New here, looking for support and info

iVillage Member
Registered: 05-24-2003
New here, looking for support and info
12
Sun, 05-25-2003 - 1:04am
Hi all. I have been posting on all kinds of boards tonight hoping to get information. I hope you guys can help me

.

I am married with a daughter who just turned three. She is a fertility baby, and we had a very rough pregnancy. She was born prematurely, and spent 9 days in the NICU, coming home at 5 1/2 pounds. I did everything i thought i should do with her. Breast fed, co slept, kept everyone away to prevent her from getting sick.

When she was 9 months i went back to work. And i placed her in an onsite daycare. That is when the troubles began. She began to very sick, and many times i would walk into the room and find her over staring at the wall while the other kids were crawling around. i brought this up to the daycare, her teacher, my husband, the doctors. Anyone who would listen.

Needless to say i was blown off. At 14 months she recieved tubes in her ears, and she continued to get sick. I ended up getting fired from my job from being out with her so much. In the three months i was at home with her, she never got sick. She made good progress. Started walking at 14 months. At this point, i really noticed she wasnt talking. And she wasnt chattering, or gabbing or anything. Again, i started to complain to family members, and doctors, who continued to blow me off. I changed ENTs, i changed pediatricians.

Finally, at the age of 2, her ENT sent her for an ABR test, thinking she was deaf. She had no self control, wasnt talking, and surely didnt listen worth a squat. Her tests came back fine. Her hearing was perfect. Yet, no talking. She was enrolled in Early Intervention, and the month she turned two, they evaluated her and determined she was at a speech level of a 13 month old, and her motor skills were that of an 18 month old. She continually walked on her tip toes.

We moved from Texas to Utah that same month. Husband got a job transfer, and we hoped the dryer climate would help her chronic ear infections. (she was going through a bottle of mortin every two weeks, and in 6 months, had been on over 18 antibiotics.)

The day we arrived in Utah, her ears cleared up. We have been here a year. She has not had ONE ear infection. I have started taking her to a regular doctor, because i havent had great experiences with pediatricians. She hasnt seen an ENT once since being here.

She has continued to stay in Speech and Behavior therapy. As she has finally progessed more to her age level, the problems have really started.

She is obsessed with socks, light switches, our patio door, and toothbrushes. She wears socks on her hands, and sleeps with them. I have to hide them or she will wear them out in public on her hands. All the lights have to be on in the house. I am constantly turning off lights, only to have her turn them back on. i have replaced the safety lock on our patio door twice now, and have had to go to extreme measures to keep the door from opening. I have found her on the patio, standing on a chair, looking down over the railing. (we live in a second floor apartment). Ah, and the toothbrushes. Mine, hubby's, hers. They disappear. You can find them in the car, in her bed, in our subwoofer of my hubby's new surround sound system. She carried toothpaste around and eats it straight from the tube if i dont hide it. She cant even SEE them. If she SEES a toothbrush or toothpaste, and i wont let her have it, she slams herself down on the floor and slams her head repeatedly on the ground. OR, she will run into a door. Which ever is easier at the moment.

It has been determined by the behavior therapist she is hyper sensitive. We cant go to dinner then an arcade. Or Grocery Store and then Walmart. Getting in and out of the car repeatedly is hard on her. Plane rides, airports, etc. She has laid down in the middle of parking lots, on side walks, in stores and has had melt downs. (her melt down simply is a tantrum. A loud, screaming, crying tantrum.)

We have tried spankings, we have tried time outs. We have tried reward programs, such as stickers, ice cream, and band aids. (that is working for her now, her LOVE for band aids.)

I have found time outs work well, but only at home. Out in public it is kinda hard to time out her, so we usually have to leave where ever it is we are, and buckle her into her 5 point harness booster seat, and let her fling her arms and kick away, until she is over her melt down.

At the age of 2 1/2, her behavior therapist gave her a new toy, and then timed how long she would play with it. Now i am told toddlers usually have an attention span of their age. 3 year old, 3 minutes before becoming bored. At 2 1/2, she played with one single toy for 28 minutes. At 2 1/2, she could count to 20, count backwards from 10, count in even numbers, say her ABCs, identify letters, numbers and objects, not in order, knew shapes, colors, animals, etc. BUT, she wasnt talking in 2 or more word sentences. She gestured when she wanted something, and usually threw a sippy cup at me, or hit me if i wasnt paying attention to her needs right then.

