Does anyone else feel isolated?

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Registered: 06-26-2003
Does anyone else feel isolated?
9
Thu, 06-26-2003 - 11:09am
Summer's here, which means my ds (5.5 y.o., PDD-NOS) is out of school. I've seen in other postings commonalities with the bug phobias and the "he/she doesn't do that here in school" descriptions, and I'm wondering if perhaps I'm not so alone in my sense of isolation. Like another poster here on the board, I live in military housing (1st time in 12 years' association with the service), and that's good and bad. The high turnover rate of occupants makes me feel like we've virtually moved into a new neighborhood by the time this summer is over.....which is so depressing because, due to my ds's social difficulties (screaming at other kids, not wanting them to touch his things or look at them or him, developing and maintaining endless grudges against particular kids for no apparent reason, etc. etc.) it is hard for me to get out and meet other moms on the street and make friends in the casual way of those with NT kids (the kiddies play together while the moms chat, for example). I am very open with my son's diagnosis....I feel not doing so is unfair to both him and the rest of us, and would set him (and us) up to be very harshly judged for behavior that stems from the PDD vs. general badness. However, I feel like my friendships are rather hard-won, mostly due to lack of opportunity and somewhat due to the lack of commonality brought on by having a 'different' child. So the scheduled leaving next month of the last of the few women on the street I'd really call a friend vs. an acquiantance is really tough to think about. Back to the first line of this post, the end of school for me means virtually complete social isolation, precious little PDD-free time (time away from DS) which is dependent upon my dh relieving me when he's off from work. Lord knows we don't have a babysitter!!!! There are days when, if my husband is preoccupied (or not around much or whatever) that I might only have 10 or so phrases of adult conversation for the whole day. I try to go out with the kids to break up the monotony and liven summer vacation up for them too, but ds always develops acute anxiety on the way out the door (no matter how enthused he was over a particular idea up 'til that point) and getting him to go from there on and just getting through the excursion becomes a big mental exercise and mental drain. This week's trip to the town library comes to mind...everyone staring at us with pursed, drawn lips when ds had a top-volume meltdown over some other child already there using the large building blocks they have in the children's room....he was even wearing one of his autism awareness-type t-shirts that day but no one seemed to have read it! I feel house-bound and very lonely; I'm starting to note that I get to feeling most down about ds in the summer months. If I'm rambling, I apologize; like I said, I haven't been getting much conversational practice of late (school's been out nearly a month around here).

Hannah

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Registered: 03-26-2003
Thu, 06-26-2003 - 1:19pm
Hannah,

I don't live on base but we are stationed in Florida right now. WE are only going to be here one more year (already been here a year)then my husband is retiring. I know exactly what you are talking about. It has been really hard to make friends and keep them. I worry in particular about my son who also holds grduges better than a betrayed old woman. I try really hard for him to get him into things where he can meet other kids with the same interests. By the time it seems that they are really getting along, something goes wrong and that kid is "blacklisted" by my son. I am trying to get him to work through these disagreements and for him to see that it need not be the end of a friendship because someone doesn't want to play his way (all the time). I wonder if it is really worth all this struggle because what is going to happen when we have to move next year? I hate for him to form a really good friendship only to break it up, but I guess that is better than no friendship at all. I've been told by a developmental pediatrician that my son won't miss friends because of the aspergers, but I don't feel that is really a true statement. Anyway, I feel lonely myself a lot of the time. I don't get out much and there are not many moms who are willing to "put up" with my son and their children. I try to get out and do things with him and meet other moms but it is tough, and sometimes depressing. The first year to year and a half is always hard for me. I guess I'm kind of like my son, just about the time I start having fun is when we have to move. Not really fun then. I need to go, someone is looking over my shoulder (not that he can really read yet).

Hugs, I know how hard it can be.

bless

bugs

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Registered: 04-01-2003
Thu, 06-26-2003 - 9:40pm
Hi Hannah!

