Parent Feeling Alone and Depressed

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Hi Liza,

I certainly have been where you are. My son too was dx'd with PDD-NOS. So many people have told me that he was "fine" and made me out to be hypochondriacal about him. Every psychologist/psychiatrist is convinced of his diagnosis, while his ABA therapist who herself struggled with him isn't convinced of his dx. It is maddening.

I will say this though: Boys in general do much better when they do have a physical release. They get their aggressions and pent up energies out and they are better able to learn and focus. My son is not into sports although he has recently developed a love of his scooter. He cannot ride a tricycle yet at age 5, but he loves to run and jump. He loves to wrestle and have silly pillow fights (he is not very good at them but that's not the objective anyway). I happily engage him in these things, as it gets his heart rate up and exhausts him, and also ensures he gets to bed and falls asleep at a reasonable hour, giving me a much needed break!


Good luck, and don't let anyone bring you down. They are not the ones who live with your son and have to plan for his future. They do not know him like you do. Having two kids of varying disabilities, I know that I'm not making it all up, but there are those days and weeks where I scour my history and beat myself up for any perceived mistake I made that could have lent to some of his current behavioral problems. It is not an easy road, but I do think that I would not have been "given" this particular challenge if I didn't have it within me to make it all work out. It is a challenge I must live up to and do my very best no matter what all the naysayers say.

I think it's important to give them this information well before they start to need it.

It's ok to be scared. We've all been there occasionally. I've been an official "Autism Mom" for 5 years and it still happens to me as well. It's not always an easy decision, to disclose this kind of thing, but I've seen more positive things from disclosing this than negative things. Definitely much more understanding and even a few opportunities to share some awareness and enlightenment.

You might want to look into a re-evaluation as well, to go along with the re-labeling, depending on when his last evaluation was done. Our older Aspie kid Julian was evaluated in third grade and it was a different experience that with our young guy.

On the WISC (IQ test), which is usually administered after age 6, you can see objective data about why your guy is probably struggling (typically processing speed and memory for folks on the spectrum) and find ways to support him. The average age of an Asperger's diagnosis is still 8, because this is usually the age where academic/social demands start to become even more of a challenge and kids who were previously able to keep things together start to not be able to cope as well with all of the demands.

On Julian's WISC scores we saw a huge amount of what they call scatter - incredibly high scores on part of the test (93rd, 89th percentile) and incredibly low scores (7th and 3rd) on the other half. He has huge deficits in processing speed and memory and being able to show people that data is 1) a very useful tool to be able to help him, by using appropriate accommodations 2) a nice way to have proof that your kid isn't just being lazy and "just needs to knuckle down and do his work".

Even with this information, you'll have teachers/family that sometimes still hold that opinion, but at least you have that information for anybody ready/willing/able to use it.

With Colin (little guy) we don't have as much of that same kind of data, since they do different tests for different age kids. Colin was last evaluated at 4.11 years, and we're still waiting on the re-eval results. We know that at the time, he was a little behind on motor skills and language articulation, and that he could read whole words but couldn't identify individual letters of the alphabet (hyperlexic much?) and that he had pragmatic language deficits. I'm really interested to see what this new evaluation shows.

I think it is scary at first, but knowing is also the answer. The answer to how to finally solve things like behavior issues. Once you understand all that you possibly can about how an ASD mind works, changing how you handle things with your child just starts to make sense. We have lots of threads on these boards that will help you with all of that.

My family doubted me a lot in the early years. And they told me their doubts. By mid elementary they did start to see the challenges, but still weren't really on board with how I was parenting. On that, they came around when my son was in middle school; they finally started to see all that I already knew, and also started to see how he was overcoming the challenges because of how I had been working with him.

You do your homework and trust your instincts. If you are lucky, eventually the people around you will start to see how what you are doing really is for the best. In many ways, it is a relief to throw out the standard parenting handbook and just experiment, do things your own way, and shut out the opinions of the rest of the world. No more second guessing yourself in the face of critique because if they aren't raising an ASD child, they simply have no idea what you need to do.

And you are right, you want your child to thrive, not just cope.

