Not what i was expecting. ETA: Updates in thread.

AshleyDehaven · September 2014

Now that we are home and settled, i have gotten the ball rolling to reinstate Thoren's EI services. We had the initial interview, and then the eval with a speech and educational therapist today to determine the extent of his delay and what services would be recommended. I was anticipating him still being behind socially, but i felt we had been making progress in small ways. He is willfully affectionate now and has a few words. But according to their eval he pretty much stopped developing emotionally at about 12 months, and verbally, at about 9. He has a greater than 50% delay in social and verbal, and greater than 40% in everything but gross motor and adaptive. We have to have his hearing tested more extensively, and they want to start the in depth eval process with his doctor to determine is autism is the culprit. Their, and my, suspicion is that he is on the spectrum, though admittedly on the mild end of it. I have to admit guys.. It took every ounce of my mommy will power not to burst in to tears when the educational therapist asked me how i am coping with this. He's my little boy.. My heart is breaking. He is amazing, and bright, so freaking smart that it terrifies me, his personality is limitless.. But i know he is behind. Way behind. I am realizing that this may be a life long struggle, and it's killing me a little. I love this child more than anything else in the world, and every single day it seems like you see something new on facebook about some jerk wad doing something terrible to a kid with autism and i just want to throw up.. I am keeping it together, because i am the only one in my family who will even admit that there is a problem, but i really freaking wish i had the luxury to just cry for a while. Sigh.. Sorry to be a Debby Downer today ladies, but i didn't know who else to talk to.

OhBaby+2013 · September 2014

I'm so sorry you are going through this. I wish I could come over and watch Thoren and pour you a big glass of wine and tell you to just cry it all out. Just take it one day at a time and know that you are doing an amazing job!

ReeceFamily · September 2014

You're not a Debbie Downer - you're a real person dealing with something real. You are doing everything right for YH, which is going to make all the difference in his life. My friend has an autistic son who is wonderful and loving, and who has responded so well to everyone who is helping him that he is now in mainstream classrooms and doing great. YH is so very lucky to have you as his mom

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Mom2anAngel2 · September 2014

Huge hugs! You are a wonderful mom and doing the very best for your little boy. He is so lucky to have you as his mommy!

ambmama · September 2014

Huge hugs to you mama! You are doing great things and Thoren will be so much better off for it. No matter what the official diagnosis ends up being, your smart and now openly affectionate son is obviously growing and thriving with your help! Keep doing what you are doing!

ConstanceGoodspeed · September 2014

Your love is worth more than all the EI in the world. He is lucky to have such an attentive mom.

tdoyen · September 2014

You are being a string warrior mom and I am glad that you are seeking the support you need to be strong for your son! Take care of yourself too mama!

spainy17 · September 2014

I am so sorry mama but you said yourself that he has already made so much progress with the little EI he has had and he is so lucky to have a mom that has pushed for him to have the best care and earliest care he can. You could have sat there in denial but you didn't. You advocated for your son and love him unconditionally and that has given him the best opportunity to improve. You can't do much more than that and he is blessed to have you.

bennikki · September 2014

I'm so sorry you got this news. You deserve to cry, and I don't think the person you were meeting with would have judged you in any way if you did. It's not weakness, it's love. The conclusions they drew at this appointment mean they are going to take the best possible steps to help your son.

court115 · September 2014

Sending you lots of hugs! You are so strong and are fighting so hard for your son. If you want to cry, cry! Let it out. You have a lot on your plate right now and I'm sure the person you met with sees tears on a daily basis. You are a strong mama and you will get through this!

Jessie333 · September 2014

Sending big hugs. I'm sorry you have to deal with so much. You are such a strong woman! T is lucky to have such an amazing mom.

jobiann · September 2014

Hugs Momma, I cannot imagine the roller coaster you are on right now. I too wish I was there with you so I could simply hug you and let you cry as much as you want.

You are doing AHHHMAZING, you knew Thoren was behind, you had it addressed and you are moving forward with what is best for him. I too know several LO's who are on the spectrum and are very loving, caring and intelligent kiddos who are in their regular classrooms with some extra sessions for one-on-one to assist with the areas they need help in. They are happy, oh they are so happy!

Take one day at a time, celebrate the positive moments no matter how little they are and try and not let the bad moments get you down. (((Hugs)))

Kara13360 · September 2014

Sendings hugs - I'm sorry about your situation.

