportive and wise suggestions from your peers. I will pray for your family, ultimately that God would make sense in everything. He knows your little PJ, in and out. When I am in a broken place (which, when are we not facing something?) what helps me embrace God in the mist of trial is knowing that the greater the suffering, the greater the glory. You are in my thoughts and its good to see you sharing so we can pray in light of the situation. May God shine on you love and give you grace and wisdom