I have a Hannah (she's my 5 yr. old PDD-NOS little one) and like your little guy, she has quite a few meltdowns in various locations that make it extremely difficult to have more than a 2 second conversation with another adult. What I found that has worked for me since I recently moved to this new town, is my trail-a-bike attachment. It's essentially a third wheel with handle bars, and the neck of her bike attaches to the seat of my bicycle. I do not trust her on her own bike unless we are in a small parking lot because she does tend to wander in the middle of the road. This way, we both get our exercise, we get out of our tiny apartment away from the tv, and we're ineracting with the rest of the community. I do it so much that a store-owner I pass often on the sidewalk actually came up to me in the supermarket yesterday and said, "Oh, you're the lady with the little girl on the bike." It's not much, but Hannah does not whine or fuss when she rides (she can choose to pedal or not because it does not affect your pedaling) and it wipes her out so she goes to bed without an arguement.

Another idea that may help is joining your local community pool or YMCA. I often take Hannah at unpopular hours so that it is not crowded and tense for her. She still has her meltdowns, and we still get looks from everyone, but it beats staying at home alone. Does your school have a support group of other parents facing similar issues that you could talk with or share ideas with? It might help make you feel less alone.

Hope this helps!

-Laura
Avatar for suitemadameblue
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Registered: 03-26-2003
Fri, 06-27-2003 - 10:16am
Navy housing resident here with a 7yo PDD-NOS, ADHD, (un-dx'd)bipolar, partially deaf son, Tristan. People frequently coming in and out, at least for us, tends to be quite the blessing. For the most part, if someone is around that has a problem with us, chances are that one of us will be leaving before too long, and then that stress is gone. On the other hand, some of the greatest resources and supports that have passed thru my life have done just that...passed thru. And when they are gone, it is extremely hard to find a "replacement." I have also found that the kids seem to get along better with Tristan than some of the parents do. Isn't it amazing how the children have more patience??!

One thing I have resigned myself to do is face-up to these people. Yes, it's harsh, and this took our entire 8yrs in the Navy so far to be able to do, and I have yet to master it!! BUT, rather than retreat and just stay away from those who are impatient and "huffy" and ruin what could be a fun time for us, I talk to them about why Tristan is "Tristan." Too often in this world, people are way too willing to just assume (HATE that word!!) that when a child acts up, he/she is spoiled and that the parents aren't paying enough attention, etc., end of story. Being military, the people around here seem to think that way even more often (Dad works all the time, may be deployed, kid is stressing about it). Yet, once I explain things, I tend to get alot of support. I've even heard on several occassions, "Wow, I really had no idea. He doesn't "look" like he is a form of Autism".....which sends me into even more info sharing! ROFL

So, yes I do feel isolated at times. But, to prevent that from getting too bad, I do my best to bring the others in, rather than trying to make us fit into their stylings. One way to do this that is pretty calm is to print out business-size cards with ASD informatino on it. The ones I have simply have the Autism ribbon on the front with a few web links (Autism Society, BBBAutism Support Board), and then on the back it says

"My child has Autism-PDD. Autism-PDD is a developmental disorder that affects how a person senses and processes the world."

This little card has helped in so many ways. It's non-intrusive, and tends to allow the person you give it to to approach YOU when/if they are comfortable. We have even left these at restraunts along with the tip, especially if Tristan has been rather unruly. I carry a bunch of these around in my business card holder (used to hold cards for me, now it's for my son!). In a pinch, they allow me to feel as if I have the upper hand. And some good friendships have come about because of it.

Hope this little bit of info helps!!


~Carrie

Hollyann(5.5yo, NT), Tristan(7yo, everything listed above!) :)

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Registered: 03-26-2003
Fri, 06-27-2003 - 1:24pm
Hi,

I understand how you feel. I just wanted to add to what Laura said. You need to find someplace to go so you can get out and talk to other adults and parents. Have you looked into any asperger or autism support groups in your area? I live in Canada and we have what they call Ontario Early Year Centres. They are my saving grace!!! You can go there and stay with your child and play. They have all kinds of activities and there is a teacher there to help you with any questions you might have. And best of all it's free!!

