Overloaded

Monday April 12th
(I almost didn't post this from Monday but I figured if I am being truthful in this unknown journey then I ought to post it).

I am done with the research for now. I think my mind was on overload. BIG TIME! The more I read the more I am sure he couldn't possibly be autistic. Then I read some more and think "WOW! I really think I know where this whole thing is going. He must have autism". SO for now I choose to be done with the research. I ordered a few books off Amazon and they are due to be here today. I'll read those, but other than that I can't worry anymore until we know more. I have informed myself all that I can. It just gets more confusing and I flip flop constantly on what I think.



With the constant confusion of what I think, there is such a real range of emotions that are coming through me in huge waves. I can accept my sweet and loving son with a special need. What is hard to swallow is we carry our babies just praying to get through that first 12 weeks, then the ultrasound and birth with no bad news, scary possibilities. Yet, here we are after almost four years we are hit with something that could change our thinking of we need to raise our child. What knowledge we will be filled with and mostly I wonder "How in earth is God going to use me through this? What is the ultimate purpose?"



With waves of emotions I'd lie if I said I never felt angry. But this may surprise you but I have never once felt myself angry at God, or autism. I (and think I can say we), as in Ron and I both, find myself angry at people. For me there are those few people that just say the wrong thing, or the way they look when they say it. That "I told you so tone/look." Don't get me wrong we have gone out and ASKED a few people for their respected opinion and that has been clear and helpful. I am grateful for the few people in my life that can agree sweetly when I talk about the obvious differences in TJ vs other children his age, Or even children younger :( . Sometimes it's a comfort knowing that his actions are not in my head and I can be done validating that "he is just all boy". He is truthfully much harder than that. Things he should be well aware of that are NOT OK he still does, gets into, etc.... Parenting him has never been easy. I have always felt (since he was about 12 mo old) that there was more to his energy, lack of responding and listening, obeying, jumping constantly, super independant, over activity, always running, going ALL DAY LONG, than just being a boy. Now that this is out of the wood works people are so sweet to inform us that they knew, felt or wondered. I know I have talked about it before making comments like "If he is ever diagnosed with ADHD or Autism I would not be surprised. He is just so different, difficult". Almost in his own world, rarely responds to his name when called or asked to come here. So is this truly a sign of autism or that he knows we will give up or just come grab him/chase him and get him. ?? AH! So many obvious signs yet I question each of them. SO if you know someone who is going through this other than me, don't tell them you knew, or remember when I said this, or that? I probably don't and you will just hurt my feelings making me feel like a stupid mom who couldn't even tell that his behavior wasn't all normal. I am working on resentment on a few peoples comments (Truthfully only a few and I will never tell you so don't ask or apologize) I will get over it. ;) I know that most people are supportive but when you are out to prove you "knew" a long time ago, it'll just make me mad. Unless you have an autistic child, know about autism, have counseled autism, or have a PHD, just love us and pray for us as we figure this all out.



Well, the truth was told. I decided to document this journey in hopes that in the end it will be an overreaction on our part, a well intended gesture of concern from his speech pathologist and that his ped dr is dead on. However, if not then I can recount this and maybe it will help someone in the future get through an autism diagnosis and know that all they are feeling is normal and ok.

Cont. Wed April 14th
Over the past week we have really been watching TJ and looking for anything that "could be" a repetitive behavior that is out of the "norm". We have noticed some things. I though I had better write a little more about what I see in him. His personality, behavior. And remember while I write about TJ today the little things that "could be a sign of a child with autism" I can also find a valid reason for him acting that way or doing it. Maybe it's just denial. Maybe it's the fear that just because it's a classic sign it will be a point tallied towards labeling him.
These are things we see now. I will have to really think back to when he was younger to know and remember his behavior/things then. Those just are not clear. Truth be told there is a lot of things he is doing now that we are SO PROUD OF, however it still just seems like we are stuck with him being like 18 months old-2 yr old behavior, talking, reactions to things etc....