Mostly, right now, I want to give you hope. Your son can learn to deal with most of his challenges. Our kids on this board are doing amazing. The road can get super rough, no one is going to pretend that isn't the case, but with all the information now out there, and the parenting protocols so many of us here have developed and used successfully, your son can adapt and overcome, and create a life he'll be happy in. My son is 16 and thriving. He is off IEP, acting in school plays, busy in Boy Scouts (he is an Eagle), doing honors school work and, yes, he has friends. He even had a brief spell with a girlfriend this summer, until he decided he didn't have time for it. He is a super different kid, and sometimes it really startles me what his thoughts and ideas are, but he is a happy person and comfortable in his own skin. So, I'd call that success. Not perfection, just success.

You might also be able to find a sensory friendly (quieter etc) museum, library, movie theater activity that would introduce you to other parents who understand. And since those activities aren't diagnosis specific, you aren't putting yourself that far out there.

There is nothing like talking to a human being who understands and who isn't judging you, or your child.

Also I think when we are looking too hard for answers some people tell us what they know that worked for them with too much force. It is often not relevant, and can be very frustrating, and very isolating.

Remember, too, that many of the other parents out here who you are looking for have also been burned over our own and our children's differences. I've had more drama than I wish for and you're right it's hard to find others in similar situations. But I find the more calmly I approach issues, the more warmth I find from others who I imagine have also had too much drama with others' opinions. Because I think that what you are going through with others pushing their opinions on you does happen a lot! And it is hard, leaves one cautious about speaking up.

Thank you all for your replies. It is very helpful to hear from others who understand what I am going through. Today just happens to be the day of his IEP meeting. So the public school representatives will be meeting with myself, my son's Dad, and the teacher and director of the private school he is at currently. I think I am going to tell them about his diagnosis. I had trouble sleeping last night going back and forth whether I should disclose this information.

I want to throw out a couple of questions to all of you.

First--Why do you think we get so much resistance from family/friends about the diagnosis? Is it denial, is it them trying to lessen what is going on to protect you or make you feel better, or is it that they truly think that my child is just a spoiled, misbehaving, stubborn child?

Second- Those that have behavior therapists for their child, are you happy and glad you have this therapy? I currently feel overwhelmed with OT and ST (which are both an hour away), and working myself a very stressful job....I feel like adding one more therapy plus one more person to the mix telling me what to do I think I would crack!

Third-I am still learning a lot about autism spectrum disorders. My son doesn't flap is arms or rock, although he does squeeze his fists up by his face, scrunch his face periodically during the day. Any idea what he is getting from this? He has a ton of sensory issues. Also, lately, he will just talk incessantly about nonsense. Sometimes makes up his own words, or will sing songs, or just talk out loud. Is this considered stimming or seen a lot in kids with autism?

Last-He has this thing where he wants me to talk for him. Such as in the mornings, he wants me to tell his teacher something. Like "tell her what I am going to be for halloween". I say "you tell her". He will say "no you" and will have complete meltdown unless I tell the person what he wants them to know. Is this because he isn't confident they will understand him or is uncomfortable interacting with them. I don't know how to handle this.

I just feel so down. He has been sick with a cold. Walking to the classroom he sneezed and a bunch of snot came out of his nose (poor kid), and he just got so upset. I quickly wiped it off with my hands and shirt to calm him. Meanwhile, other mothers walking up with their kids are witnessing this meltdown. And this is one of many they have seen. I can clearly see the kids don't interact with my son. All the other kids are running up to each other saying hi, and my son gets none of this. It breaks my heart. I spend a lot of mornings crying. I think he is in a nice school. Honestly, public school I think would be much harder for both of us. But I just think it is what it is. Kids are kids. And even if they aren't being mean or bullies, my son can sense he doesn't fit in.

I keep thinking about homeschooling and that down the road this may be the way I will have to go. I hope it doesn't come to that, but I worry that it will. I have to continue to work at least part time, as I am the main income in the family. Do any of you homeschool and still work part time?
I feel like once I accept his diagnosis I can move forward and I am right there...I think giving the school this information today will be a turning point for me.

