Huge Improvement and Burnout, mainstream family

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Hi,Parents.

I am suffering a lot of stress and anxiety at the moment.

My son's condition has been hugely improved since diagnosis as ASD non-verbal and severe GDD 3.5 years ago.

Last week, my son's psychologist finally acknowledged that my son is now AS and advised me to buy and read Tony Attwood's book.

I therapied a lot for past 4 years, We started off teaching my son joint attentions for almost 1 year in the begining, I have to create a social story for now Aspie son.

I learned a lot about ASD therapies and child development in the past 3.5 years but now it is becoming too much.

Fortunately, he is socially doing OK at mainstream, Academically, very well. now I need to push school to provide accommodation in his math skills because he is too advanced in math.

Also, I need to learn proactively about the issue as well.

I am very aware of what I should be doing for my son's best interest but I am not able to put them together anymore because I feel I am so exhausted.

How are you coping with your overwhelming responsibilities for fulfilling your child's needs in his/her therapies? Do you ignore some bits and get over it?

2. I also have a lot of difficulties with dealing with parents of mainstream kids. Some specialist suggested my sn will be sub clinical in his adult life.I am hesitant to tell parents or general public that my sons AS.

This double life like CIA agent is really driving me insane. Its full on therapy and autism mode in my real life but pretending like we are like any average family.

My son never went to Mainstream before. At Early intervention centers, I was feeling we were always supported by staffs and other parents. I know some of his current classmates has ASD but they don't want to talk to me probably they don't want disclose their kids conditions.

I feel so alone at his school, I made some parents friends but I don't know what to do when I am with them and my son together because my son is so different from other kids.

What do you do about parents with NT kids? Past 6 years I was in parallel world. now I am feeling a lot of culture shock.

There is a lot here so I may not address everything in one go. Yes, it can be overwhelming and you may need to start making time for yourself as a concentrated effort. Make in an assignment like it needs to be done because based on your tone, I bet it does. You sound way too hard on yourself.

We are very low-intervention, so keep that particular bias in mind when I say that you might want to examine what interventions you are doing and gauge what kind of ROI you are getting on each one from a time/effort standpoint.

Sometimes even if something is paid for, it is not worth the time/effort investment if your child is not getting anything out of it. Make sure you understand why you are doing every therapy you are pursuing and make sure it is a need and not just something you are doing because you feel you have to do everything that is available. There has to be an actual need--and it has to be worth it. Sometimes you can do the same thing at home through more recreational and targeted methods depending on what skills you are working on.

As far a socializing with the NT moms at school? Ha! Luckily for me I am not especially social. Unfortunately for you, it seems like you need a social outlet. I would suggest trying to meet people outside the school. If your make time for yourself activity involves socializing with others that might be a way. Or think outside the box--maybe if you are married, your husband can meet people at work and you can have couple friends or something?

There are some people who manage the traditional mommy socializing thing at school, but I suspect it requires a lot of advanced social skills, and depends on the mommies' attitudes towards your child and how well your child blends in. Do they pity him? Do they actually really want their kids to play with him? etc.

All that baggage is going to come into play. If they like him, or tolerate him and like you, well enough, having mommy friends at school can potentially help your child because you can create a network of people to look out for your kid. I know there are posters here who have managed it, but the stars have to align. I really don't enjoy mommy networking anyway, so for me it was more the fact that I could not network to help my son -- rather than missing out on mommy social time.

Have you considered coming out of the ASD parent closet, so to speak? Maybe with a select one or two parent friends? I ask because both of my 6 yr olds are on the spectrum. Depending on the day, they can present as mostly typical or very atypical kids. And I have to intervene more than the average parent at NT majority events. Living the double ife was like ignoring a very large elephant on the room. So, I just started dropping it into the conversation as appropriate. "I is getting close to a meltdown, overloaded you know, so we're going to get out of here early". Or "L has speech therapy at that time, so maybe we can get together afterwards?" Or even,"We have an autism re-eval coming up, so I want to make sure they're rested".

It was important for my sanity for me to try to not feel like I was living a lie or somehow projecting that I was ashamed of them. And I realized that because I don't like to lie, ignoring the elephant in the room led my body language to read like I was ashamed, which I was, but of myself for being afraid to just talk about my children in a normal way. If they were limping because of a torn muscle, I'd just say it. So why was I so afraid to talk about this?

