Sometimes, someone telling you something you already know, can STILL hit you like a semi.

AshleyDehaven

So Thoren went through his secondary screening for Autism assessment yesterday. Basically, this test (STAT) along with his MCHAT score get filed into his medical information to help us get seen for official diagnostic testing as soon as humanly possible, because at this age every week that he misses out on intensive ABA therapy is sort of a tragedy. His brain is in this amazing stage where he is so sponge like that we see improvements every single day with the therapy we HAVE been able to establish. Anyways, so he was assessed yesterday, and basically the way this test works is there are 12 activities to go through, and how he reacts to them is translated into a score, they are looking for specific instinctual and social behaviours to determine if he shows characteristics more in the line of a typically developing child, or a child with Autism. At his age, a score of 2.25 or higher, means that Autism characteristics are present, and that this is a very high likelihood that the child will be diagnosed with ASD. Thoren scored 3.75. I knew, i knew that this was where we are. I have known who my little boy is for months now. But man, i fell apart. I don't even know why. This test is a good thing. It is going to grease wheels for us so that we can get him into ABA so, SO much sooner, and that is the top priority right now. But, when our therapist was going over the scores with us, and explaining to us, how in Thoren's brain he doesn't recognize that he can come to us for help, that he just doesn't understand the concept of relying on others, i just.. Lost it. I have never cried in front of one of his doctor's or therapists, not a case manager, no one. Every time i explain to a new person where we are, and what we know, what we suspect, and what we are hoping for, i go at with an attitude of total efficiency, caring and passionate of course, but with professionals i am direct, i am thorough, and i am firm. That is who i am, that i what i do because without these people being in my court and on my side i can't accomplish everything i need to for him. I sound like such a freaking robot, but i have spent so much of my life being walked all over, and where Thoren is concerned i will not tolerate it. So.. Getting emotional in front of them.. I've never let myself. Even though rationally, i know that these women see it all, i know that they understand, but i just couldn't. Then i did. I just did not get a choice, that break down was happening whether i liked it or not, and i feel.. Guilty.. I feel like it's wrong to cry about who my son is, what he is, what he is going to have to overcome.. I feel like grieving for the life we expected for him cheapens somehow the deep and unshakable love that i have for him. I feel terrible for feeling so sad for him. I know that rationally, we caught this early, and he stands an amazing chance of being just fine. But i worry, god i worry so much. I worry about school, about friends, i worry myself sick about bullies.. Thoren is non-confrontational to the extreme, to the point that other kids are already honing in on it, and taking advantage of it. He isn't even in preschool yet. How the hell am i supposed to send that child out into the world without me. How am i supposed to trust that anyone but me is going to care enough, or have the time to make sure that something awful doesn't happen to him because his lack of social understanding makes him an easy target? He's brilliant, he's sweet, he's funny, and wonderful, but you could sit right in front of him, and speak to him? And he'd barely know you were there. He's mechanically minded, so much so that it is scary sometimes. If it is a physical concept, like a puzzle, an obstacle, and he sees how it is done just once, he's got it. He walked early, climbed early, runs full tilt, will take running leaps, jump off of stairs, he knows no fear. He watched the cat climb onto the table by way of the chair, and the next day he did it himself to get a toy down. He figured out that he can get from one end of the living room to the other without ever touching the floor my climbing on the furniture, and tables, and taking a leap of faith. He pushes the ottoman, or his toy box up the bookshelf to stand on it, to get something out of it. He knows how to work the xbox controller and all of the remotes, he knows how to rewind movies back to his favorite spot. When we pull out the binder with his movies in it, he runs and grabs his blanket, climbs onto the couch and waits, either alone, or with his head in my lap. He's in there. My sweet, brilliant, wonderful boy, he is in there. He just.. Can't talk to me.. And doesn't know that he can ask me for help, and it's killing me. I love this child with every single fiber of my being, and i just.. I don't know what to do. Soon they are going to officialize this. They are going to diagnose him, and it's forever. I know that it doesn't actually change anything, but for some reason i am dreading it. We have barely told anyone. Just family. Soon, i mean, everyone will know, and it's not that i am hiding it, it is that i was trying to protect him, and myself. People can seriously suck when this topic comes up, and in the beginning i got a lot of flack. Now my family understands, and is on board, but i just didn't want to deal with it until we knew for sure. Well that time is pretty much here, and what do i say? "Oh, by the way, my son has Autism, doesn't speak, and barely knows you exist let alone gives a shit about whatever pointless word you are trying to convince him to say."? That sounds so harsh, but i am getting so freaking irritated with people shoving their ideas of how i should be raising him down my throat. People telling me how i can "fix" him. He isn't freaking broken. He is smarter than these a$$ clowns will ever be, and unfortunately, the disorder that helped that happen, also made social skills very, very, difficult for him. That doesn't mean he will never learn, i have every faith that he will, but social situations are likely to always be more of a challange for him than for other children. He's not broken, he just learns different. His brain is so focused on figuring out the world around him, that it gave up on relationships, and words, and expression. That's hard, but we are finding ways to work with it, and to nurture him and the last thing i need is some faux-conservative, "in my day we did.." toting, matriarch wanna-be, sitting there and telling me that it's okay because "smart people usually are social retards". I shit you not. 