Show you enjoy your child and expect to be respected. It helps with others' negativity. And in meetings with school staff, do your best to maintain calm. Helps them focus on helping your child and otherwise they tend to turn you into the problem. Which will not help.

As far as another therapy, I got much more from speech therapists and OT that helped. I think it depends on your child, the provider, and what you are looking for. I would not get hung up on the label as any provider, regardless of degree, may offer you help for a given issue.

Good luck and stay strong today!

I am going to try my hardest. I am not even a big crier, but when it comes to my son, I just breakdown. My biggest fear, is I will cry today at meeting. I am going to try and stay strong though. I do enjoy my child so much, and I am sure the other parents can see that enormous love I have for him. I can only hope I make the best decisions for him.

My son does this too. I have no idea why he does it. On one hand, I don't want to be totally unsupportive if he's having a hard time telling someone something, but on the other hand I don't want to rescue him from every little bit of discomfort.

In this case I would tell him, "Well I think we should both tell her together. What do you think? If not, maybe we can try another time when you can help me tell her." And if he agrees, maybe I would start out to say, "Mrs. _____, DS has something he'd like to tell you. He is going to be something for Halloween. He is going to be a [silence, and look at him to fill in the blank]."

I wouldn't let him totally off the hook.

On the first one: It might depend on the person that isn't believing it.

My husband will watch our youngest spinning in circles on his toes while staring at the overhead lights, or lining his toys up and playing with them in a ritualized way over and over for 2 hours straight, or hit the floor holding his ears at loud sounds, or repeating words/phrases a hundred times in a row. He'll watch those things and many more like them and then get defensive when I say he needs a diagnosis and therapy. For him I think it is partially denial, and partially that he had bad experiences as a kid with being sent to reading and speech classes and being called stupid by teachers and other kids, so that he thinks therapy and a diagnosis will mean the same thing for the Sprout.

My step mom 100% believes that I spoil him rotten and that he is just a stubborn brat. My mom and sister are somewhere in the middle with sometimes thinking he is just misbehaving, and sometimes thinking that it is something deeper, but even then rarely being willing to admit that it is autism and not my mom's current favorite "he's just immature". I think for her that she thinks she is being supportive by saying things like that. I've had people say things like, "He's very high energy isn't he?" I think they think they are being helpful when they say things like that.


On the third thing: Both of mine do or have done the incessant talking thing. Sometimes my youngest will get stuck on a word or phrase and repeat it 30-100 times. I think that is a type of echolalia. Other times he will "play" with words and sounds where it seems he is just doing it purely for the enjoyment of the way it sounds (NT kids do this sometimes too, I think, but maybe not so much at school age). I think that can be a stim. One other thing is that my oldest didn't realize that thinking was not supposed to involve words coming out of his mouth. He thought "out loud" basically narrating everything. We had to teach him to "talk" inside his head without sound coming out. I've heard of others on the spectrum being like this, too.

Is he aware of the face scrunching? Does it happen a lot? I think that is one that could be a stim, but could also be a possible tic. We went through about 8 months of tics with my oldest a couple of years ago, then they went away and haven't come back yet. He did the classic eye blinking/throat clearing combo, but sometimes the eye blinking would get bigger and be more like scrunching up his whole face. None of mine do the fingers in the face thing, but I think that is a classic/common stim.


On the last thing: Based on my youngest son, I'd say that it's a comfort thing. Mine doesn't like to talk to people he doesn't know that well. He'll do things like hide behind me or flop onto the floor and then whisper answers or say them in a monster voice, which I have to translate for people. We also get a lot of behaviors when interacting with new or unfamiliar places and people. Running and jumping and flopping all over the floor "dancing" are things he does when he isn't comfortable. It's still pretty early in the school year, I would guess that your son still isn't used to the new routine or the people he is now interacting with. Mine was only attending one day a week, but it took from August to May last year for him to even acknowledge that the preschool teachers had a name, much less want to talk to them unless it scaffolded off something he was interested in and wanted to talk about. Once he gets to talking to a person for the day, he's usually okay with talking the rest of the day, but getting over that initial start is hard sometimes.

mikassyna-- Good suggestion. I definitely try to encourage him to say it, but I usually cave and just end up talking for him...mainly to prevent meltdown or take too much time from someone. Sometimes he will want me to tell the cashier a store something and I just do it to prevent a big scene or a hold up of the line. When I am in a situation with more time and comfortable and I am going to start practicing us doing it together like you suggest.