Right now TJ is saying A LOT of single words. I couldn't even list them there are that many. YAY! Huge improvements in the past 8 weeks. Before he would at least repeat us but rarely saw something and said the word. It's all the time now. He actually for the first time said two words clearly Monday when we took Carbon to the vet. "Come In". I looked at Ron and asked if he just heard that, two words together. It was awesome! He repeated it many many times. And later that day I asked him to tell his big sisters what he said. They were so happy for him, which made him excited.
So single words, he is getting better at showing us easily what it is he wants, or truth be told, he just moves the bar stool and gets into it himself. TJ has a TON of energy. He literally goes from one thing to another very quickly. Every now and then he will stick with something for some time. Books, maybe a movie of HIS choosing (Cars, Thomas the Train & Robots are his top picks), play with the toys in his bucket, and of course he could spend all day in the tub. Ha, ha! I know better than this and actually feel a little bad because I rarely give him a bath. It's showers because he will splash, and splash and splash and SPLASH even when constantly asking him not to. Even when threatening him not to. SO baths are far and few. Which leads to some of the behaviors in question. He does not listen very well. He runs off a lot and is super independent. We could be in a store and he could take off (and he is fast, like world record sprinter fast) and not care that he didn't know where we were. It could be hours before he maybe needed us. Scary!! He likes to be outside. We often find him outside and down the street, or others backyards. This has been an issue for over a year now. I can't even imagine the day we will be able to let him go out and not have to be watching his every move. He seems to not get the clue of what dangerous is. He seems to totally ignore us most of the time when we tell him to close the door/stay inside. If he leaves the room we are in we only have a few moments before we need to check on him. He gets into everything. Toilet paper rolled out and into the toilet, into the drain of the sink, water going, toothpaste squirted out all over, toothbrushes in the sink. I've cleaned more kitchen/bathroom water messes than I could count. For real! He will get into any one of the girls rooms and get into their bags, games, papers, toys. If he spills or drops crackers, he will step all over them. The messes are endless. Today I am shocked that the laundry is still in a pile on the couch and not scattered all over the place. He likes to throw them off the couch/out of basket. I find him getting up on the counters, table and into the fridge if we have something he decides he wants to eat if he knows it's there. Go-gurts, yogurt, and Z Bars.
Some things we have noticed physically. Not that we see it all day, or even several times but enough that it is noticed. He loves to jump and jumps when he is excited. A LOT! We have noticed over the past few days (I noticed a few months ago but never pd much attention) that he flickers his middle/pointer finger. I honestly first noticed when he was "tickling" us. He would "kickle, kickle" us and his fingers would do that. He does it at us, our face, when he is walking and running. I lay down with him at nap time and notice he does it each day, but not for very long. Also the past few weeks I notice a few times a day him sitting, walking or even running with his head tilted to the side with his ear on shoulder. He used to walk on his toes. We first saw him walk on his toes one afternoon at the in laws. His cousins walks on his toes when he doesn't have shoes on and we saw TJ go walk behind him and walk on his toes. We maybe see him walk on his toes every few days but it is short lived. Nothing he does seems like it is done for any length of time or continuously. He plays with the light switches, but not like he has to turn them on or off when entering or exiting a room. More like just playing with them. He spits often. I used to flick his mouth/cheek when doing this but recently stopped and have chosen just to tell him it's not okay. But the spitting, for no apparent reason happens off and on all day. Sometimes with food or drink in his mouth. He repeats the last word when I tell him something or ask him a question about something. (If I ask him a yes or no question he answers correctly with what he wants/thinks). This is so nice! Another things that was sorta mentioned to us by a friend was his fixation of textures. Hugh? This confused us but TJ loves touching faces, we feel that he touches faces when he wants our attention or for us to look at something. He turns our face towards what he wants us to see. He used to hit a lot and sometimes still hits our faces and arms when we hold him. We would tell him to be nice and take his hand and have his hand softly touch our cheek where he had hit us. So is this why he is always touching peoples faces?? (I HOPE SO). Our friend told us when we went sledding that TJ came up to him and was touching his coat, then pants then boots etc... We wanted to say well, maybe he was saying "Look you got snow pants on, a snow jacket and boots like me". Maybe he was wiping the snow off. (Ron's arguments). ;)

