Parent Feeling Alone and Depressed

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Hi, I am new to this site. I have a 5 year old son who was diagnosed with PDD-NOS. I don't tell too many people yet about his diagnosis. Maybe I am still in denial. My family does know though and they are not very receptive to the diagnosis and say he is just fine, that there is nothing wrong with him. I realize there is something different with him but maybe not ready for the label. But they aren't even at the point of admitting he is different...maybe we are in just different levels of denial. I just feel overwhelmed. I would say he is high functioning. He has a normal to high IQ. We have him in speech and occupational therapy. The main issues right now are behavior and social skills. Already in kindergarten he is having difficulty interacting with the other children. I just feel alone in that everyone in my family has an opinion. "oh get him involved in sports". He is very awkward and clumsy and can't even catch a ball yet and has NO interest in it either. He likes to play inside by himself, which often involves lining up his toys or talking to himself or playing with electronics (taking pictures, or playing with tablet or computer) But I am made to feel I am a bad mother because he isn't outside riding his bike or playing with kids in the neighborhood. To be honest, neurotypical kids don't really include him and are already calling him weird. I am not going to force something that I know may make him feel rejected. I wish I could find more people in my area that had kids on the spectrum. I know they are probably out there. I just feel frustrated and depressed! Any advice from parents that have felt this way or still do?

Hi,

I'm not near you but I can definitely sympathize, non-verbal three year old parent. To make things worse not only does everyone family and friends deny anything is wrong but I live in a country where people think autistic kids should be locked away and kept out of site. Every DAY strangers have to make unfavorable comments, and it is just getting worse as my son grows(he is mistaken for six!). On one hand everyone denies a problem, then they comment on his behavior.

He has a handicap. There is nothing WRONG with him. It's a disability, it's not a mental illness, nor is it terminal. However, for family to deny that his handicaps are real is cruel, barbarous and ignorant. An invisible handicap is still a very real and serious obstacle to live with.



More ignorant cruelty. Insisting that someone do something they know damn well they cannot do is a hateful form of psychological torture. Being shoved into a social venue does nothing to improve one's social skills, but it does everything to make you feel awkward, out of place and completely unwanted.





I can't recommend pushing him into group social activities, but it would be healthy for him to have at least one or two playmates to interact with - though not at the same time - 2 + 1 is a dynamic that lends itself to 'ganging up' and bullying. Mutual interests help spectrumites forge bonds. We all need a little social interaction, even if we suck at it, just keep in mind that it tends to be a very draining experience for us and he may need periods of solitude afterwards to decompress.

Last edited by Willard on 12 Oct 2013, 6:47 pm, edited 1 time in total.

I can sympathize. My son is very high-functioning, and we are in the process of seeking a diagnosis. But I am an aspie and he is just exactly like me. We don't have the same stims but a lot of the same triggers, and the same clueless responses to social situations. My family (who kinda accept my diagnosis) are absolutely furious at the steps I am taking for him. They are currently not speaking to me (which suits me, but my grandparents are sick, so I really hope they get over this. It would suck if they died still hating me...) because I started homeschooling him because of focus issues and bullying. I know you feel alone, but ever spectrum parent out there goes through this. We may not be in your area but you've got us to talk to if you need it. PM me if you want. But stay strong and do what is right for you son. The rest of them can go screw themselves.

Wow! Thanks everyone for the responses.

TheSperg-- I deal with that too about comments on his behavior. People tell me I am not disciplining him enough or I let him get away with too much. I probably do to some extent but I understand that some of the behaviors he can't help especially if it sensory related, as my son has major sensory issues. It's just so hard.

Willard- Thanks so much for sharing what you did with me! It really has given me a new perspective. It has comforted me knowing that some of the things I am doing are probably the best for my son, whereas others maybe I need to reevaluate (labeling, etc). I guess as far as the diagnosis and telling people I just don't feel ready to past telling my family right now. I am not putting my head in the sand though. I am learning as much as I can about his disability and I am doing all I can to get him the best therapies (out of pocket too!) I decided to put him in a small private school instead of the public school. I am so thankful I did that. Although he is having some struggles, I can't imagine him in the public school system right now. To be honest he got services through the public school system last year when he was in preschool and I saw no difference in his speech or sensory/OT issues. I put him in private pay therapy beginning this summer and he has improved substantially in a short time.

EMTkid- I have gotten to the point I just don't talk to my family about my struggles or about my son other than superficial talk. It gets nowhere, and I end up feeling worse off then before the conversation. It is sad because I have always been extremely close to them. I am beginning to finally learn that I am a grown up and need to make decisions on my own without my family's approval (it just took me 39 years to get to this point and I still struggle with that).


Thanks again for the replies. I really do feel better already and I just joined. I should have done this awhile ago. I realize I can't shelter my son from all hurt, that is just life, but I am sure going to try to minimize situations that will make him feel isolated, humiliated, etc. He is a wonderful boy. I love his personality. To me he is perfect. He makes me laugh. I say he will be an entertainer one day. He also has been taking beautiful, creative, neat pictures with cameras since 4 years of age. I will be sticking around here! I hope I can maybe help someone on here one day.