She just turned three, and although her speech has improved, and i have learned to "work the system" as far as not going more than one or two places at a time, and seeing the signs when she has had enough. She can keep a perfect rythmn, she LOVES James Taylor and sings the words to his songs, but we cant get her potty trained.

My biggest fear is this one. She will go with ANYONE. ANY ONE! I found her last week (i was trying to bring in the groceries and my hands were full) trying to crawl into a car with a neighbor. A male. All the while i am calling her name, she is waving goodbye and crawling into his car. I go to the dentist, she is ALL over the office. They found her in another patients room, SITTING up in the chair with patient, watching carefully how they were cleaning her teeth. The dental hygenest, who had three kids, said she has never seen a kid with so much energy and said she had respect for me. When my hubby visited the dentist the next week, everyone came in to ask him if he was the father of the "cute little girl with the sock on her hand and that ran all over the place" He grinned and said "yep, that is her".

She also has NO fear. Of heights, or falling, etc. Went to the park on Thursday with a friend and her daughter. They were running up ahead of us, and we were coming up on a duck pond. I started running to get her, cause i KNEW she wouldnt stop at the pond. My friend said "NO! She will be fine, you are just too over protective." not 10 seconds later, my daughter jumps right into the pond, landing on her rear and was in water up to her arm pits. I had to wade in and pull her out. My friend felt horrible, but i told her AGAIN, my child has NO bounderies. She listens to NO ONE when you call her. And she doesnt have a fear of anything, like water... she just GOES. Runs in the streets, runs to complete strangers, jumps into ponds of water. We had to turn around and leave and bring her home to bathe her.

My daughter only eats cheese and chicken nuggets, and fish sticks. No noodles, veggies, etc. French toast or toast for breakfast. And bananas. That is pretty much it as far as meals go. i cant get her to try anything. i put mac and cheese on her plate a few weeks ago, only to have her freak out and fling it at me, trying hysterically to get it off her plate. She cant just ignore it, it was bothering her.

I have FINALLY persuaded our family doctor to consider Asperger's. After a month of doing research, she called me back and agreed i should get her tested. My neighbors have agreed something is definately quirky with her. Although her speech and behavior therapists still think nothing is wrong.

By the way, she loves to act out her movies. She memorizes every line, speaks when they speak, and physically acts out the scenes. Her favorite is bugs bunny. When Elmor Fudd is on the prowl, my daughter tip toes in circles around the living room as if she is looking for the rabbit herself. In one scene, Bugs Bunny runs to a door, grabs the handle, and then melts down to the floor. My daughter will run INTO the door, grab the handle and slide down the door until she is laying on the floor. Then recites his lines.

Everyone seems to think this is cute, and funny. I find it quite alarming.

Although she isnt violent most of the time, she is very social, loves ANYONE. And doesnt really rock or have a tick. She DOES shake or ring her hands together if she gets REALLY excited. But only for about 3 to 5 seconds. then she is done. She no longer walks on her tip toes. And her motor skills are finally up to about 2 1/2 year old level.

The state of Utah has declared her as "developementally challenged" and she qualifies for free preschool, which she will start in September. I am having anxiety about her being in a regular classroom and away from me. Although i would LOVE the three hours a day, three days a week to do things like get a hair cut, and go to the OBGYN (which you can imagine is a CIRCUS trying to do that with her), i just dont know if that is best for her.

We are right in the middle of trying to locate a Clinical Psychiatrist to get her tested, but having trouble locating one in the area that is taking patients. Will be talking to our insurance company again next week.

What i would like to know, from parents who deal with Autism, am i crazy?? I mean, i have been saying this for years now, and i feel like i am in the twilight zone. How can SOOO many doctors and "specialists" see this child and NOT notice something is not right. I am constantly told how smart she is, how she does things 6 year olds cant, but she cant do what 3 year olds should. There is NO conversations with my child. I cant reason with her. I cant explain to her why she cant go play, she just doesnt get it. I have friends who have 3 year olds who are potty trained, talk in complete sentences, and can carry on conversations with you. Mine only says "up please, juice". And usually she uses sign language for the please.

I am frustrated and tired. I am wondering if i am looking for something that isnt there. Or are my concerns valid... Somedays she is an angel, and other days i feel like i have 6 kids. My husband wants to try for a son, and i keep thinking he MUST be crazy. i think my daughter is all i can stand. She literally keeps me going from sun up til sun down.