MiahClone- I agree with you on the first one as well. I think my dad is in complete denial, just doesn't want to admit his son may have a disability. My sister I think just tries to make me feel better, and lessen my stress or worry. My husband thinks I put too much into the autism thing, and says I spoil him and let him get away with too much.

on the third one--Yes, he is aware of the bringing hands to face in fists and scrunching face and tensing up body. He would here me mention it to doctors and then he stopped that but started chewing on his shirts (badly, putting holes in all of his shirts). Now he is back to the fists and scrunching but no longer chewing shirts. I don't bring up that he brings his fists to his face anymore, because I don't want him to feel self conscious and also am happy the shirt chewing is done for now. Funny you mention the throat clearing. He has been doing that all the time, I though maybe it was allergies/post nasal drip and that was reason for it. I guess this could be a tic?

You can try making it exciting too. Like, "Wow now you have to help ME to tell her because I can't say it all by myself!" (And then high-fives all around!) And if he can't I still wouldn't give in. I'd just cheerily say, "Oh ok, you're not ready yet, so we can do it another time when you're more ready! It's OK!" I think with my son, and possibly with yours, they need to really feel in control. The need runs very deep and it takes some psychological calisthenics to understand how to let him feel like he's still in control when you get him to do the things you need him to learn how to do himself. I don't always remember these tricks myself. In fact, I often fail and think of these tricks well after the fact, after I've beaten myself up for a day or two LOL When I do implement them, it is beautiful because they really work, but it seems my son is always one step ahead of me in thinking up yet another obstacle to add the next time. So, it is a never ending struggle...

[quote="LizaLou74"
on the third one--Yes, he is aware of the bringing hands to face in fists and scrunching face and tensing up body. He would here me mention it to doctors and then he stopped that but started chewing on his shirts (badly, putting holes in all of his shirts). Now he is back to the fists and scrunching but no longer chewing shirts. I don't bring up that he brings his fists to his face anymore, because I don't want him to feel self conscious and also am happy the shirt chewing is done for now. Funny you mention the throat clearing. He has been doing that all the time, I though maybe it was allergies/post nasal drip and that was reason for it. I guess this could be a tic?[/quote]

That sounds like stimming to me with the fists and scrunching, and with shoving it into something else (the shirt chewing). With my oldest he wasn't even really aware he was doing the tics unless we pointed it out. It wasn't for comfort or enjoyment like a stim. He wasn't getting any benefit from it, but he couldn't stop. We had to make sure that it wasn't his sinuses. I thought that too, but it didn't stop when the sinuses weren't a problem.

Hi everyone. Just wanted to say yesterday's IEP meeting was very non-productive. I guess I expected some big thing to happen when I disclosed his diagnosis. Firstly, I have him in a private school so the public school offers minimal services to him regardless of his diagnosis. They were willing to evaluate him, but it wouldn't change any services he is already receiving currently under the developmental delay exception. He will lose that and any services in Feb 2014 on his 6th birthday so if I choose to before then I can have them evaluate him for ASD. Again though, the services they will offer will be minimal and I already do private pay therapy so I probably wouldn't even accept them anyway. I declined evaluation at this time. His teacher who was also at meeting didn't seem surprised at all by his diagnosis, but I am glad that at least she knows that there is a reason for some of his behaviors and not just be guessing. I guess I just expected more, don't know what I was so worried and nervous about.

You weren't worried for nothing. Anticlimactic is better than dramatic in this situation. I would consider this preparation that may lay groundwork if he has more trouble later. Honestly I found private speech and OT much better for high functioning child. But school district provided great support in some areas for my child that worked well and now she organizes her writing for instance beautifully.