I live in MA which is pretty progressive overall, and so far the reactions have been just fine. My boys still get invited to the bday parties, and lots of parents have shared their own issues with me in return, including ASD, ADHD, ODD, and one that made me laugh was when a parent confidentially whispered that her daughter was seeing an OT and ST for her stutter. In my head I was thinking, gee, that's your big secret?! ! Lol!

But, it made me feel less alone. And afterwards I never felt like I had to explain why we were leaving early, or why my kids wouldn't eat any of the food that the hosts had graciously provided, or any number of the "not-quite-typical" behaviors that they tend to display.

So maybe try to merge the two lives into one? Do you think that that could possible work for you? Or are there big challenges to doing this in your world?

**
Edited for some unfortunate auto-correct.

I am very happy to hear things have gone well for your son so far. Be proud of what you have accomplished, and stay ready for the next hurdle.

I think ... things like worrying about if your child is as far advanced on math as he could be are the types of things you can cross off your list. I, personally, believe that a child needs a happy and healthy mom with the energy to meet his needs as they arise more than he does advanced math. So choices like that were easy for me. When it got difficult was when I saw a strong need with him and wasn't sure I had the energy to do what it took to help with it. Frequently, I compromised and moved on with "good enough." My son is 20 and thriving, so I must have done OK; sometimes we have to be willing to be the "good enough" parent instead of the "best" parent.

How much to tell and how to work the social game at school varies a lot by location. I, personally, favor being open with things like "we have an appointment," and "sounds can overwhelm him," while only giving the diagnosis (ASD) to very close families my son is spending a lot of time with (before a one on one sleepover in someone else's home, for example). I volunteered a LOT at the school and that served me and my son well socially, but that varies as well. My son did have a lot of desire to be social and is outgoing; people have always "liked" him when they meet him, it is later as more quirks get revealed that they can develop issues. Living in a community that is very accepting of all sorts of differences really helped with that. I, myself, am not the world's best socially but I have a lot of skills that make me a welcomed volunteer, and everyone is going to "like" you when you are doing so much for the school. Or, at least, that is true in our community. I have a very large acquaintance circle but don't really develop best friends; that is just who I am and I am adjusted to it.

Everyone's journey on both these points is going to be different and I wish you the best of luck finding the right path for you and your wonderful son.

Well you are way ahead of me. I am new to the game with my less than 2 year old. I would like to point out what a fantastic job you have done with you child. I can commiserate with you about the pressure level too. All I can offer you is the phrase make sure you put your oxygen mask on before assisting others. It is absolutely okay to take a break to get yourself in order because running yourself into the ground benefits no one. Can you possibly work with or hire an advocate for your child to remove some of the pressure from you?

Hi,Wise Mums. Thank you so much for your advise. I feel really supported here by you. You understand what I have been gone though. I know counsellor or psychologist are doing their best (I see them sometimes due to stress) but they never experienced this or similar. I don't get good advise from them.

I feel too I am overdoing therapies. Considering my son now goes to school full time, We do not have much time for therapies. He is tired after school but as long as we go all the necessary things such as OT, ST, therapy home work come in. So I guess, I should off load some work or reducing therapy hours at OT, ST altogether.

I found mainstream setting very challenging and I feel really incompetent in this new field as mum because no matter how hard I work and I am careful with everything, My son will never get compatible with his classmates. I just want him to be happy to go to school and I want him to feel included and supported. I don't want him to feel he is not good enough and I don't want him to be stressed. My stress level went so high since his pre-K school started.

Mainstream school setting caters for typically developing children and Currently, I am talking to before school care provider to accommodate my son for 1.5 hours per week placement morning but I found out they leave 6 years old children (or younger) outside classroom for a couple of minutes before morning bell goes off and they say my son will be fine.. They don't want to make change their routine for my son. I really need to push them to make sure he won't be unattended for even 1 second, this kind of small battles compound and they are not easy as I come from non-English speaking background.

In regard of Socializing with mainstream mums, Thank you so much for your advises. Its really good to know that some people choose to be not social.. I think it’s completely valid and I am not so social actually. For me it takes time to be accepted by crowed. Once people know I am OK, I start forming friendship with all kinds of people. I am a bit different from crowed, I don't follow majority, or trend and I do look nerdy a bit too. For that reasons, I don't initiate friendship or conversation often. I am not very social person too. My son’s dad and myself separated about 1.5 years ago. I am single mother on welfare.

Like, pddtwinmom yourself, There are some mums with advanced social skills. I think you have them, pddtwinmom..