Kara13360 · September 2014

Kara13360 said:
Sendings hugs - I'm sorry about your situation.

Wow I wrote a lot more and it didn't post...

So I do not know details of what your son is or is not doing to show signs of autism but my nephew didn't talk til he was about 3. He is 7 now and fine. And my son still doesn't say words not wants to even imitate me when I speak. He isn't interested in people other than me and DH so he isn't social. My doctor said I could call EI but wasn't concerned. My family isn't worried either but I might call them just to see what happens

Chappy_jr · September 2014

Your heart sounds like it is breaking, for the future you imagined for your son, for the affection you long for from him, for all these things that your heart has every right to break and you have every right to cry about when you need to.

However, it is clear that your son is incredibly lucky to have you as his mother.

Early intervention is important because it can make such a difference (it seems like you're already seeing the differences). Your gut was telling you something was off and because of you, your son will be better off than if you had waited or been too embarrassed to admit it. Keep doing what you know is best.

DCKate · September 2014

If I could send this with wine, I would. You're being such a strong mama!

Jessie333 · September 2014

Double post...

mylittleladies1229 · September 2014

I'm so sorry that you are going through this. Give yourself permission to cry! You are a great mom for getting him into the therapy he needs so early. As a behavior analyst that worked with children on the spectrum I can tell you that the younger they are, the better. He may be able to make so much progress that he no longer needs therapy in a few years. Keep your head up momma, you are doing a wonderful job.

AshleyDehaven · September 2014

Updates:

We got him in to see his new pedi and she is completely wonderful. Her feeling is that he will eventually be diagnosed with ASD, but she did say that there has been more than one child she has gotten that feeling from who have wound up surprising her. She referred us to the ABA department of the Seattle Children's hospital to start the diagnostic process, because the wait list is 9 months long. So in about 9 months we'll be going to seattle to start formal testing and evaluations. In the mean time, EI has been established, and Dr. Putney has referred us to an audiology department at the local university that is doing great work with toddlers and speech therapy, and that would be covered either by our insurance or a sort of scholarship, and the trade of is that the information that gain, in learning what helps children like Thoren, will be used to develop new tools and guidelines to better help, and teach them in the future which i think is actually really amazing. There is also a referral being put in for intensive occupational therapy to help with feeding, and some sensory sensitivities.

So we have a plan. An intensive, full force, from every direction plan. It's amazing how much that relieves me, rather than stresses me out. I just want to do everything in my power to give him the best of everything..

Some bratty jerk of a kid at the mall yesterday asked me "What is he? Retarded?" when he was playing on a ride. We had been playing alone waiting for DH to come back, and the ride wasn't going or anything, he was just playing with the car's steering wheel, and these three rambunctious kids come screaming over. Thoren gets overwhelmed by children pretty fast, so i was worried he would have a melt down, but he just scooted further into the car, kept playing, but started babbling and making noise. Wasn't bothering anyone, and this jackass little kid.. Ugh. His mother was mortified and drug him off, but.. Geez.

But in happier news, Thoren has eaten 3 brand new foods in the last week which is HUGE, i am lucky to get one new one every few months, he said a new word "Guys!", and he has started coming up to me and DH specifically to give us hugs, so honestly, right now? Things are okay. I have bad moments. Really bad ones, where i wonder if the life he deserves is going to happen for him, but we are happy. He is wonderful, smart, and so, SO funny. He has a personality a mile wide and is my favorite person on the planet. AND as of Friday he is 25 pounds, and get this, THIRTY FREAKING FIVE INCHES TALL!!! He is one inch shy of 3 feet guys.. Hold me.. 97% percentile over all and very, very healthy, and happy.

ohiodoxiemama08 · September 2014

I am so happy for you that you have a plan! Testing seems like it can take forever to get into these days, which really stinks. A good friend of mine had the same wait for her daughter.

I can only imagine how frustrating all of this must be. And stupid kids making comments don't help. Just know that you're doing what's best for your son. The kids that I used to work with when I did ABA made humongous gains in such a short time, especially those who started services really young. Early Intervention is so so so important and helps so much. Just like your pedi said, I saw kids that ended up shocking me with their progress. Being proactive means that you're a great mama and doing everything you possibly can for your son.

Also congrats on all the strides he's making. And man is he tall!

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Not what i was expecting. ETA: Updates in thread.

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