It's been a year since Dx - do you feel like you have PTSD?

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My son wasn't diagnosed with HFA until his 4th birthday. I could kick myself, but in retrospect, it was hard to see. He met all his language milestones - babbling, single words, words together. He had sentences of 5-6 words long at 3. He taught himself to read, write, do math by 3. We thought he was just really smart. He is loving, warm, receptive. He doesn't have a big problem with transitions. We just noticed he was unable to have a conversation around 3. And then he played alone a lot - but not always. He didn't really know what to say to peers. He didn't ask a lot of questions. Plus we lived abroad and although we spoke English to him, he went to school in a different language. "He is a boy. His birthday is at the end of the year. He is young. He is a foreigner." We had a lot of reasons to believe he was a late bloomer.

So finally we found ourselves in a speech pathologist's office (after our pediatrician insisted at age 3 he was fine) with her telling us he has a severe speech delay and that he should see someone about "ruling out ASD". How 2 highly educated parents missed the cues, is beyond me now.

So we get the Dx and decide, in that moment, that we must simply move home to Canada after 12 years of being away. Our son needs to be in English. He needs help and understanding in school. There was no other answer.

It was a whirlwind, seeking schools, therapy, supports, getting on the right lists, getting a home all while living abroad. Leaving great friends and the only home my kids had ever known, I moved with my son and his younger sister first and my husband came 4 months later. We lived with the inlaws until the house was ready. Ugh.

It is now 6 months later. My son is settled in ABA therapy and OT (all of which we pay for privately - double ugh!). The kindergarten is great - mostly. He's taking gymnastics, hip hop and swimming. I find him play dates. I smooth things out with the other mothers at school when his behaviour is quirky....and I try not to forget about his 3 year old sister. Of course she has her activities and friendships... And in my free time, I take classes about ASD, I read books and I try to find my own friends in this city that is 'home' but is still foreign to me. But suddenly I feel exhausted. Like lay on the couch and don't move for 3 hours - exhausted.

How about you?

I have PTSD but not from my son's ASD Dx, but that's a story for a totally differnt forum. Welcome to WP!

Don't beat yourself up about not seeing the signs earlier. It sounds like he is in that part of the spectrum that is difficult to identify at such a youg age. You know now and are taking the right steps. There isn't much you could have done differntly.

I personally seem to have a day or two every few months where I have that "can't get out of bed" feeling. For me, when I just succumb to that, I am back on my feet in a day or two at the most. If you find yourself feeling this way on a regular basis, you should definitely talk to a doc, psych or a counselor. You have been through a lot with your son's Dx and the move. Culture change, missing your friends, living with your inlaws for 4 months (I would probably rather sleep under a bridge than live with my inlaws). These are all things that understandably have taken a toll on you. I suggest you put down the ASD and parenting books for a little while and read something you just enjoy and do something just for you!

ASD's weren't really on very many people's radars when my son was young (he is 14 now), so I haven't thought that much about the fact that we were clueless until he was 7. I guess at the time it did hit me pretty hard, all the "wows, I should have picked up on X not being normal," but I always figured no one could have put their finger on exactly what it all meant because it can be really hard to be sure when high functioning kids are young. I remember being mostly grateful that now there was a game plan for dealing with the issues that were cropping up, instead of people telling me I must be parenting him wrong, or that he wasn't trying hard enough, etc.

The process of getting a diagnosis and an IEP was all pretty intense, and it is really hard to sit in a meeting and hear about all the objective ways your amazing child is developmentally behind. I don't think anything had prepared me for that; from the day he was born all I had ever heard was how smart he must be.

We didn't have to turn our lives upset down, and I can't imagine what all that has been like for you. I think you are finally getting a chance to breathe, something you've probably missed in all this process. Until now. It's when you sit down to breathe that you finally figure out your emotions, I think.

My son is doing great, by the way. We're comfortable he'll be able to stand on his own two feet as an adult, maybe even be lucky enough to have a brilliant career (on that, it's the same open ended question you have with any child you raise). It feels like we've come out on the other side, and I think we've been very lucky to have that sense, especially with him still pretty young. I know things can change, but we've seen pay off for the digging in we've done, and it's nice.

Last edited by DW_a_mom on 05 Jan 2012, 11:18 pm, edited 2 times in total.

ASDs were barely acknowledged when I was growing up; a kid was either a sociable bully, or he was a victim; and we all "know" that the only victims in the world are those who "ask for it" ...

Please note: I AM NOT A PARENT. I am a person who has lived on the spectrum and generally am a pretty good guy.

A local university has an ABA program and every month or so, they give a free hour and a half lecture on Saturday. I was quite unimpressed. They showed one video of what I guess is supposed to be a model session.

"Hi, I'm Erin. I'm Toby. Good Job. Give me five! Hi, I'm Erin. I'm Toby. Good Job. Give me five!"

My God, they're teaching the kids small looping. Maybe this is appropriate for lower functioning kids, but I question even that. They are doing repeated trials of introductions. But it is really a bad meta-lesson, so to speak. If the kid does anything like this in real life, he or she will really stick out as a kid who's different. Plus, they're kind of trying to perfectionize social skills, and that's not such a good idea either.

You might want to ask if you can observe an ABA session and decide for yourself whether this is likely to help your son or not.

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As a kid, I was effective as I low-key leader. Organizing creative tag games and picnics at ages 7, 8, or 9. I could have used just a little support from my parents regarding this, without overdoing it. Being a low-key leader and just matter-of-factly asking people if they want to participate in an activity are more straightforward and satisfying skills than the more nebulous skills of followship.