Any help would be appreciated. Thank you so much

Helen

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iVillage Member
Registered: 03-26-2003
Sun, 05-25-2003 - 9:05am
Helen, first of all I would like to say welcome to the board. And second I want to say NO, YOU ARE NOT CRAZY. You just described 4 of the 5 autistics in my house in a single nutshell! I am not a clinician, I am a behavioral scientist, but if a mother came to see me with the list you posted I would have their child in to see the foundation's developmental ped ASAP. From what you described I would be looking at PPD, but I certainly wouldn't rule out AS (or HFA for that matter).

But I say PDD because your dd is having significant speech delays. One of the dx criteria for AS is 'no clinically significant speech delays'. HOWEVER, I am (along with quite a few people I know) of the opinion that treatable speech delays SHOULD NOT rule AS out. My 12yo dd was given a dx of PDD-NOS because she didn't start using sentances until she was 4. Everything else about her is typicle Aspie. She is reclusive, blunt to stating the obvious, has no sense of danger, falls off a stationary chair if she doesn't hold on, honest to a fault, has very little ability to recognise sarcazm (and NEVER gets my jokes....sigh), she rocks in her chair or rubs her forehead when nervous, used to go everywhere on tiptoes (still walks kinda funny), and oh, did I mention she has no cooncept of 'strangers'? When she was little all someone had to do was smile at her and in her mind they were her new best friend. VERY SCAREY. But she is incredably intelegent, she has an IQ of 167. She loves to read and has been doing so since just before she turned 4 (though not out loud). She can tell you anything you want to know about cats (all kinds) from the best ways to train them right down to their double heliix.

My 8yo dd is borderline between AS and HFA. Which reminds me, how premature was your dd? Jade was 9 weeks premature and had significant speech delays because of THAT. She didn't even use single words until she was 2. She she was given an AS DX instead of HFA because of two things. First, her ALLIS scale said that due to being as premature as she was that she wouldn't beggin talking until age 2.5-3, and that's exactly when she started so they took that as being an 'on-time' talker under the circumstances. Second, she is techniqualy 'of normal intelegence'. She has taken 5 different IQ tests and every time she scored 1-3 points ABOVE the mild mental retardation range. Except in the areas of science. Her #1 obsession is comology. But band-aids are right up there with cosmilogical conversions in her mind. LOL. (I just loved to hear you say that about your dd) We actually hide the band-aids in a locked room or we would never have any. And then there's tape, any kind of tape. She prefers to use tape for everything, from fixing her glow-in-the-dark stars when her little sister rips them down to mending the rips in her the knees of her jeans. We keep the tape on top of the fridge but we have to find a new place since she's gotten tall enough to reach it with a stool or chair.

And then there's my beloved dearest husband, a full fledged, full blown Aspie in his own right (something he is very proud of these days, LOL). He too likes the tape (sigh). But a least he has a job and can buy his own. Tee Hee. He knows all about manners and how to use them, but rarely sees the need, even when I'm turning red in the face. I can ask him a question and he'll act as if I'm not even in the room. He doesn't do real well with visitors, especially parties. Whenever we have a birthday party for one of the kids he tends to hide in my home office and doesn't resurface until sometime the next day. I used to get mad about him leaving me with all the party work but now that I know more about AS I don't mind at all. I have my work partner, Scott, and his wife come over and help instead. It works out because they love to do that kind of thing. (We have 6 kids, 7 if you count my foster son, so we have a LOT of parties and such)