Being a parent of a kid who is different is lonely. I have never heard of a parent in your shoes who hasn't felt that way. Even though my family is very supportive and "buy" my kids' diagnoses, it doesn't even really fix it. They still don't get it. And when you realize that no one "gets it," not even the people who genuinely endeavor to be supportive, there is really no other way to feel other than lonely.

That is why a place like this is a necessity. I have not always been here, but I have always had an online group that I "belonged" to and I am not exaggerating when I say it is the one thing that has maintained my sanity.

Stick around.

Because not only are we the only ones who will probably ever understand your challenges, we are also the only ones who will understand why you are overjoyed when you get a report from school that your child argued with someone else. Or why you feel like you could bubble over with joy because your child enjoyed a birthday party. Or because your 10 year old just learned to ride a bike. No one else will understand your joy.

But we will.

Well I wouldn't suggest enrolling him in sports, unless there is one that really takes his interest. Maybe tennis or golf - things that are more individualistic.
Don't despair. He is an individual and he'll find his way. I've noticed that neurotypicals seem to think that not experiencing social interaction is the end of the world. It isn't. Auties don't need as much interaction as NTs do to function. That's not to say that interaction isn't important, but don't set the guy up for failure. Find his strengths and play to them. Interaction will follow in a more natural way.

A lot of us have unsupportive families. You are not alone. I do not have anything to add to the true things already said, other than this. It is really common for the rest of the world to butt in with really terrible advice. The thing is to try to get into your child's head the best you can b/c communication is dodgy. Protect your child's interests against people who are convinced that all you need to do is be harsher. If you smacked a quadriplegic a thousand times he wouldn't be any less disabled. You have to figure out the biggest obstacles (mixed in with the low hanging fruit that will make you and him feel successful) and work on those things.

Last edited by ASDMommyASDKid on 12 Oct 2013, 3:53 pm, edited 1 time in total.

I love what InThisTogether and ASDMommyASDKid wrote! There probably isn't one parent here who hasn't had the same experience as you at some point and even though I don't *share* much of that part of our experience (two spectrum kids, aged 6 and 12 - it happens) it's an amazing thing to be able to come here and vent/share/support each other and get insight from folks all across the spectrum.

You are very much not alone.

My advice on the social stuff is follow your son's lead - one of our guys wants to be social and the other one doesn't. They've both received varying amounts of "social skills" training, but to be thrown into a big, socially complex activity like group sports would be absolutely overwhelming for both of them. If he's interested in sports/scouts than it might be worth a try, but that kind of group socializing is incredibly tough when you don't innately know/understand/use all of those little social cues. Combine that with sensory issues and it could be a nightmare instead of something fun.

My older guy is very much the introvert - he would play with other kids at the playground/school but wasn't interested in having any kind of relationship beyond that. Yesterday is the first time he invited a friend over to our house - in 7th grade. He's known this friend at school for the past 4 years.

The little guy (almost 7) is much more social. He has one friend in the neighborhood (also on the spectrum) that he visits (and who visits us) every couple of days, but it seems to me like a friendship based strictly on familiarity and routine - which is a good start.

Everybody does "social" differently so at this point I would just see what your son in interested it. If he likes photography and art, he might be interested in an art class - use those interests to expand his experience. If a class is too much, maybe one similarly inclined classmate/kid/adult to work with on different projects would work better. And don't fall into the trap of thinking that social interactions should just be between similarly aged people.

I love what Willard said about labels - to us labels are just a way to more quickly describe behaviors/characteristics to people who might not otherwise understand. It's all too easy for some people to just assume that your kid is/isn't doing something because they're stubborn, not trying hard enough, lazy, stubborn, spoiled, especially when the kid can't articulate why they do something differently (or can't do it at all) instead of trying to understand why (memory, processing, sensory, motor planning, social misunderstanding, etc. ) and give support/accommodation where it's needed. Even with that label and potential understanding, it's sometimes still a struggle.

As far as labels go, it is all in how you manage things. With my son, he can't ever remember the word "Aspergers" but he knows that he thinks just a little differently than most people. In our talk about it, I explained to him that momma is a little different than most people, and he is like me (I think that helped a lot, because it made it clear that he wasn't alone) and that God made our brains a little different just like He made our little dachshund different from the neighbor's German Shepherd, and that we were made this way for a reason. I explained that weiner dogs were bred for chasing badgers into holes and were so long so they would have the body weight to survive a fight. Then I explained that a german shepherd is a police type dog, bred for specific jobs. I never told him he was "disabled" or anything, just that we had to work harder at certain things than others, and not as hard at others. I told him that not everyone could work with mechanical things like he can (he's 8 and can fix anything) or could read like I was when I was little (college level at 7) but that we had to work harder at stuff like spelling.