I hope you can find some place like this to get some support. We all need help sometimes and don't be afraid to go out and look for it.

(((((hugs)))))

Susan

There are 4 things you cannot recover.
1. The Stone.......after the throw.
2. The Word........after it's said.
3. The Occasion......after it's loss.
4. The Time.........after it's gone.
Avatar for maresgood
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Registered: 03-27-2003
Sat, 06-28-2003 - 12:47am
Hi, I think we all know & understand how you feel. I am going to an AS support group meeting next month if I can make it. It will be my 1st one & I'm nervous but I'm going to try it. My AS dd is 10 & I'm pretty much her entertainment comittee for the summer. I try to get her to call a friend or get together with someone, but she won't pick up the phone & call. She has an older sister which is half the reason why. I try to go for walks with my neighbor to get out so I don't feel isolated. I also work part-time so I'm with other nurses. She will start summer school after the 4th & I'll be happy that at least it'll get her around kids her own age. Anyway, I think we all feel for you. Hang in there, noone understands the situation we are in except for other "spectrum mom's"-MaryAnn
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Registered: 06-26-2003
Sun, 06-29-2003 - 11:17am
Thanks, everyone, for your thoughtful replies. It really helps so much to know other moms are in the same boat. Out of the three really close friends I've made here only to see them move away, I most miss my friend who also has a autism spectrum daughter. Truly we moms know we have a tough row to hoe. Where we're stationed is roughly the middle of nowhere; we went from the hub of everything in Montgomery County, Maryland (DC suburbs) to rural Louisiana. You want to talk about a seismic change? DS went from one of the top SpEd preschools in the country to one where I've had to more or less educate the (alleged) educators about autism! ("Are you sure he has autism?? Because he makes eye contact and everythannnng!"...this from the school psychologist in an IEP meeting...). I'm scared to death over this coming school year, when he starts kindergarten mainstreamed in a regular classroom; the school has no intention of providing an aide, and I just don't see it. But that's a whole 'nother tale. The grudge-holding/blacklisting issue is the real showstopper for me in being able to socialize casually on the street....DS is as likely as not to try and physically lash out at the other child when he or she won't leave him alone. And as you probably know, little kids often get even MORE in his face when he's acting like he wants them to go away or is ignoring them. Earlier this week I let him go to the end of the cul-de-sac to a little (low) wooden "fort" play structure with a just-turned 4 year old boy he's temporarily buddies with; however, that social success was rapidly tempered by me having to 'ground' him from going down there for a week, since he wound up pushing two other boys off of the darn thing. The support situation in this part of the country is pitiful: there is none. The closest support group meets at 7 p.m. some 50-60 miles from here over two lane roads....I don't generally drive at night under any conditions simply because I don't feel I see well enough, but I definitely cannot drive that kind of distance on those kinds of roads. The drivers here are downright scary, too.....I've already been hit head-on once in 11 months of living here and that's increased my leeriness. Give me a good old-fashioned divided highway, please. Which is a overly wordy way of saying that for practical purposes, there are no support groups in this area. Thank heavens DS was diagnosed and received intensive services while we were still in Maryland...that's the blessing in all this. He had a lot of sensory issues and did SI therapy there, too. Here, my friend that's now moved away had to drive 100 miles roundtrip twice a week to take her little one for therapy. You other military moms know that at least this isn't permanent; looks like about another year here and we can boogie. Now I have to research available services at Fort Campbell, KY, to see if that's a place we want to head to next. Anyway, thank you all for taking the time to post, I'm sure glad this board exists.

Hannah

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Registered: 03-26-2003
Mon, 06-30-2003 - 9:49am
Hannah,

This could be a long shot but is your son registered with family services in the exceptional child program? I'm not quite sure what they do but understand they are there to make sure you are receiving the services you need. My son is not registered because we have been happy with our services and my husband is getting out next year. What I think you should look into is getting an educational consultant/advocate before you get too far into the next school year. You can force the school's hand into providing the needed services for your child. If you can't get an advocate through the base I would do a general web search and see what you come up with in your general area. Or write to some of the bigger Asperger support groups on the web and ask them what you can do. Don't give up yet, I think there's still a chance yet.