Then there's my 3yo dd, Eva. A real piece of work, and I mean that litteraly. She works my tail off constantly. She is lovable and adorable but at the same time she seems arogant and aloof. She was recently dx'd as "ASD-PFS" which means Autistic Spectrum Disorder-Pending Further Specification. In other words she is still undergoing the full review proccess. To tell you the truth, I couldn't beggin to say wether she is AS or PDD. Sometimes she does something so 'Aspie-ish' like blatantly refusing to make eye contact or turning in tight little circles for an hour or more (until stopped physically). And then she'll demonstate original speech. By that I mean if I say "Say goodbye, Eva" she'll say "Goodbye (insert name here), I must leave now" instead of repeating my words exactly. But her speech is very stange, even though it is mostly original. She is extremely formal in her pragmatics. And she combines that with her personal obsession (school) to form the 'little proffesor' syndrome. Most Aspies have their routines and their obsessions, but she is the only person I know who is authenticaly obsessed with routines. She watches everyone as they go through their routines and then tells me all about them. "Daddy sets his alram clock for 5:30 in the morning. He pushes the snooze button 3 times before turning it off. He gets out of bed 20 minutes after that because......" etc etc etc. OR "Grandma drinks orange juice as her first part of breakfast. Always orange juice first, never pancakes, never milk, always orange jiuce first. Then she....." LOL, and people wonder how I know what every person in my family is doing at any given time of the day. I have a natural spy! Actually, when she starts talking about other peoples' routines she sounds a lot like Rainman...."42, deffinately 42". LOL. But she, like her older sister and dad, has no sense of boundries or danger. She walks outside without anyone with her all the time. She just decides she wants to go outside and does it. No matter how many times we explain to her that it is dangerous for a little person like herself to wonder off she just doesn't get it. One time she turned up missing and my other dds and I went out of our minds looking all over the neighborhood for her. Dd10 (one of the only NT's in te house) finally found her down at the comunity pool just sitting there watching the pool service guys go through their routine. She remembered that they always clean it on Tuesdays at 1 and trotted off to see how they did it compared to how her dad cleans ours. YIKES!.

Anyway, That's some of what I live with. My other three dds aren't on the spectrum, but my foster son has severe ADHD and OCD, so he fits right in. My grandmother lives with us too and she's an tried and true Aspie. But thankfully, she grew up in an era when social skills and manners were formally taught in the common place, so we don't have many problems with her (other than the onset of senility).

Stick around, I think you will enjoy this board. We tend to trade stories a lot as well as offer tidbits of the 'been there done that' kind of advice.

Again, welcome to the board,

Peace,

Candes

P.S. Oh, btw, the thing with your dd's ears sounds like a milk allergy to me. This kind of allergy tends to manifest when in humid climates. My parents moved me from LA to AZ when I was 3 because they refused to make me stop drinking milk and eating cheeze. I have since outgrown it, but I have a 5mo baby who has it, so she's on soy formula (we live in Northern CA but are trying to move to TX).

Peace,
Candes  
iVillage Member
Registered: 03-21-2003
Sun, 05-25-2003 - 10:36am
I agree with Candes, you described alot of our children in your

post. I know you have a plate full. My oldest

is PDD. He's 12 now and I've found out as they age

the behaviors change. He used to do alot of the things you described

with no boundaries, no fear of dangerous things (yet the things

that weren't dangerous like "Shoo flies" he would freak out---this

being the same kid who would run out in front of a car coming).

He wasn't potty trained until in his 4th year. Not afraid of

strangers. He will go up to anyone and ask questions over and over.

Even improper type of questions like "why are you fat?" "Why are you

short" etc. Has no sense of humor or cut downs.. ex: when kids

would say something mean to him he didn't get it as a cut down.

He took it as a fact. HE came home one day and said "Mom, what are

combat boots?" I asked why and he said "Because someone told me

you wear them in the bathtub"..lol

Now at age 12, he will laugh and attempt to tell jokes.

He repeats the word Poop all the time and laughs. He recites

lines from movies or cartoons, over and over. He still hits

the rewind button on the vcr like he used to at an earlier age.

(now we also have a DVD and use it mostly so he can't rewind it)

We had to go thru ENT. He had his tonsils and adenoids taken out, but

they had wondered if he was deaf (when he was younger). He was

2 months overdue at birth, weighed 9lbs 14 oz and broke his

collar bone on the way out. Traumatic birth. He went through

Rehab at infancy for developmental delays. Didn't talk either

he pointed, yelled, grunted until I would finally figure out what

he wanted. Learning to crawl when he would get mad he would bang

his head against the floor. I could probably keep going but, I'm

basically trying to say... YES, What you wrote sounds VERY familiar

and I agree that you should get him seen as soon as you can.

I have 2 other children and I had to try to protect them from him,

it was hard. Something tragic did happen when he was 3.. just one

moment slip in time can cause alot of damage. I sometimes

wish I would of spaced my kids further apart but they are

here and I love them and now that they are all 'pre teenish'

we are dealing with a different set of problems than when

they were toddlers...lol

I must say nintendos through the last few years have helped me

alot. My son didn't have much imagination to play with Toys but

electronic games caught his attention pretty good. Now that

he's 12, he started playing with imagination at about age 10.

