New here

[ColleenPW]

Hi everyone,

I'm coming here after reaching out to my local community forum on another board and getting responses that I found very hard to take. Suggestions to get professional help, telling m's that other mothers would be happy to raise my child etc. Really upsetting.

I'm a 44 year old mother of two. My 7 year old daughter was diagnosed PDD-NOS last summer and I was diagnosed elsewhere with Asperger's. I think she has Asperger's. My two year old son who has had medical concerns since being a preemie and myhubby were both diagnosed at the same time with a rare genetic syndrome.

It's been very challenging. I love my kids, would give my life for them, have given up my career to spend all my time on funding apps, therapies, making our house more accommodating to their needs etc, trying to fit in my needs so I can be a better parent, etc.

I read the ASD and negativity thread and it really spoke to me. I have had some awful thoughts and feelings about my daughter - being on spectrum myself and trying to cope with the needs n challenges of an intense little girl on spectrum has been hard (not without much joy as well).
Just wanted to introduce myself and hopefully get some welcoming thoughts. I truly hope this can be my soft place to land and pick up the support I need to be the best parent I can.

[Emmeline II]

Professional help is probably a good idea . It seems that you've had a lot come down on you all at once and having a professional to talk to about it can be helpful. Last year, every time ds psychologist or therapist said that ds could be "a challenging child" I darn near cried having someone recognize that.

I don't know what kind of board you were on before, but people not in your situation probably can't relate. If their children are in "worse shape" than yours, you may appear to have it easy. If their children are NT then maybe they can't understand having the negative thoughts about your own child. I would think about my sister's PDD-NOS son who will never be independent or have a family due to the nature of his disabilities, and realize that ds likely would (now I know that's possible for him) but that still did not make daily living with him any easier.

[ColleenPW]

Don't get me wrong - I am well acquainted with professional help having been using the mental health system for myself since I was a child - and only receiving an accurate diagnosis last year (I'm 44 so that's a lot of missed treatment). But where we live there are NO services for adults on spectrum. It's frustrating as I know I need more directed supports to deal with ASD specific issues.
But I have received almost $10000 in charitable donations for dd and used it all on various therapies, have her well supported in the school system etc. So doing the best I ccan for her.
That's not my issue ATM. right now I just need to know I'm not the only one who struggles with like/dislike, feelings of wanting to run away, etc. It's hard and I'm sure I'm not alone with feeling these things from time to time.

[Linda on the move]

Hello and welcome to the board.

PDD-NOS is a very general dx, while Asperger's is a more specific dx.  (My DD fits both, but we use the Asperger's label because it communicates more about what is going on with her.)

I'm having trouble following your thread. How have you spent so much money on therapies and how are you getting her dx'ed and accommodated at school if you are not willing to see professionals?

[ColleenPW]

Hi and thanks for the welcome!
I didn't say I'm not willing to see professionals. We have had OT, BT, psychology, social groups and a pediatrician all involved. We have a system of visual cues, incentives, etc all in place. The money was spent on a local agency's private therapy as well as on some equipment, and that's how much it cost.

My point about professionals is that there aren't similar resources available to adults on spectrum.

And my other point about professionals is that that is not what I was looking for.

I was just looking for some emotional support from parents who feel similarly - who "get it" because they live with the daily struggles that can wear the best mother down to nothing.

[Emmeline II]

Originally Posted by ColleenPW 

That's not my issue ATM. right now I just need to know I'm not the only one who struggles with like/dislike, feelings of wanting to run away, etc. It's hard and I'm sure I'm not alone with feeling these things from time to time.

No, you're not the only one . Ds and dd are about equally easy to get along with now, but there was a point where it was so hard to have any positive interactions with ds .

I did a search for "Aspergers forum"; you may find something useful in one of them.

[Linda on the move]

Originally Posted by Emmeline II 

No, you're not the only one . Ds and dd are about equally easy to get along with now, but there was a point where it was so hard to have any positive interactions with ds .

agreed. I've been there.

I'm not sure why suggesting counseling made you feel so angry and not understood, though. I've spent time in counseling making peace with what it means to raise my DD. I still check in with my counselor once a month, even though I'm overall happy with my life and enjoying both my kids right now.

