New Roll-Call [Archive] - MotheringDotCommunity Forums

flminivanmama

03-11-2003, 01:57 PM

I'm Andrea and I have twins who just turned three who were born at 29 weeks. they have global developmental delays, and sensory integration disorder. one much much more severe. the one who is more severe has low muscle tone, proprioceptive issues, vestibular issues (the other one has vestibular issues too), self stimulates verbally (ie screaming, spitting, and making other noises that are very ummm annoying) and also needs deep pressure and briuses himself by pinching himself (gawd I hate writing all this down) he seems to feel no pain at all - he fell on the playground on sunday from the monkey bars so hard that everyone around heard the thud and he just got up and kept on playing... he also stuffs food in his mouth and will keep something behind his teeth for hours... he also has bowel problems due to the low tone and he always either has diarreah or constipation
I also have a 21 month old who was full term but is not devoloping speechwise b/c he has "innapropriate role models" :rolleyes:
okay that's it for now...

willibug

03-11-2003, 05:21 PM

Hello!

I am mom to 3 kids, ages 2, 4, and 7. My 7yo has Tourette's Syndrome and occasional bouts of OCD. We are homeschooling him for first grade after public schooling him for kindergarten.

I'm glad this forum is here. I do not post often, but I am a big reader. Just wanted to let everyone know I'm here, and I'll try to be better about posting. I'm on the quiet side in real life, too:) !

joesmom

03-11-2003, 05:24 PM

nice to meet, or remeet, all of you!

i have often posted here about my best friend's daughter, hannah. she was dx in 2001 with pdd. i have known her since her birth & she is closer to me than if she were my niece.

i am so excited because i have just been hired as hannah's in home mental health aide. 20-30 hrs. per week i will be in her home, helping her, playing with her, just loving her. she is amazing. i am planning to just follow her around & do whatever she does, all day long. i sat with her, on her dining room table one day, & stacked plastic cups w/ her over & over again. i kept thinking, why am i having SO much fun?! but i was!

a friend has a child w/ down's syndrome, she was w/a group of her friends who were all discussing their children. one of them all of a sudden looked at her & said, oh, we are SO sorry. she was like, sorry for what? they were apologizing for talking about their "normal" kids in front of her. she is so awesome, she said, don't apologize to me, i feel sorry for YOU! not one of them has a relationship w/ her kids like she has w/ hers.

i tried & tried the other day to MAKE myself feel sorry for hannah, & i truly could not think of one reason. she is amazing.

peace & love to you all in your journeys. i am so glad this forum is here!

love, jenny :hippie

kater07

03-12-2003, 10:57 PM

Hi, I am Katie with a nearly 8 month old DS who has Hirschsprung's Disease. He has a colostomy now. We haven't scheduled his pull-though just yet, but it will be done in April, May or June.

Glad there's a board here for me.

peggy

03-13-2003, 07:12 AM

Just wanted to say WELCOME!! to everyone!!

princess buttercup

03-13-2003, 07:45 AM

I am step mommy to a kiddo who has been diagnosed as PDD (non specific).
I also have an extensive background in working with and advocating for Individuals with special needs. I managed a group home for some time and then worked as a technician and evaluator in an Assistive Technology Center. We worked with people of all ages and disabilities and did assessments, evaluations, implementation and training for the local school systems.
glad to "meet" everyone!
andrea

Mommasgirls

03-13-2003, 07:50 AM

I'm Laura SAHM to Samantha age 5. We are currently testing for ADHD,OCD,TS,and Aspergers. Abigail is her little sister who will be 3 in April.
DH has MS.
So we keep pretty busy around here:)

momma7

03-13-2003, 08:04 AM

hi there!i have a soon to be 13 yr old ds called ali.he ws delivered by a former o.b. who delivered him 6 wks early because i was crying too much.he had trouble at birth.all his life he's had problems and was given several diagnoses.he's usuall considered learning disabled.he's my heart!:love :hearts

latinmom

03-13-2003, 11:59 AM

Hi! I have a dd, Sara, with ADD and severe dyslexia! So far, the ds's seem ok(but its hard to tell when their two!)