My son is extroverted but his pragmatic language is really hopeless and his restricted interest is quite severe. Children in his classroom are still not aware of the difference because of their age but I believe if we spend more time with other mums and children altogether, they will definitely know my son is very different soon or later. I have set my mind that I am going to tell some mums about my son's ASD if we spend more time together. It will be truly like an elephant in the room if I don't do that.
If those mums do not accept my son and myself after revealing my son's condition, I probably will think "I did what I should do and Its ok".

My son is too accepted by his classmates right now and he is very likable but I think too my son has not revealed real him yet to his classmates.

In Australia, I guess all states and cities are pretty much the same except ACT. I could see people in Canberra (Capital city) are different, They are mostly public servant (federal). We are in different state, My son goes to public school in low socio-economic area (except for some in middle class). I feel personally my son will be better off in catholic school because parents and children are more accepting differences in people.I really don't see bad side of his school yet.

I think Volunteering for school is good idea.
I feel many people don't know about special education in mainstream schools in this state. I never want my son to be fully mainstreamed at this level because it is too hard for him. However, I think some people might be thinking we parents want our children in mainstream classroom all the time that is why they are mainstreamed. We did not have choice to put our children in special ed classroom. All states schools have inclusive classrooms. I am just guessing here but I think we are kind of isolated from school communities so showing good intentions by volunteering is really good idea.

Thank you for all your advise

Hi, byathread.

Thank you for your advise and kind words.

I take your good advise and I am thinking hiring therapy assistant doing my therapy homework. We receive government funding which to be used for therapies and small things. I really feel my mental fatigue now and I feel it is ok to pass it to someone like OT students.

I understand you just started your journey with your baby child recently. I guess You must have been very proactive because your child has received such an early diagnosis. My son received diagnosis at 2 years 8 months of age. It cannot be any earlier in Australia, I see many children receive late diagnosis even there are speech development delays present with them in Australia. I must say earlier children start early intervention, they are likely to reach closer to their potential. I started taking my son to special needs playgroup when he was 1.5. By the time he received diagnosis before age 3, he could sit down at table for snack time and group time in the playgroup.

I think all fellow mums/members including me are happy to help in this forum if you have any questions. Good Luck.

About NTs and school socializing...

My DD elementary school had the deal if you brought invites to school, everyone had to get one.

Great! Everyone is included.

So the mom who is a little less thrilled about your kid will eat the $10/kid charge because it's a bigger hassle sending out individual invites.

Where the rubber meets the road is middle school. There is no such rule about invites. Teens and Tweens can act like rat face little creeps. So the kid that was included is now on the outside looking in.

My DD has a friend with ASD, and it's brutal now. Girls invite who THEY want, and not who mom or the school says.

We invited you because we had to, not because we wanted to. That is a hard thing to swallow.

I wouldn't worry about socializing. You can always set up 1 to 1 play dates with a good friend of his. DD elementary school sort of had a force inclusiveness. Everyone more or less played "nice" because that was expected. Middle school is the bigger hassle with kids morphing into hormonal teens and tweens, and they don't want to be told anything. Lol..

As an NT, I had to deal with Mean Girl, social climbing, gossipy helicopter moms. It's not worth the drama or the hassle.

I actual miss elementary school. Middle school is such a bear with the homework, expectations, drama and hormones. I want the time back where all was expected was learn your colors and play nice. (grin)

If I'm reading this right, you're poured your heart and soul and every breath into your son for the past few years and gotten great results. Thank [God] for you. I commend you.

Now you HAVE TO back off a little and take care of YOURSELF.

Phase out some of the interventions and supports that have gotten him this far and see what happens. Give him a chance to be a "normal abnormal kid." It's going to be hard to learn because everything has been "Work, worry, modify, intervene." And you're not going to ALL THE WAY QUIT, because I gather he's still quite young.

Don't worry too much about math-- he's ahead of the curve, school will figure that out, let him work as he likes if he's meeting standards. Don't worry too much about socializing either-- let him find a few people who like him and accept him because they like him and accept him, not because they're being kind because of his "issues".

You'll be around to supply guidance, and increase interventions again if need be. You'll actually be MORE able to do that if you give yourself time to take care of you and enjoy life when things are going this well-- and THAT'S IMPORTANT.

Because-- I'm subclinical when I'm not highly anxious or depressed. Subclinical is still autistic. And it took a long time to get here, a long time of progress and backsliding, one step up and two steps back, and I don't think I would have made it without the patience and presence of people like my Dad. Give yourself time to rest and relax and take care of you. Because this is an endurance race.

