New here...looking for support? Answers? Not sure

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ASfamMom
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24 May 2010, 2:09 pm

Hi all-

I am a mom to 2 teen boys with the Aspergers diagnosis. I have been working with them having the DX since 2000. I know the ins and outs for them and have been able to successfully supported them more than anyone would have thought possible when they were DXed. They are both achieving more than was predicted....by far.

Now that they are becoming more independent and I am having some moments to look back at it all, I am finding myself at a loss. I am feeling more and more that I also work with having Aspergers myself. I did so much of what they did when they were younger, I still struggle with areas that they struggle in, I never have "Fit in" and still do not....even in the Autism/Aspergers community that I work to support.

I have asked the doctors office nurse practitioner at the boys doctor if they could refer me to a doctor that works with adults with AS and have never gotten a response...like I ask, but no one hears the request.

When I mention my concerns to others in the community I get this reaction of NO, you can't be AS...you can communicate, you advocate, you are funny, you are capable....but what I find funny is my children and most people with AS can do all those things as well....
I am seeing myself having more and more anxiety issues the older I get, I feel more and more isolate as the boys are becoming more independent. Yet I see them running into the same things I did at their ages.

My older son when he went to prom, no date, no buddies, he went had the experience, called for pick up a couple hours later. For graduation, he wanted to say goodbye to so many people, he felt he had made a lot of friends and was even popular...yet very few people acknowledged him...much less wanted to have a picture with him. No one searched him out to say congrats. At the sr. party, again he had fun, but no one hung out with him, no one wanted a picture with him, no one even said bye when we left. If he sees this behavior out of others, he keeps it to himself.

I went through all of that and still do, today even my husband thinks I am mad at him because I say he does not understand me...he thinks he does. Yes he supports me, but he does not seems to understand me. How isolated i feel, how I never seem to have anyone that wants to go out with me to get away.

How I have been saying very very clearly - I need a break, I need to get out of the house with a friend, how I feel I am at risk. No one gets it.

I was blessed to find an old friend that seems to be struggling the same way I am, but when we talk we talk too much and our conversations become too deep and too intimate. Sense we are both struggling in our marriages with our spouses understanding us we have decided no longer to talk with each other and work on our marriages.

I remember going through the things my children do, I remember how at the time I could deal with it, but as I look back, and as I get older I realize how isolated I have become. I do not want that for my kids. I want to know if I am indeed dealing with AS or if I am loosing my grip on reality.

So if anyone has been in this situation - I need help - I need a direction to look into. I am safe, I will not hurt myself - I have 2 awesome kids that I will always be here for, but I am fading...as I have been for years now and I need to be able to find answers.

thank you



CockneyRebel
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24 May 2010, 2:24 pm

Welcome to WrongPlanet, and welcome to my time warp. :)


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liloleme
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24 May 2010, 2:36 pm

After my daughter was diagnosed with Autism, my husband and I did a lot of research and my husband quickly came the conclusion that I had Asperger's. At first I was thinking....Nah, people with AS are obsessed with math...I hate math and have dyscalculia (read numbers backwards and other problems)...I was ignorant. We sat down and made out a list of all my "oddities" and took it to the psychiatrist that my oldest son (bi polar) used to see. He diagnosed me with Asperger's.....actually quite quickly. He explained to me that women and girls present with AS a bit differently than men and boys. We tend to get along better...we find other girls or women who mother us along the way and we sort of muddle through life. My 7 year old son was diagnosed about a year and a half ago with Asperger's the psychologist who evaluated my son took my husband aside and told him that our son had Asperger's and if he had not told her she would have told him that I have it too. Recently my 17 year old daughter was also diagnosed.
My advice to you is to go to a psychologist or psychiatrist that have experience with Asperger's and ask for an evaluation. Write down every reason that you feel you do have AS and bring it with you because if you are like me you will blank when asked. I understand feeling alone and never fitting anywhere. Im sorry about your problems with your husband but maybe if you find out what is going on and get some therapy and help with your anxiety (which does get worse with age, Im living proof) than your husband can find ways to better understand you.
I am also an advocate for my kids and I also have a good sense of humor....I still have Asperger's and the knowledge of that and the more I learn about myself the better my life is.
I wish you luck and if you need to know anything else feel free to PM me.



ASfamMom
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24 May 2010, 2:59 pm

Thanks Cockney Rebel - I can relate to time warp LOL

liloleme - Thank you so much for your post...it made me cry worse, but is a good way that I am sure you can relate to...almost a sense of relief. I have been thinking about writing a list of my reasons why I think I am AS, but guess I had not thought through the step of giving it to the doctor for the kids...he is one of the most sot after AS docs in town...perhaps with a list to him he would be interested in further discussion or at least refer me to someone. Or he will look at me and laugh and say about time! LOL.

I do tend to blank at the doctors office for my boys and tend to write down things regarding them...just not for me. Last doc I went to see (older psychiatrist - focuses on BiPolar) agreed quickly with ADHD for me, I had made a list for that and we had discussed...ironically I can not even make eye contact and was distracted by everything in his office. As we spoke he started going the bi-polar path which since I am pretty dang stable with the exception of when my schedules get off track and my patterns suffer I do not agree with BP. My other concern with that doc was that it seemed that even when he took notes he did not remember much of what I had said in the previous session and his notes seemed to be incorrect to what I had told him. He also scribed an RX for me that sent me into a tailspin so fast it felt like my head was spinning literally. When I called to report the concerns...he said I needed to stick with it....um not when I have to function otherwise and I could not even focus on the road for school time.

I wish my husband saw my tendencies...he has struggled to see that the boys do not mean to do some of the things they do related to their DX. He married into all of this - I was a single mom before. He seems to not see or hear me...if that makes sense. And when he tried to be supportive he tends to get a tone in his voice like I am making him mad...so I just stop.

If I approach and ask him about things he shuts down...he is DXed with depression and ADHD. We have been working with a counselor for nearly a year, but other than his stopping drinking (which I am very proud of him for and tell him often) things are still...well...living day by day with little to no improvement. I most the time still feel like a single mom and at times wish I still was since I had more control of the household.

I have started writing again (use to be my saving grace when I was younger) and I have been working through some with that....will start on that list...next doc appt are over the summer...and both kids for the first time ever have outside the home camps so I will be able to get to a doc myself. I have homeschooled my younger son for over 3 years now (due to school not being able to work with him...he used to physically rage) so I have not had much chance to refocus and figure out my stuff. This summer older is away to camp as a job and will be gone for 11 weeks and younger was accepted into a special needs day camp for 8 weeks...time to work on me I suppose.

Thanks again...glad I decided to come here.