He and my 9 year old boy are on about the same 'mental age' level.

Welcome to the board. I hope you find the information you need

and the hope and humor to guide you through the process.

Rebecca

iVillage Member
Registered: 03-26-2003
Sun, 05-25-2003 - 11:22am
Wow, your post brought back memories.

My dd is now 9. We got alot of "your just reading to much into things" when she was young as well. We worked in the field so people thought we just were seeing what we worked with and we believed them. We didn't even get her tested until she was 3. It took until she was 4 to get an accurate diagnosis.

She had tons of ear infections and tubes at 13 months. Had motor skills delays (walked at 16 months) and language delays. Knew all her letters, numbers, colors and shapes before 2 but couldn't put together a decent sentence and didn't understand me barely at all. She would talk in odd sentences too. At 3 she said "White car, yellow house want I" (my friend had a white truck and we lived in a yellow house). I didn't have a real conversation with her until she was 5. She was originally diagnosed ADD, language disorder, dyspraxia, hypertonia and sensory integration disorder. I was told she was not PDD because she made eye contact with the original neurologist when he walked in, even though she ignored him the rest of the time. My own pediatrictian didn't even want to originally refer her, we ended up paying for a speech eval privately. When it turned up delayed he finally ok'd a referral. All my friends thought I was nuts, she just needed more structures. We couldn't go anywhere with her without a tantrum pretty quickly. Same thing, 1 quick store was ok, but more than that she couldn't handle. I remember her once attacking me after swimming class when she was 4. The pool was closed so they sat and talked to the kids the whole time. By the time I realized they weren't going in it was too late and she didn't understand them when they explained it was closed. You whould have seen the stares the other mom's gave me. It is the first time in public I ever said, "she is autistic". She had tons of tantrums and was extremely loving and sweet particularly with adults. She really had little interest in other kids then, especially in preschool.

To get a PDD diagnosis, we had to get a second oppinion from a neuro that specialized in PDD. She also was in school then and I had reports from school of her having little interest in peers and her obsession with elephants. The neuro sent her to a neuro-psyche for testing who determined PDD-NOS.

At 7 a new neuro where we moved rediagnosed her with Asperger's because her language was age appropriate, but it is really debatable. Some would call her asperger's and some PDD. She still has some gaps in her language, but is also quite gifted so it is well hidden. She also tests barely in the average range but has a huge scatter in tests (some really high and some really low) so again her strengths and weaknesses offset each other.

BTW, the movies, that is my 7 y.o. son who is also aspergers.

Welcome to our board. I hope you are able to get more answers and support soon.

Renee

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iVillage Member
Registered: 05-24-2003
Sun, 05-25-2003 - 11:41am
Thank Candes... i read your post outloud to my husband. I LOVE your sense of humor. Of course, i guess with all the children and husband, you HAVE to have a sense of humor.

ALot of what you said is definately familiar. The glow in the dark stars. After several months of battling with her getting out of bed at night, we finally went to a flash light, which worked well until we started having to replace the batteries so much, and then we switched to glow in the dark stars. Every night when we put her to bed, we have to go through the routine of "Ready, Set, GO!" and i flip off the light. I leave her counting all the glow and the dark stars on her walls and ceiling. She gets a kick out of it, and it has solved our problem of her getting up.

She used to get up from 8 pm until 1 in the morning. Every 15 minutes like clock work. We couldnt figure it out. Again, we would try spankings, time outs, rewards... finally at the recommendation of the speech therapist, we gave her a flash light. Solved the problem.

I have really learned that i have to "manipulate" her into doing what i want her to do. I have to think ahead constantly. People will invite us over and i have to think "do we have anything else going on that day. Because i cant go over there in the afternoon if we have something going on in the morning".