And yes-- If othe parents don't accept him, well, it hurts but-- You have gotten rid of people who aren't worth your time and energy or his. Good lesson for an autistic to learn young.

Some will. Some always will. Trust me-- IDK if it's a function of having some autistic genes and an autistic mum themselves and therefore seeking out what's familiar or what, but my kids seem to have a magnet for befriending ASD kids. And OK, I'm biased, I'm partial to my "tribe," but they're my favorite ones of everyone my kids drag home.

Thank you for your messages.

Congratulations on doing the right things for your child! Acceptance is i think the number one factor..
I have no children of my own but did teach sports sometime back at a private school. Your son only has a label to help explain some things. In essence everyone is different and at that age societies influence will not be too profound on him.. Parents are just another personality subject. There will always be some that praise their own child and complain about others no matter what spectrum one is on. Maybe not tell people as people have quit a narrow view of the spectrum and i find parents can be pretty arrogant or some might even use it as a fuel for gossip... It sounds like he is doing well! As far as mathematics goes, i believe Tony Attwood suggests skipping what they are generally taught and going straight to geometry and trigonometry.. As they will be bored very easily with the fundamental basics. Maybe have a word with the headmaster about this and see if some accommodation can be made so as your son can thrive... I dont know he may not like Trig but is worth a go

Dont let the pressures of other parents get to you.You know your son better than anyone and sometimes by keeping it simple and not mentioned the spectrum can be better than having to explain things constantly to people that will likely be ignorant. But that can be left to your good judgment
Also Einstein failed math until he was left for his own devises. As he loosely mentioned, you cannot teach an elephant to climb a tree! The Schooling system is in effect designed for one single mind set and does not accommodate different mindsets with different learning patterns. If the school cant help then maybe look for some outside school tutoring in what does interest your son?

Sorry, not much help, however i wish you all the best!

Middle school is Hell for EVERYBODY.

It's just super-miserable for an autistic kid. EVERYBODY is insecure and miserable, and the social maturity gap is the widest it's ever going to be, and it's basically like the autistic kids have targets painted on their heads.

But if a kid doesn't expect too much out of it, and manages to get through without giving up on themselves or turning hateful, high school is better. Being grown-up is even better.

If I hadn't learned to hate myself, really internalized that and made it the guiding principle of my life, things would be GREAT for me now.

On the subject of accelerated learning I just want to suggest you have a clear plan of where it will go. In my country, the last year of school was called HSC. I was allowed to do a couple of HSC subjects when I was 12. Trouble was, they didn't have a plan on what to do so at the end of the year I wasn't allowed to sit the final exams because I was.....12. Far too young for University so the next year I was dumped back in the other kids my age. I hated it and took to truanting like a duck takes to water. I left school the day I turned 15 and had a few wilderness years. Eventually I went to Uni as a mature age student but I feel they didn't do me any favours at school so make sure there is a plan. If the school runs out of things to teach him, he may end up like I was, dislocated from age based peers with nowhere to go. My Uncle went to Uni at 15 and I felt it was unfair. I would have been 13 and it's well known boys mature later than girls but it was what it was *sigh*. I just can't help feeling I got screwed over. They wanted to accelerate my son and I wouldn't let them. He's done just fine without it. A few times he complained about being bored and I would tell it was good practice for life because life is often tedious. He did find things to entertain his busy mind like teaching himself Chinese and Korean. There were enough reasons why he stood out from his peers, I felt accelerated classes would have just accentuated it but all kids are different and you need to do what you feel is right. Just be conscious of the implications. Find out what will happen down the track, if he gets to University level but is considered too young to go.

Suggestion about accelerating subject matter.

My DD has a friend who is TRULY gifted in mathematics. Not just a quick learner. Not just a hard worker, but tested gifted.

Our district has no G&T program. The high school will not accept middle school students into their classes. (liability reasons).

The girl went to our local community college (junior college/2 year college) for mathematics. The classes are 30 students/per class. It's all adults, but young adults. She went from ages 12-15. I believe she made it through all of calculus and linear algebra at the community college. At 16, the now teen transferred into the local university, but still stayed at the high school for the rest of her classes.

The good part was she still was around her peers for most of the day. Bad part was a lot of driving on mom's end, but mom did get reimbursed for the travel.

I know you are not in the States, but maybe that could be an option later on for your son.