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Kendrav4 · August 2014

Hello!

My name is Kendra and I have a 21 month old son who is being tested for autism. He was referred to a psychologist and we've done 2 of 4 evaluation sessions with her. We should be finished in 2 weeks at the end of August. I am currently a complete and total mess over this. I know a diagnosis isn't the end of the world but the entire process is heart breaking and waiting is killing me. I cry all the time and have no one to talk to about it, and just wish we would get an answer right now.

Is it ok to join here? And ask some questions? Or do I need to wait until we have a diagnosis?? Thank you!

Kendrav4 · August 2014

Thank you! I am such a mess waiting for the diagnosis that I don't know what I will so if he is diagnosed. I know in my heart he will be, and I am trying to prepare myself for that.

We are seeing a behavioral psychologist and we scheduled 4- 1 hour sessions with her. Do you have any idea after the last session it takes to get an official diagnosis? And will give us a treatment plan? I guess I am just wondering what happens after the diagnosis and where we go from there. She hasn't said Anything to us about it.

Also, how do you handle telling family and friends? My family is very anti doctors and I think they will just same that he's a kid and I am overreacting.

I know I am putting the cart before the horse, but I can't help but to think about how our lives will soon change if/when we receive that official diagnosis.

greyt00 · August 2014

I'm sorry that you need to be here, but welcome.

It was heartbreaking for me, too. My DS1 only had 1 eval (1.5 - 2 hours) with a pediatric neurologist and he was diagnosed with ASD on the spot, so I don't know what is going to happen with yours.

I told immediate family because we are very close and I needed their help. If you don't think family will understand, there is nothing wrong with not telling them anything right now. Tell them what you want when you want. I don't know the dynamics in your family, but if you don't see them all the time and aren't relying on them for help (in my case, my dad does a lot of driving DS1 to appointments), you can give them whatever version of the story you want. For a family that is "anti-doctor", I might approach it like this: Do not tell them a diagnosis, just tell them -- if needed -- how you are trying to help your son. For example, if speech therapy is recommended, you could say he has a speech delay and will be going to speech therapy. You could simply leave it at that.

I have only told a few friends. I have 1 friend that I mostly vent to. Her younger brother had some spectrum type behaviors and her son has dyspraxia so she is very understanding. I've actually gone out of my way to avoid revealing certain things to some people, for the time being. Basically, if they're not going to be supportive, or if you don't think you need their support, you don't have to tell them anything. You don't need to deal with other people's problems with this. You have enough going on.

Junebug060609 · August 2014

Welcome. I was in your shoes last year, 21 month old and everything. Had about a six month span where he was just considered "at risk" for asd...six months or torture, but that also allowed me to adjust to the idea

MirandaHobbes · August 2014

Kendrav4 said:

Thank you! I am such a mess waiting for the diagnosis that I don't know what I will so if he is diagnosed. I know in my heart he will be, and I am trying to prepare myself for that. We are seeing a behavioral psychologist and we scheduled 4- 1 hour sessions with her. Do you have any idea after the last session it takes to get an official diagnosis? And will give us a treatment plan? I guess I am just wondering what happens after the diagnosis and where we go from there. She hasn't said Anything to us about it.

Hang in there. It gets better. There are many of us ASD moms on this boards and we've all been through this. You'll get through it too, and some days will be much better than others. Good for you for getting

My son was diagnosed by a developmental pedi when he was 3 (and unofficially by the school district when he was 19 months). The dev. pedi had just two appointments: the 3 hour eval and then the 1 hour eval results. At the results appointment he gave us recommendations for going forward, and referrals. Coicidentally, we didn't go the psych route until recently. DS is 6, entering 1st grade and is exhibiting a lot of anxiety and emotional regulation issues. I just had the first of 4 psych eval appointments. The MHP I met with explained that they use 4 appointments with undiagnosed children but since we already have a diagnosis it is being cut down to 3. The first was intake (without DS), the second is the 3 hour eval (with DS) and the last is the results and mapping out the therapy plan. Your provider should make this all very clear to you, if you don't understand, make sure you ask. The eval process seems to vary considerably based on where you go.

Also, how do you handle telling family and friends? My family is very anti doctors and I think they will just same that he's a kid and I am overreacting. I know I am putting the cart before the horse, but I can't help but to think about how our lives will soon change if/when we receive that official diagnosis.

A lot of us have had this problem too. It can really be a drag when your family/friends aren't on board. After 4 years mine are only marginally on board. I literally did not tell anyone but my BFF for a whole year. The school district had called him "at-risk for ASD" and I didn't like the wishy-washy sound of that. So I opted to wait and save myself the hassle of telling people. It was still hard going through all of that alone. When we had an actual diagnosis (pdd-nos) I did tell family but like yours, they were pretty dismissive. I had to learn to keep my thoughts to myself or I'd go crazy. That said, they are getting better. My parents offer to watch DS for an entire week each summer. As he has gotten older his quirks are more pronounced and they can't really ignore them. They're starting to see that this is what autism looks like (and it's different for every kid!).