My daughter was born at 34 weeks. But we originally went into labor with her at 30 weeks. I was given shots, steriods, two anti labor drugs, etc. The problem was, at 20 weeks they thought i had kidney stones. I was in severe pain for most of my pregnancy. i lost 30 pounds from the beginning of the pregnancy until the time she was born. (told my husband to hurry up and get me pregnant two more times and i can lose 100 pounds! he didnt go for it.) So i had surgery at 20 weeks. Labor at 30 weeks. i was taking so many drugs, including an anti bladder spasm medicines that specifically said "DO NOT TAKE WHILE PREGNANT". I had so many specialists, it was unbelievable. After she was born, she stopped breathing, so they placed her in the NICU on a vent. But once she got over the apnea, she was pretty good. Brought her home. She had reflux until she sat up. But other than that, didnt think much of it. at 2 weeks POST, i was diagnosed with gallstones and had to have another surgery. So i had three surgeries in 6 months. all while i was pregnant, having the baby, or breastfeeding.

my mother in law started in on me to have another baby when Catie was 8 months old. i asked her if she was smoking crack. last Fall she came up to visit, and because i have a warped sense of humor, i sent HER to the park with Catie, while i took a nice long bath. Talk about someone changing her tune when she came back in an hour.... I said "oh, back so SOON???" She said "My gosh Helen! That kid NEVER stopped. I had to chase her ALL OVER THAT PARK. I mean, from one corner of the park, the other corner of the park. i am exhausted." i said "now, imagine trying to do that while you are 8 months pregnant." She said "i will NEVER say another word about another grandbaby again." She had taken a camera with her to the park, and when i saw the pics, it was hysterical. They were all of Catie, running, and all pics were of her back. And each picture she was getting further and further away as my MIL was having trouble catching up with her. LUCKILY, i was smart enough to see this before hand and i had sent my husband with her. Sometimes playing goalie seems to work better than cat and mouse!!

I grew up in California, Long Beach area. We moved back to Texas when i was 12. And i have family who lives in Lousiana. And my question to you would be WHY do you want to move to Texas??? hehehe, it is HOT there. I couldnt WAIT to get out of Texas. Salt Lake has been very nice as far as weather. Maine would be nice too, but has no economics. And i wouldnt mind living in California, but there are too many people.

As far as your husband goes and his reclusiveness during parties... i myself deal with problems like that. I hate going to places where i dont know anyone. Went to a good friends small wedding. I didnt know anyone in her family, or the grooms. ANd i went alone. When it was time to toss the bouquet, i slipped out the door and headed to car to get something i "forgot". She was so mad at me.

other times she would invite me to hang at a friends house with her, and i would avoid it like the plaque. If i dont know them, i dont want to be around them. I have high anxiety about meeting new people, and find that i am quite the hermit. I keep to myself alot and would rather sit on my computer and write novels than go out and meet new people. I have tried to be upfront with my husband, and he has helped me out alot with it. But i can go a week with out leaving the house. Not even to check the mail. I find i am much more comfy here then i would be out at the park or in a public place. i mean, i will GO. i do the grocery shopping, and to movies and such. Last summer, i even went to a James Taylor concert all by myself. BUT, i DID get there 2 hours early to get a first parking space, i DID get to my seat and i sat there from beginning til end, and then i HURRIED to get out of there. lol, needless to say i do take Zoloft for my anxiety. I am a compulsive cleaner, and things have to be in order. I cant go to bed with something in the washer. I have to have vaccuum streaks in my carpet at all times. And i bathe Catie ATLEAST once a day. There have been days when i bathe her two and three. My friends laugh and say that is the CLEANEST kid they have ever seen. If we have to go somewhere, i usually bathe her before we go, and depending on where we went, i bathe her again when we get back. only if it involves dirty hands, or food. I cant stand to send her to bed thinking she has food or dirt on her.

LOL, so, i think my kid gets all this honestly. My husband was in gifted and talented classes in school. he did well in English, played football and was on the newspaper staff. Always made A's and B's. He is very laid back. I on the other hand, did very poorly. Would sit in a class and had a very time understanding what was being said. I learn by seeing. English i ALWAYS failed miserably. And i ALWAYS made a's in math. I could SEE math. I couldnt SEE how to diagram a sentence. Made NO sense to me. i spent my summers in high school in summer school, and never even WANTED to try college. I am very uptight, and usually my mind is racing 20 to nothing.

Although we dont have autism in our family, i have no doubt she got her quirkiness from us. We are just quirky! lol, luckily my husband accepts my faults, although he does call me a freak from time to time, and i enjoy his ability to go with the flow. Where i react instantly.

Thanks for the invite to stick around on the board. i will definately book mark it and visit frequently. Thanks for your wonderful and entertaining post.

Helen

iVillage Member
Registered: 05-24-2003
Sun, 05-25-2003 - 11:48am
Thank you for the warm welcome!! WOW! two months over due?? DD was born at 34 weeks, and i felt like i was 18 months along. I cant imagine being pregnant for ten or eleven months.