OMG this is a novel. I'm so sorry, i just.. Have had a very long, very difficult week. 

DCKate

b0710 said:

Just sending a big, creepy Internet hug. If you ever need support or to vent, we are here! Thoren is in great hands...he's lucky to have such a great mama!

Amen!

Mom2anAngel2

Sending many HUGS your way! Your doing a great job for your little boy!

OhBaby+2013

You can do this, he can do this, you guys got this!! The fact that youve already gotten this far at his age is great! My best friends son was just diagnosed with Autism and he is 2.5. I can only imagine how much farther ahead My friends son would be if They had caught it a year earlier. It's ok to mourn the life you thought he'd have, so long as you are still living and enjoying the one in front of you. Itsok to be scared about his future, it's natural for every mom. Hang in there, and know that we are here for you! Hugs!

martha919

I want to say that you are an awesome mom and Thoren is in great hands!

I know it's a totally different ball game, but I was crying reading your post because I've had so many similar feelings with Amelia's allergies--guilty for feeling upset about it, worried about letting her out in the world at all, school, how people will react when they know (old-fashioned family that thinks food allergies aren't real, yay). Not to make this about me at all--I just want you to know that someone else has and does worry about similar things.

Sorry that was long. :-) You're the best mama Thoren could possibly have!

Jessie333

Big hugs. You are an amazing mom and doing the absolute best for Thoren. He is so lucky to have you.

ConstanceGoodspeed

You're doing great. You'd still be worrying about those things (to a much, MUCH lesser degree) even if he wasn't a child with Autism. It just means you ate a good mom.

ConstanceGoodspeed

ConstanceGoodspeed said:

You're doing great. You'd still be worrying about those things (to a much, MUCH lesser degree) even if he wasn't a child with Autism. It just means you ate a good mom.

Yikes. I'm leaving this typo.

spainy17

I had this in the mini version when DD couldn't swallow rightafter birth and couldn't take a bottle for months.  I felt like a psycho robot going from doctor to doctor and evryone telling me it would be ok or some stupid story about how their kid just didn't like a certain type and if I would just try another kind it would all get better.  I knew something was wrong and people were asshats.  Well you have been right about your little boy from the beginning and until now I didn't even know you could get diagnosed as early as Thoren and am so amazed by how much you have been there for him so early.  He is blessed. 

luvindanimals

Sending you hugs! I think what you are feeling is what any of us would feel. You are an amazing mom for getting the ball rolling for your sweet boy. I have seen first hand the benefits of early intervention for a child with autism. I have also seen first hand children without autism accept a child with autism as just a perfectly normal friend of theirs. At my preschool we partner with a school for autism. The children in their class are brought to our classrooms for inclusion time so they are getting to be around other children without autism. My class of 2 1/2 to 3 year olds love their friend that comes in to visit and play. I would definitely recommend a school like this if any exist near year. Definitely looking forward to updates as he progresses. I know you are getting the help he needs but I hope you are getting the support you need too!