So looking at the things that are sorta classic signs that he could be autistic are there, however there are so many things we get confused on. Some of the things on the list were an issue but are not anymore or as much. However, he is 3 yrs and 7 months old. When are these things seen? If they were to look at him a year ago I bet they would have said yes based of development and behaviors. Maybe not. We just don't know. TJ likes to snuggle. In past 6-12 mo he holds our hand back, not just us grabbing his arm. He listens a lot better but nowhere near what it should be for a child his age. He loves to go out and do things, be around people. He likes to be doing anything, anywhere. He is very loving and hugs anyone. He looks at us better than before, eye contact that is, not looking "past" us as often or at all like when younger. He plays with kids older then him, but not really kids his age. He acknowledges his littler cousins. So with each reason they could point to yes he has it, it just seems that there are too many great things he is doing that make me feel there is no way.
I have read some blogs of moms who have a child with autism, so many things fit. Then again SO many things don't fit. TJ doesn't throw weird fits when we do something different. Maybe because he is child #4. There is no way for a perfect schedule for him. He has to be flexible. Which it seems he is. He is picky but eats a decent variety of foods.
To sum it up it just seems more like TJ is stuck in the toddler stage and not moving past it. He acts like most of the 18-24 months old we know and I used to work with in childcare. There are many kids way younger than him that are passing him up in speech, understanding of what is appropriate or not, what is not safe, okay to do or not do and flat out maturity. TJ just seems stuck in this place where we have to still watch him all the time, every moment. I am so tired and burnt out. I have loved and been excited to see each of the kids grow. I have loved getting further away from the infant toddler stage, but seem to still be stuck there. This is so hard. Just grow past the baby/toddler stage please. :)

Today I feel okay either way. I just wish I knew what the "professionals" thought. I hate waiting. I have never been a patient person. So waiting to hear what others think that could change our lives a lot, the future of our family dynamics, how our girls will grow up with a special needs brother that we hoped would beat the snot out of any boy who laid their hand on his sisters, etc... Today I feel like I am wasting my time with the whole things and TJ will not be in the autism spectrum. Today I feel like he is acting like a normal calm sweet little boy. Heck, I've been able to be at the computer for an hour now with only a few yogurt messes. Yep, a yogurt and 2 go-gurts later!
Keep praying for the people that will be evaluating TJ please. I signed the papers and when they have time or it gets put through things will get started. I really like his speech pathologist. She appears to be there because she loves children and her job, not for a paycheck. But I guess you never know. And lately the ESD place where he is going hasn't had the best publicity regarding the use of funds, or missing funds and people being let go/fired. So we are skeptical of course that they may want to label him just for more funding. We will get a 2nd opinion if they feel he is autistic. If nto and the things that concern us don't improve we will have hm checked again. I am SO glad that Ron and I are getting through this together. It hasn't been easy as we are both overstressed, while trying to process the possibility, and cope with our feelings we have had in the past about TJ. I think we had a little wake up call to be way more patient with him. There is a slight possibility that he may not be comprehending what we tell and expect from him and that he isn't just a naughty boy who doesn't care or doesn't listen. :( My heart breaks at the whole things. He is so sweet and loving. He is cute too. I just pray that others will see him better than I have for the past 3 years and see him how I see him now. I boy who is for sure behind in comprehension of what is okay and what isn't and who is behind in his communication and speech.
Until the next venting session or eval update..... God is good! He is the same today as He always has been.
(Sorry for any typos, I have done a quick spellcheck and proofread but gotta go before the tornado makes it through the house. And my books just came hope to read some while TJ naps. YAY!)