My brother was a month over due, and he weighed 9 and 1/2 pounds. He was 27 pounds at 4 months. He grew up to be a slender, 6 foot 1 man who can eat a horse. But everyone always wanted him on their team in sports! lol

Thank you for the support and it is really nice to know i am not alone.

I will stick around and keep you guys posted on the testing. Thanks again.

Helen

iVillage Member
Registered: 05-24-2003
Sun, 05-25-2003 - 12:10pm
Thank you for your response. I have just picked her up and hauled her out of resturants and stores over my shoulder. LOL, i get irritated alot. We rarely go out to dinner anymore because i refuse to pay 30 bucks to have my meal interupted, be miserable, and slam food down my throat so we can hurry up and leave. Not to mention all the other people around us who pay 30 bucks to go out to dinner, sometimes with out their kids, to enjoy a meal and my kid is having trouble staying in her seat and is acting out.

Dd too has gestured and grunted. We play the "what do you want" game. "Want this? no? want this? no?" becomes VERY frustrating. Usually she ends up crying or throwing a fit because i just cant understand what she wants. When i finally figure it out, i am relieved that is it over and we can move on to something else.

DD will also pass up children and go to the adults. She LOVES adults. And many people find her facinating. She will sit down next them and say "HI! How are you?" and they say "How are you" and she says "I am chillin'". That is the same thing she will say EVERY time. I am chillin'. I have NO idea where she got it. But most people crack up when they hear it. "Did she just say she is chillin?" yep.

Also, her other thing is "Sure." Do you want ice cream? "sure" Do you want Cake "Sure" do you want to jump out of a plane in Africa? "Sure!" LOL, so i cant go by her answers if she really wants ice cream or cake.

Thank you for the warm welcome and support. I will stay for a while, atleast until i can get her in to be tested.

Thanks

Helen

Avatar for maresgood
iVillage Member
Registered: 03-27-2003
Sun, 05-25-2003 - 3:13pm
Hi, I'm new here also within the last 6 mo. I'm an R.N. & had never heard about A.S. although I knew of autism & had seen autistic kids. I was in denial for many years with my dd. I just recently had a diagnosis at age 10. I knew from pre-school that her behavior was odd! When you mentioned the cartoon characters & the voices it reminded me of my dd. She has been memorizing movie lines for years. She also does all of the voices too. Now she has taken on a British accent from Harry Potter. Everyone thinks it's cute & funny but it becomes annoying after awhile! She, like you daughter also has her obsessions. My dd's change every few months. She memorized the school directory last yr. She knew all the names of the kids & their addresses. We had to hide it from her, but she would search for it! Anyway, it sounds like your dd is on the spectrum. Do whatever it takes to get a diagnosis. Fortunately the school district paid for most of mine. Good luck to you & hope to see you around- MaryAnn
iVillage Member
Registered: 05-24-2003
Sun, 05-25-2003 - 4:12pm
Hi MaryAnn-

I have never heard of Aspergers until about 3 months ago when a friend of mine called from Florida. Her son and my daughter shared the same pediatrician in Dallas. After her son had this THIRD set of tunes put in, and developed Asthma, she moved him to Florida. Thinking it would be better on him. Now he has a central line, a bone behind his ear drum is infected, and she had to have his tonsils removed. Come to find out, he was allergic to Penicillin, the same stupid thing they had been giving him his whole life.

I have had such a hard time getting the doctors to test my daughter for allergies. So we moved. And her ears cleared right up.

But at the same time my friend in Florida brought it up, my neighbor upstairs brought it up. And then it kinda snowballed from there. I have always known something wasnt right, but everyone, including family, would brush me off. After a while i felt like they thought i was looking for something to complain about. So i stopped telling them. Now, when they find out we are going in for tests because we may think we have a form of Autism we are dealing with, they all say, "There is NO way she can be autistic. She is just too social. She is such a sweet and caring little girl."

I dont think people really understand that not ALL children who have a form of autism sit and stare at the wall and rock. There are different forms, like all other disabilities. And i dont want my child treated differently, i just want her understood. I want to be understood. When i say, we have had a bad day, i want someone to say "i can imagine" instead of "well, i have 4 kids, you shouldnt be complaining."