The biggest problem with labels is other people's reaction to them. I told him that some people are ignorant (he knows that means uninformed or uneducated rather than stupid) about such things, and if we are to engage their beliefs at all, it is to prove ourselves better than they expect. He likes that. He likes to prove people wrong lol...

My current fears on labeling or telling the school or other people his diagnosis is that they will treat him different because of that. Plus I don't want people to feel sorry for me or him. I don't know it's hard to explain. When we were going to put him in public school I had concerns of him being taken out of class for speech and OT, or having a special teacher in the class with him. I felt like that would make him stand out or feel different. I think my concerns are right because of this reason...in his private school I take him to OT and speech after school, however in the beginning of the year I had to pick him up like 30 min. early. After a few weeks, he expressed to me he didn't want to leave early and that no other kids left early. So he was aware of that and I quickly changed his appointment times so that he would never have to leave early again.

As far as sports, I am not concerned with that at all. That was just some opinion my brother had and shared with me. Remember, this is one of the family members that won't acknowledge his disability. I do think when the time is right I may try to get him involved in an individual sport, like swimming (I was a swimmer). However, he just doesn't have the coordination or muscle strength or gross motor skills at this point...something we are working on in OT.

For social skills, he has one friend from his preschool last year. I believe she could be on the spectrum and they get along great. We have her over a couple of times a month and they both are happy to just play next to each other (not too much interaction at this point). He also has a younger cousin (4 years old) who is sees a couple of times a week when he is with his Dad.

I don't know. My biggest thing that I am struggling with is I get from my husband (his stepdad) and also his dad (my ex husband) that I am not disciplining him enough and let him get away with too much. I know people think a lot of his behavior is "because he is spoiled". From my family, I get "he is fine, he is just like any other kid this age", " he needs to be more active, more in sports and outside activity". I feel so distant and have begun to isolate myself from everyone. I have begun to shut down and really not talk to anyone. Even discussions with my husband (who I rarely ever argue with), always leads to disagreements. The latest was the sports comment my brother said....and my husband agreed with my brother. I was like "Hello, you know he can't ride a bike or catch a ball". He has this mentality like it will toughen him up and he will survive. I don't want him to just survive I want him to thrive.

Thanks again for all the support and everyone taking the time to respond to me!

I have found a strategy that works for me for unhelpful or off-target advice. It goes something like this:

"Thank you for your feedback. I'll keep it in mind." Pleasant tone of voice. Pleasant facial expression.

No need to explain why it is inappropriate, why it won't work. Or why you disagree. I have learned that most people are giving the feedback for the right reasons, even though they are often off-base. I do appreciate that they are trying to help, and trying to explain to them how it is NOT helpful only causes rifts in our relationships. There are some people who I never discuss my kids' issues with. It will never be a productive conversation. I remember early in the game this was harder to do, because your entire life is consumed in the beginning. But as time progresses (and your son does, too), you will find yourself more able to have conversations about things that are not ASD-related.

When I get the "So...have you tried it yet?" I will usually say something like "Not yet. We are working on a few other things. But I haven't forgotten what you said. As soon as the time is right, I'll try it."

I don't need to tell them the time will probably never be right.

However, sometimes other people are right. And there have definitely been times that I have coddled and have actually discouraged my kids from trying things that they actually can do because I was afraid they couldn't. So, I always try to check myself and make sure that I am remaining open to more possibilities than just my own POV.

I would like to get to the point where I can do this. And maybe I am getting there. It has been hard for me to do that though especially with my family. I want to explain to them why I am not doing certain things so that they can better understand what is going on in my life and their grandson, nephew, cousin's life (depending on who I am talking to).

LizaLou74, if your child is managing fine in school, and you want to handle any therapies privately without pulls, there is no rule that you have to tell them anything. That said it is really early now, and there may be a necessity later on. Many high-functioning kids do later on need accommodations for executive function skills and that kind of thing or have issues when NT kids make quicker gains and expectations become tougher.

You can play it by ear, you know. The only reason we pursued things when we did, was it was quite clear we were going to have issues. But my son is HFA not PDD-NOS, and has very severe social/emotional delays. Every child is different. Not all spectrum kids require anything from the school.

Well, he is managing but I am not saying without struggles. Currently, the private school knows what is on his IEP (his exception is developmentally delayed). I am comfortable with "developmentally delayed". After 6 though, he can no longer carry that as his exception. We would either need to present his current diagnosis or just let that fall off. Honestly, I think I will eventually tell them. Guess I am just holding off for now. I don't know what I am really afraid of. It's obvious my son has struggles and differences then the other kids, but guess I am hesitant to have a name put on it. It's just so hard.....

Don't worry too much what to say to school. It is hard and I wouldn't want to minimize that. But the school may already have a pretty good idea from observing him.

Last edited by Waterfalls on 16 Oct 2013, 6:14 pm, edited 1 time in total.