As far as how your life will change, I personally didn't find that much changed at all, other than of course the new course of therapies we had to attend to. Looking back, our lives were better because the therapies are what really opened up my son and got him speaking and engaging more. Of course, this is easy to say in hindsight. Those were dark times when he was first diagnosed. Once my son turned 4 and started maturing enough that we could do "normal" family stuff like go to restaurants and camping and roller skating and whatnot I felt a huge sense of relief.

Hiccup15 · August 2014

Welcome! This board has been a wealth of information for me. What has helped me get through this time (waiting for a diagnosis for DS1) is realizing that having a diagnosis will not change who he is. He is the quirky, sensitive kid, that also has the biggest heart I ever seen. If anything he will actually be able to get help for things he struggles with.

Also I haven't discussed much with friends and family. DS2 has many things going on with him and DH and I have found anytime we mention something to our friends or family it doesn't go over to well. My side of the family is in denial that anything is wrong. DH's side thinks we are exaggerating and we are the ones that have caused the struggles (they also live in Europe and have only seen the boys twice)

If I mention something to my closest friends, I notice they don't know how to react and then end up saying something like oh I'm sure he is fine, or well so and so kid does the same thing ect... So I have realized I would rather just not mention anything. If they ask questions or bring something up i'll answer.

I feel like it's a fine line for us. I want our boys to have the choice to tell if they want. I try to be careful in what I mention to their friend's parents. I know once their diagnosis is out there in their "friend world" we can't really take it back.

Kendrav4 · August 2014

Thank you for all of your responses and support. At our next appointment I will ask the psychologist when we will get the results so that's one less thing I have to stress over. I never imagined I would ever be faced with this situation and I'm glad this group is here for support. I look forward go getting to know everyone!

Micelle78 · August 2014

Micelle78 · August 2014

Micelle78 · August 2014

Ok sorry, not sure why its showing up blank?

Anyway, WELCOME!

You are allowed to feel what you do. having anyone analyze your child is scary and very emotional. We do not have an actual dx, but my son was evaluated by the school district and given an "atrisk" and we have private therapies so I went through evals for hearing, speech, OT, and vision too.

It gets easier but I go in and out of mild depression myself. I will feel like I am doing the right things, DS is always progressing and then BAM! something triggers a feeling of hopelessness, guilt, or jealousy of another child that can do something that DS can't (althought this was mostly during the first year and its been over 2 now). I will feel very sad for a short amount of time (hour, day, week) and then pull myself up again. I should have probably had therapy for my marriage or myself but keep making the excuse that I am waist deep in therapy for DS, so how will I add that without more stress? I know a lot of others can relate to that.

There are two things that continue to be hard to deal with for me. One is in-laws that question my parenting style and I know it is mostly because they still think of DS as a typical child. So they drop hints that maybe he would eat if he is hungry- since we do feeding therapy for limited diet, he would be potty trained if I just did XYZ, he would do this or that etc. It gets old and I can usually ignore it.

They are starting to show signs of understanding and then will say something completely stupid. They only see him once or twice a month. They used to watch him two evenings a week while I taught violin lessons after work at my house. I had to cut back because it was just too much working when he really needed a mom. This became more obvious the more clear his disorder has become. So her perspective of him is from when he was little and you could easily blame the speech delay and odd behaviors on being little. He just turned 4 in June.

The other thing I struggle with is the unknown for the future. It is what nags at my mind at night and causes anxiety at times. Please use this board to vent, ask questions, and share successes. There are awesome people on this board that have been/are in your shoes

Unknown · August 2014

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Kendrav4 · August 2014

Micelle78 said:
Ok sorry, not sure why its showing up blank?

Anyway, WELCOME!

You are allowed to feel what you do. having anyone analyze your child is scary and very emotional. We do not have an actual dx, but my son was evaluated by the school district and given an "atrisk" and we have private therapies so I went through evals for hearing, speech, OT, and vision too.

It gets easier but I go in and out of mild depression myself. I will feel like I am doing the right things, DS is always progressing and then BAM! something triggers a feeling of hopelessness, guilt, or jealousy of another child that can do something that DS can't (althought this was mostly during the first year and its been over 2 now). I will feel very sad for a short amount of time (hour, day, week) and then pull myself up again. I should have probably had therapy for my marriage or myself but keep making the excuse that I am waist deep in therapy for DS, so how will I add that without more stress? I know a lot of others can relate to that.

There are two things that continue to be hard to deal with for me. One is in-laws that question my parenting style and I know it is mostly because they still think of DS as a typical child. So they drop hints that maybe he would eat if he is hungry- since we do feeding therapy for limited diet, he would be potty trained if I just did XYZ, he would do this or that etc. It gets old and I can usually ignore it.

They are starting to show signs of understanding and then will say something completely stupid. They only see him once or twice a month. They used to watch him two evenings a week while I taught violin lessons after work at my house. I had to cut back because it was just too much working when he really needed a mom. This became more obvious the more clear his disorder has become. So her perspective of him is from when he was little and you could easily blame the speech delay and odd behaviors on being little. He just turned 4 in June.