[Emmeline II]

Originally Posted by Linda on the move 

agreed. I've been there.

I'm not sure why suggesting counseling made you feel so angry and not understood, though. I've spent time in counseling making peace with what it means to raise my DD. I still check in with my counselor once a month, even though I'm overall happy with my life and enjoying both my kids right now.

I'm assuming it was said in a "what kind of mother has negative thoughts about her child, get some professional help " tone.

[ColleenPW]

Yes it was in the "We are concerned about your kids cuz you so obviously need help" tone, coupled with complete disregard to the fact that I have been in therapy for most of my life, that I am a social worker and very well aware of what resources do and don't exist in our community, and included in it was the suggestion that I focus too much on negative pathologies and maybe all my kids need is some nice trips to the park instead of more tests.

Of course we finally learned today that there is another UTI which explains the constant accidents. They clearly have already decided that I am the problem.

I would be so thrilled if I could find local professional help for myself that could help with what I deal with.

Thanks for the thoughts and discussion here.

[JFTB1177]

Hey Colleen, I just started posting here in the last few weeks myself and the ladies here seem really understanding and helpful (at least they have been to me)! I think this is a great board, in the little time I've been posting.

My 28 month old hasn't been formally dx yet but about 99% sure he will, as soon as we get our appt with the dev ped. He has almost every sign of ASD there is and was evaluated by EI recently and they said he has many characteristics of autism and have urged us to get an appt with a dev ped asap.

My son is a sweetheart but he can be CHALLENGING. He is more work than my 5 year old and 6 month old put together. I love him with all of my heart, but yeah there are days I feel like "running away"... I don't think that makes us bad mothers, I think that makes us human. Raising kids is hard enough, but add SN into it and it gets a lot harder. I think it is refreshing that you were so honest about your feelings, and it's a shame you got shot down. :(

I'm sorry you didn't get much support on the other board, and I hope you stick around here!

[beachcomber]

I was just looking for some emotional support from parents who feel similarly - who "get it" because they live with the daily struggles that can wear the best mother down to nothing.

Hi Colleen,

Just to give you a "who I am" piece ... :)

My DD is 5 1/2 and at the high functioning end of the ASD spectrum. At her assessment and diagnosis, they declined to say whether or not she'd fit into the Asperger's category as it's being phased out of the DSM-V anyway. But given what's involved with Asperger's, she's all there. My husband has Asperger's too, though that's self-diagnosed and not "official". We don't see the point in going for an official assessment for him as he functions well enough in the workplace. Home life is harder, for sure, but it got better after I realized how Aspie he seems to be.

I wanted to welcome you and let you know that this is a place where you'll be supported and encouraged. Sometimes gently questioned to see if you've considered some routes or not. But you'll never be dismissed or judged here. I've found a lot of acceptance here and that's been very comforting. Other people in my life just don't get ASD or Asperger's. They don't understand the details and nuances of my DD's persistence and intensity and how that can make for long, hard days. Or how sometimes I really don't like her one bit but that I always fiercely love her.

I hope you find help here and ideas that are useful to you and your family.

Edited by beachcomber - 8/11/11 at 11:29am

[FarmerBeth]

Hi Colleen,

I've been coming to this forum for a few months, now.  My son was informally diagnosed with Asperger's and had the ADOS today as the last of the official assessment.  From how it went I think we'll hear the same.  I've very much been where you're at.  I love my son very much but it can be very exhausting dealing with him, and sometimes I feel like I've run out of emotional resources.  I had an official diagnosis of nonverbal learning disability as a child, so I had my share of people issues, too, and I found the evaluation process awkward this year as during a lot of the interview process about DS I very much saw myself.  I think nowadays, I may have been diagnosed on the spectrum, but the therapy I had for OCD and anxiety gave me the coping skills I needed so I don't really worry about persuing it further.   But I do get how hard it is dealing with an intense child when your personal needs may be for more quiet and alone time.  I currently work as a teacher's aide, and used to work in special needs respite and as a family support worker, so I also get knowing what your resources are and not needing the rehash.  I found this board very helpful and supportive, and most disagreements stay pretty respectful.  So welcome!  I hope you find some of the community you need.