OhBaby+2013

https://www.huffingtonpost.ca/kathleen-oagrady/autistic-child_b_6002898.html Just read this article and thought you might like it. I agree with @kittynap and I too promise to make sure my boys are accepting of all people, so he's got friends here too!

ReeceFamily

Thoren is exactly who he is supposed to be. I can hear how much you love him and believe in him.  Beautiful!

ambmama

Hugs mama! You are doing everything you can and you will all be ok. I understand your worry and fears and I think it's perfectly normal to feel them and talk to people about them! Also, I don't like to be emotional in front of doctors, but right before we got discharged when T was born we found out that he has VSD and a heart murmur. It could have been not a big deal or it could have meant a whole lifetime of treatment. I lost it and sobbed for a long time. How could my perfect baby that I already loved more than I could even know have something so major going on inside him? Hugs - you will get through this and keep striving!

ohiodoxiemama08

That's not easy for anyone to go through. Hats off to you for doing everything you can for your son. And you are so right, the earlier he gets ABA the better. I think I've told you before that I worked with a little girl that wasn't quite 2 and the progress she made in mere weeks was ASTOUNDING. I am sure you are going to see huge leaps in your son when he starts his therapy. And he already sounds pretty amazing.

Also, I do respite care for a little boy on the spectrum (his dad is career Air Force)  and his mom is just about the most amazing person I've ever met. If you ever want me to get you her info so you can contact her I'm sure she would be more than happy to talk to you. She went through the same thing with her son (he was diagnosed at 18 months) and she is just wonderful--and such an advocate for her son. I'd be happy to pass her info along.

emja0214

You have been so strong through so much, Thoren's treatments, your own health, your big move....it is OK to let it out. I would have broken down a long time ago. I am in awe of your strength! You are doing everything you can for your precious boy and he is the luckiest to have you for a mama!

bennikki

You have been so strong, and like you said, these professionals are seeing parents react the way you did everyday.  Crying is what you need to do and venting on this board is what you need to do, and we're all here to support you.  You are an amazing mom, and your little guy is very lucky.  Like you said, this news means he's going to get even better services earlier for the best possible outcome.  

jobiann

You are so strong and Thoren is on the right path. You son is beautiful and other people will see that in him as well. There are always bullies, always people who think they are better then others, we see it in our lives at 35 years old. And it's only natural you, his mother, wants to protect him.

((hugs)), you are doing so awesome and you shouldn't be ashamed to have a good cry, it's a natural reaction to dealing with difficult situations. I'm sure you are exhausted, you guys have been through so much and there is so much more work to do. Just please take care of yourself too.

Sending tons of creepy internet love your way...I wish there was more I could do.

3JTMom

Your emotions sound normal. You did not want to break down, but it is totally understandable. You are a great, strong, loving mama and doing a great job. Keep going, Thoren is perfect the way he is and he needs his sweet mama!

caseylynw

My brother in law is severe PDD. Hes 10 now and wasnt diagnosed until he was 5. He is not in any therapy, never sees a doctor, he goes to school and thats it. I am amazed at how well he is doing without any assistance. He communicates, he starts conversations now. I can only imagine where he would be if he had been diagnosed sooner or if his parents had put him in therapy programs or asked for help.

I am so proud of you for having the courage to notice that there was a difference in your child, in searching for the answer. Keep him on the path you have planned, work with him on his problem areas. And be afraid for him. Because he has none that is the one thing I havr learned being around children in the spectrum. None of them fear anything, their parents need to feel it for them.

AshleyDehaven

Thank you ladies so much. You have seriously been my sane place these last few months and i am so beyond grateful for this board. Not to sound internet creepy, but you guys are some of my best friends in a way.