The other thing I struggle with is the unknown for the future. It is what nags at my mind at night and causes anxiety at times. Please use this board to vent, ask questions, and share successes. There are awesome people on this board that have been/are in your shoes

The future scares the crap out of me. I wonder if he will have a hard time making friends, or will he get made fun of, will his siblings be embarrassed that he is "different" or will he be able to play sports and do other "normal" kid things. If its this hard on me and I don't even have a diagnosis yet I can only imagine how much of a wreck I will be when he is diagnosed. I rely believe in my heart that he will be, and I wonder if he'll be able to be happy and enjoy life, or if his diagnosis will make everything that much more difficult for him.

Junebug060609 · August 2014

Micelle78 said:
It gets easier but I go in and out of mild depression myself; I will feel like I am doing the right things, DS is always progressing and then BAM! something triggers a feeling of hopelessness, guilt, or jealousy of another child that can do something that DS can't (althought this was mostly during the first year and its been over 2 now). I will feel very sad for a short amount of time (hour, day, week) and then pull myself up.

The other thing I struggle with is the unknown for the future. It is what nags at my mind at night and causes anxiety at times. Please use this board to vent, ask questions, and share successes. There are awesome people on this board that have been/are in your shoes

Pardon my trimming the quote. I just wanted to say that these two things apply to me as well, minus the mild depression part. I've come here on the hard days (usually ones loaded with stimming or ones where his differences are glaring) on many occasions. It's hard to see.

I can't even talk about the future with DS. Like up until early elementary, sure (he's almost 3 now), but tween years, high school, adulthood...it overwhelms me. I just can't go there beyond doing what we can to get financials in good shape and looking out for his education and therapies in hopes that will help him down the road.

Just wanted to send you hugs. Been thinking about you today since I was in your shoes a year ago. It gets better. There are still hard times, but overall it gets better.

My DH used to remind me when I was struggling at first that our son is still the same boy he was all along, we just know more now and can help him. That always helped me to hear.

Kendrav4 · August 2014

Junebug060609 said:

Micelle78 said:
It gets easier but I go in and out of mild depression myself; I will feel like I am doing the right things, DS is always progressing and then BAM! something triggers a feeling of hopelessness, guilt, or jealousy of another child that can do something that DS can't (althought this was mostly during the first year and its been over 2 now). I will feel very sad for a short amount of time (hour, day, week) and then pull myself up.

The other thing I struggle with is the unknown for the future. It is what nags at my mind at night and causes anxiety at times. Please use this board to vent, ask questions, and share successes. There are awesome people on this board that have been/are in your shoes
Pardon my trimming the quote. I just wanted to say that these two things apply to me as well, minus the mild depression part. I've come here on the hard days (usually ones loaded with stimming or ones where his differences are glaring) on many occasions. It's hard to see.

I can't even talk about the future with DS. Like up until early elementary, sure (he's almost 3 now), but tween years, high school, adulthood...it overwhelms me. I just can't go there beyond doing what we can to get financials in good shape and looking out for his education and therapies in hopes that will help him down the road.

Just wanted to send you hugs. Been thinking about you today since I was in your shoes a year ago. It gets better. There are still hard times, but overall it gets better.

My DH used to remind me when I was struggling at first that our son is still the same boy he was all along, we just know more now and can help him. That always helped me to hear.

Your DH is absolutely right! And it helps to look at it that way! I'm glad to hear that it gets better, because I can't imagine being this sad and down about it all the time

it does come in waves, but today was especially bad and I dont know why

I appreciate everyone's response! In so glad I found this board

bumpuser511563 · August 2014

You are welcome here! Please stay.

Some of us on here don't have dx and some of us do have dx.

We started off here on this message board with just therapies and later we got a dx when DS turned 3 1/2 with PDD-NOS and 4 with ASD.

Kendrav4 · August 2014

DC2London said:
Welcome! Of course you can join! Many parents come here before they have even seen a doctor, much less secured a diagnosis. The waiting lists to see someone can be very long and it helped me so much to read and share on this board while we waited.

Our process was a bit different because we started with a diagnosis, then sought behavioral psych. We actually went first to our school district for testing and managed to complete the entire testing and IEP process while waiting to see a developmental pedi, and our medical diagnoses came after we already had an IEP and educational "label" in place. Are you seeing a developmental pedi (or will you)? What kind of therapies is the behavioral psych recommending or providing?

The diagnosis can be scary and I totally understand that anxiety while waiting for it. Allow yourself to feel what you feel and honor your emotions as they come, but try to remember that labels change nothing about your child. He is still the exact same little boy, just with a few words on a paper that will allow him to get the help he needs. Hugs to you.

Thank you! I'm not sure what therapies we will do or who we will see. Our pedi referred is to a psychologist who specializes in autism after my sons 18 month appointment, so seeing her is our first step. Next week she will give is a diagnosis and a treatment plan, so I guess we will go from there and do whatever she recommends.

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