BTW, your son sounds like my son to a "T." When he wants to end play or get kids to see things his way, he pushes them. Good news is, is that he is learning that is not the way to do things. Not always perfect but getting better.

bless

bugs

Avatar for suitemadameblue
iVillage Member
Registered: 03-26-2003
Mon, 06-30-2003 - 11:09am
".....family services in the exceptional child program......"

We are enrolled in the Exceptional Family Member Program (or EFMP). We have had Tristan enrolled since late '99 when we found out he had a hearing loss - and then updated it just last year with his ASD info.

There are different classifications of EFMP, with each one determining different things about where your husband can/will get stationed, etc (overseas yes/no, types of housing, and so on).

category 1: Needs do not generally limit assignments

category 2: Limited overseas/remote CONUS assignments

category 3: The medical or educational condition precludes assignment to overseas locations based on non-availability of medical and/or educational services at most overseas locations

category 4: This medical or educational condition requires assignment to billets near major medical treatment facilities

category 5: This category includes a provision for homesteading in an area where the service member can fulfill both sea and shore duty requirements; eligible families are those having an EFM with multiple/severe disabilities or medical problems, or highly complex educational requirements

category 6: (Temporary category) The medical or educational condition requires a stable environment for six months to a year due to ongoing treatment of diagnostic assessments


Tristan wil be a cat.4 once we are done here on shore duty, but is currently at a cat.6 because we need to remain here for at least another year or so to continue and stablize his treatments/therapies. Sure, it may limit the "neat" place we could get stationed, but I prefer that over getting stationed somewhere with absolutely NO services available to us whatsoever.

Something that many people do NOT know is that this EFMP is actually a mandatory enrollment - it's just that most TriCare reps/military docs neglect to inform anyone about that. Here's a link with some basic info about it (website is Navy, but the info is still basic enough for anyone)... https://www.bupers.navy.mil/pers66/efm.htm#what

If you already knew about all this, then forget I said anything! LOL :) Just figured I would share the info with you.

~Carrie

Hollyann(5.5yo, NT), Tristan(7yo, PDD-NOS, ADHD, sensorineural hearing loss, (unofficially) bipolar)

iVillage Member
Registered: 06-26-2003
Mon, 06-30-2003 - 4:12pm
Hi Carrie,

Yes, we've been enrolled in the EFMP program for years now. Unfortunately, the office here is utterly useless. They're civilians that just seem to do only enough as is required to keep their jobs. I have offered to help organize an autism support group here on post, advertise it, etc. etc. and all the EFMP office's big talk never gets anywhere. This was AFTER they'd advertised an autism support group meeting to be held on a Saturday morning (mind you, "advertised" might not be the best term, given that the only advertisement was in the post newspaper the DAY BEFORE THE MEETING!). I moved heaven and earth to make it to that meeting, only to find an empty parking lot, locked building, and no explanation as to why. That was a low moment, for sure. If I sound cynical and angry, it's because I am by this point in the assignment....originally I thought the people in the EFMP office were really there to help us. Experience has now shown me otherwise. Of course, I realize that's just here at this post. I really feel for parents with younger spectrum kids here, especially those yet to be diagnosed. The services are just not here and getting a thorough evaluation by a competent team is less likely than winning the "Pick 4" lottery! Heck, many of the kids here aren't even seen at the Pediatrics Clinic, but through Family Practice, as are a great number of pregnant women. Ironically, my dh had to sign a waiver of some sort coming into this post, relative to the EFMP listing, due to ds's asthma not being supported here. Little did we know.... But thank you for the suggestion; like I said, I'm hopeful that other EFMP offices aren't as pathetic as this one. (And hopeful that I get to try out a new one within the next year!)

Hannah