This is my impression of what happens for "parentally placed" child, not what the rules say: Until and unless the private school asks for and wants help, the district will not get involved. Before they will get involved, the parent and the school must be asking and must have exhausted reasonable extra efforts to solve the problem. It helps to have a label. The child must cooperate at least minimally. Also remember that service providers are not created equal, some may be great with your child, some not.

Be open to what happens. Ask questions if you are confused, or think others may be. Your child may surprise you and flourish with what you've put in place for him.

I often felt a letdown after meetings, it's miserable. But temporary. Most of us understand what that feeling after a meeting is like, don't feel you are alone!

Sounds pretty typical, for an IEP meeting. I'm sure you'll have some in the future that are more interesting.

Keep in mind that if you think there are going to be classroom issues, that IEP is very important. Yes, they can always use a 504 plan but make sure you're aware of the differences and what it could mean to your guy. From my understanding, an IEP gives him much stronger protection under the law.

From my favorite special ed site:
http://www.wrightslaw.com/info/sec504.i ... bility.htm

We've received pretty minimal services through our school district (primarily ST, social skills class and now the older guy has a dedicated word processor, supplied by the district), but the thing that will probably help your son the most are accommodations. Even with accommodations on a legal document, some teachers won't always follow them, and then you have to fight - but I've found these to be vital. That's where that eval is important too- you can show them on paper exactly why your guy needs accommodations.

Our younger guy only has 3 accommodations on his IEP currently, and the older guy has 13.

On the therapy front: If we didn't need it, we wouldn't do it. Anything that aims to change the essential makeup of a person is out the door for us - giving them specific skills or support in areas where they struggle is another thing.

And the face scrunching does sound like stimming. Our older guy used to have a whole vocabulary of stims - some were happy/content stims and some were uncomfortable/anxious stims. You could tell his emotional state better by watching his body language than by facial expression. As he's gotten older, it's become less obvious.

We've got a little incessant talker too - I think that's just how he processes stuff. There is an almost constant stream of consciousness flowing from his mouth, unless he's upset. And he also want's me to talk to people for him, but mostly social greetings, "Hey, we should say hi to ___________". "I want you to do it." "So let's do it together. " He's always had issues with social reciprocity, so I just chalk it up to that.

"Last-He has this thing where he wants me to talk for him. Such as in the mornings, he wants me to tell his teacher something. Like "tell her what I am going to be for halloween". I say "you tell her". He will say "no you" and will have complete meltdown unless I tell the person what he wants them to know. Is this because he isn't confident they will understand him or is uncomfortable interacting with them. I don't know how to handle this."

I did this growing up, and it was mostly fear that if I tried to say it, it would come out wrong and they would try to ask me about it and I would not have the words ready in my head to answer. Talking to strange people was and is stressful.

The trouble with this is that I am now 31 years old and still will 98% of the time have my husband call and order the pizza or talk to the phone company or ask the clerk at Blockbuster if they have Flatliners on DVD.

But when I was young, my mom never would talk for me like that. It didn't stop me from being like this, it just ensured that the vast majority of things I felt like I needed to communicate went unsaid. That made me feel like what I had to say didn't matter. Do it? Would be more comfortable for him, and make him feel more like what he feels and thinks matters. Maybe the validation will make him more confident of his own thoughts. If you don't there's no guarentee that it will change anything in the long run. With my son, who is 8, we are setting up situations in which he will order dinner for us (simple stuff like 4 buffets, 2 sodas and 2 waters at Cici's) or at the movie theater order our tickets. On the way, we practice, and point out all the questions that might be asked, and the rationale behind whatever he needs to say. For instance last week we all went to the movies. So I explained that my husband and stepson were going to see Gravity, and the 2 of us were seeing Cloudy with a Chance of Meatballs. Then I explained that his brother was over 12 so at the movie theater he was considered an adult. So when we got there he paused, probably running it over in his head, and then walked up to the counter and said "2 adults for Gravity, 1 adult and 1 child for Cloudy with a Chance of Meatballs, not 3D". Perfect. With practice and understanding what he is saying and why, he is getting more confident. It takes practice, and adults that have the patience to work with him. I never had that. But I will do whatever I have to in order to make sure my son does.