So, it is nice to hear from other women, and men, who understand how you have to work around them. And with them. i compare her alot of the times like having a one year old. You still have to be right there all the time. You still cant understand what they want when they want it. You still have to baby proof your home, carefully choose who you leave them with, and you are still exhausted every night when you go to sleep. You do feel isolated at times, and you do feel frustrated. You want what is best for your child, and you want them to be treated fairly. And given a chance to be the people they were meant to be.

Thank you for your post. I am really benefitting from all the wonderful posts i have been getting. Thank you all so much.

Helen

Avatar for kingalex
iVillage Member
Registered: 03-27-2003
Tue, 05-27-2003 - 2:59pm
A delayed welcome from me, Helen! You can find lots of support here, because we all have been there in some way or another. My son, Alex, just turned 6 years old, and is Asperger's. He was born at 39 weeks after an uneventful pregnancy (high-risk, though, as I was 40 years old). Talk about a high-maintenance child (mind you, I wouldn't trade him for anything in the world!)!!! He was first diagnosed as developmentally delayed at about 2 1/2 by his pediatrician (who nicely said, "he seems to march to the beat of a different drummer"). He was officially diagnosed by the school system as high-functioning autism, as they don't have an Asperger's classification by itself; it falls under autism.

He still isn't potty trained, but could tell you the capital of almost every country in the world (did you know that South Africa has three capitals?!). He can also name every make and model of car on the road (as well any classic car he sees a picture of). Most kids beg for candy at the supermarket; Alex begs for a new car magazine each time we go.

He has so many rituals he follows; when we put him to bed at night we have to go through about an 8 step routine before he'll stay in bed (one of them is that he has to put on his wristwatch, so he'll "know when to get up in the morning" - he can't tell time yet, though). He usually sings from the moment he gets up in the morning to when he falls asleep at night. There's nothing quiet about him!

Almost every day a note comes home from his kindergarten teacher about not paying attention, making loud noises, or being defiant. He's in a regular classroom, but has a resource teacher in with him part of the time. He also receives OT and PT services at school. I think this summer we're going to find a behavioral specialist to help with the potty issue - NOTHING has helped so far. He could care less if he sits in wet or soiled underwear.

I don't have any answers, but know you're not alone! I've often felt like I have six kids, too!!!

Laurie

Laurie

iVillage Member
Registered: 03-26-2003
Wed, 05-28-2003 - 6:37pm
We need to get out of CA for finacial reasons. We simply can't afford to keep living here. Between Dh and I we have an annual income of over $140k and we're barely surviving. If we had only 2-3 kids I'm sure it would be different, but then again I'm not so sure.

Our foster son was placed with us privately for financial reasons. His parents couldn't afford anything larger than a one br apt and CPS decided that it wasn't acceptable for the boy to sleep on a daybed in the livingroom. They were told that if they didn't either get a larger place or make other living arraingements for their son that he would be put into a foster home. (Like THAT'S really a good thing for the poor boy either.) So late one night we got a phone call from them asking if Scotty could come live with us for a year or until they could afford to buy a house. We have a huge house and since Scotty was over here almost all day everyday anyway(his uncle and I run our home-schooling co-op from my garage), we said yes.

Now, one might think that they couldn't afford a bigger apt because they don't make a lot. But that's not true. See, Scotty's parents make a combined income of $65k per year. The problem is the cost of living here in CA, especially here in the SF Bay Area. Right now they are renting a studio apt to help them save money. The studio costs $1,100 per month, and that's WITHOUT the utilities!

We have been lucky because about the time we needed to find housing in this area my dgm (dearest grandmother) was in need of living assistance. So we moved in with her. Her house is absolutely massive and accomodates all of us comfortably. We have taken over paying the bills and such, but thankfully the house is paid off. The other houses in our neighborhood sell for around 1.3 million. And believe me they AREN'T worth that much, that's just how bad the housing shortage is here.

Besides, my ILs live in TX and are really looking forward to us coming out there. FIL even bought us a small ranch already and is in the middle of having it renovated. And DH and I love the heat. As DH says "Heat good, snow bad." LOL. We'll miss the moutain skylines and the green stuff (I think they call it grass, tee hee) but considering we're trading a 1.3 mil, 6,000 sq ft house for a $108k, 6,300 sq ft house (on 5 achres) I think we'll adjust. Besides, I think our neighbors are tired of the blood curddling screams at 3 in the morning.

Peace,

Candes

Peace,
Candes  

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