When I was 9 after we had moved, my Dad said, "Go out and make some friends." I way too much took this to heart and tried to 'excel' just like I 'excelled' at school and received rewards. It's so much more about building a team, being a member of a team, contributing to a team. That's so much more satisfying.

I regained my rhythm and was a leader later on. In fact, I've been a retail manager on three separate occasions, more if I count informally. The last couple of years has been a low ebb.

This sounds like the post I will be writing a year from now! I am living abroad now (Japan) and both my kids were born here.

We had our son diagnosed around age three and the doctor strongly recommended that he be immersed in an English-only environment since we only speak English at home and English is his "mother toungue." We tried working with him at home but it doesn't seem to be enough, and services here are pretty much non-existant, especially anything in English.

My son is three and a half now and just starting to use full sentences, though it's only a couple of scripted things like "I want (whatever.)" Zero conversation. Knows lots of words and is teaching himself to read, just like your son. Fine with parents but totally ignores other kids.

How has your soon been doing since you returned to Canada? Did he have a noticable response to suddenly being in an English-only environment?

With all those changes in your life in the last year, you certainly have reason to feel shell-shocked! Pat yourself on the back for surviving so far.

With that type of language delay, to have caught HFA or AS at 4 years old is actually quite early. Our DS6 was also diagnosed with AS a year ago, when he was 5. He had a minor language delay at 2.5 that was resolved with six months of speech therapy. He was evaluated by the Regional Center at 31 months, and I figure if their psychologist and the director of the speech therapy clinic (which specializes in autism) both missed it, how was I to have caught his AS?

While we haven't had the major relocation that you've had, our first year with AS has been very hectic:

From Jan-Jun, DS had preschool 3 mornings a week, followed by various therapies 3 afternoons a week (speech, OT, social skills). I attempted to homeschool him at the kindergarten level on Tuesdays, and on Thursdays he attended an enrichment class provided by the homeschool charter. I requested an IEP evaluation on Jan 3, and it took us until June 1 to get it finalized (the homeschool charter was very difficult to work with for scheduleing meetings and getting support for the on-site class). DS had lots of meltdowns during the enrichment class.

Summer was consumed with preschool summer session, social skills "camp" twice a week, and more speech and OT.

DS started kindergarten "for real" in September, and so far I've counted 7 major incidents, including throwing scissors at an aid, throwing a soccer ball at the resource teacher's head, stabbingthe speech therapist's foot with a thumbtack, and breaking another child's glasses. His teacher reports that he is getting escalated pretty much daily, and they called in the district autism support staff to do a Functional Behavioral Analysis -- we'll have an IEP meeting about it in a couple of weeks.

Meanwhile, we've found a very good developmental pediatrician who has started DS on ADHD meds, which have been helpful but still need some tuning.

All the IEP meetings, therapy appts, doctor's appts, and discussions with the teacher, plus the 25 minute school commute, are a real drain on my time and energy. I didn't realize how hard it was until winter break started and I didn't have to do any of it for 4 weeks.

Thank you all for your responses. I think I was having a similar reaction to Zette below, since it's winter break and suddenly we have free time from school and therapy and I realize how tired I have been from the accumulation of change, stress, etc.

To AardvarkGoodSwimmer, I think your concerns would be warranted for a traditional ABA program. I do observe his sessions and speak to his therapists daily. Our centre is excellent and they tailor his program for his level, intelligence and age. He works mostly on social skills, not in a rote way, but in a more natural environment way; he is quick to understand and generalize lessons. He works on gross and fine motor activities that you could find in a regular kindergarten but gets more attention as it's 1:1 and they use ABA principles to help him along (mostly positive reinforcement). He plays board games and other social games like Tag etc. with some of the other kids who are at his level to learn social skills. When they say it's ABA, it's not at the table for much of the sessions, but they use positive reinforcement and ABA principles to help him with his challenges. ABA has come a long way.

To Wreck-Gar, good luck with your transition home, if that's what you decide. My son is thrilled to be in English only. He is doing very well, as he is academically stronger than the other kids in many things although socially farther behind. Only the teacher, resource teacher and principal know his Dx. As far as the children know, he's just a quirky kid. I have told only one other mother, who we see socially almost every day. She's supportive and her kid seeks out mine to play with. Even though it was a lot of upheaval and I would have preferred to continue our happy life in France, it was the only decision we could make given our son's situation. So it's worked out.

Thanks for the update. I'm glad to know he is doing well. We've already decided to go back to the states, we never really intended to settle here permanently anyway. I've been doing some serious job hunting back home since the summer and if all goes smoothly we should be back home by February at the latest.

I like it here but I think it's really a very difficult place for a foreigner to raise a family, regardless of having a kid with disabilities. Especially considering the earthquake and following events of 3-11...many many foreigners I know are planning to leave or have already left.

After my son's dx it was a whirlwind also. He had been to many doctors prior to getting a proper dx. When I got the right dx I went full speed ahead into meds, therapies, reading books, working with him, working with the school, etc...It was crazy. When things started to stabalize and life slowly returned to normal, the exhaustion hit. I'd zone out. I did feel like I had PTSD for a long time. Everytime he would walk into the room, I'd freeze, preparing for the rage or tantrum or whatever. But he was stable and it didn't happen. I'd sit there totally exhausted feeling paralyzed. I couldn't figure out why I didn't bounce back like he did. I was still on edge, more exhausted than I was during the whirlwind, and it took me longer to recover than it did for him. It was over a year after the dx before my normal returned.