Deb

TreeLove

03-18-2003, 07:54 AM

Hi. I'm Shannon, mom to 3 boys and a baby on the way. My twins were born at 29 weeks due to TTTS and the donor twin, Emmet has a heart defect. He also has PDD, FTT, asthma, right-sided weakness, speech problems, and SID. Gus has PDD, and I'm in the process of getting him tested for SID. My 2 year old is perfectly normal 'cept he lives here! LOL! The baby I'm carrying has me worried, as I lost a tremendous amount of blood at 11 weeks. Time will tell.....

Star Baby

03-18-2003, 02:51 PM

hey there,

my daughter is almost fourteen months old and she has down syndrome (as you may have noticed from my little replied shout out to all the ds mamas :o)

i'm glad to meet you and hope that we become a support to one another.

~ star baby

Els' 3 Ones

03-22-2003, 10:41 PM

Hi everyone.

My name is Ellen and I have 3 children. 8yo dd, 5yo ds, and a 4yo ds with down syndrome. His name is Duncan. We all call him "pie guy".

El

apmomto4

03-28-2003, 03:06 AM

I'm Kelly. Homeschooling Mom to Elizabeth (almost 12), Jonathan (8 - Autistic), Matthew (3), and Kathryn (14 months)

annakiss

04-04-2003, 12:25 PM

new to all of this... I'm Anna, SAHM to Aleksander, born with a WIDE complete unilateral cleft lip & palate. He's 7 mo and has had two reconstructive surgeries on his lip & soft & hard palate and is scheduled for a third in May. I tried joining a cleft discussion group online, but never got any response, so I'm here.

He's done pretty well, but had breathing issues at his first stay in the hospital (was way too doped up on coedine, so second time around we made the nurses be careful about the doseage) and then didn't eat for five days after his second surgery and got dehydrated, so he had to have an IV (the original one from surgery he kicked out of his leg) put in his head. He couldn't breastfeed at birth (couldn't form suction), so I've been pumping for 7 1/2 months, feeding him with a special cleft nurser. He's been a tough scar-former so the surgeon thinks he needs more lip revisions.

He might be done with all his surgeries when he's in his early 20s. He's got lip revision at 3 yo, bone graft & lip revision at 8, braces maybe at 8, rhinoplasties (nose jobs) that won't start til 16, and then I think he'll get a tooth implant at 20-something for the section of gum he's missing. He'll also probably need agressive speech therapy. He's a great baby though, loves his mommy and rides in the sling.

pmjmomma

04-12-2003, 11:23 PM

My 3 year old dd has a profound phonological disorder, mild gross motor delays, sensory issues and some autism spectrum behaviors. She's also got the best sense of humor that I've ever seen on a kid in my life.

My 5 year old has also always had sensory issues, but I think we didn't notice them for a long time because she was cognitively and physically advanced for her age. She seems to be mastering a lot of her issues with age and attention, which is great.

We homeschool, and for our family, this is the best situation for the girls continued growth and development.

I'm looking forward to spying on the collective wisdom of all of the mamas here, and hopefully adding a bit of my own :D

lilyka

04-14-2003, 08:50 PM

Hi I guess I belong here to. Madeline is 6 1/2 and has SID (thanks to he stay in the NICU where she didn't bel;ong in the first place). Lilyka is 3 and starting to imitate her sister :rolleyes: and Ava is 4 months.:binky and innocently unaware of the complete chaos around her.

Sandra

SunRae

06-22-2003, 05:08 AM

Hi, I am Rachel and my six month old son Samuel has Down Syndrome. He is our first baby.

I previously spent time on the TTC boards and then the Pregnancy boards here, but since Sam was born in December haven't logged in more than a couple of times. I felt like my issues were too different, I guess (plus, who has time when they are caring for an infant?). What I'm trying to say is I was very happy to find this forum tonight.

I just realized the other day that for the first time since Sam was born, I am 100%, completely, totally okay with the fact that he has Down's, and wouldn't change a hair on his beautiful head. It's not that I've been upset for six months, but there has been a tiny part of me that at times has felt sad, cheated, envious, or overwhelmed, despite my intense love for my wonderful boy.

Today I am really at peace. Wishing the same for all of you,

Rachel

p.s. to Anna - pumping for 7 1/2 months!!!!!:jaw I am so in awe of you! I only made it for 11 weeks before the pain and exhaustion got too much for me (I had poor flow because of having had breast reduction surgery). Now I get donated milk from the Milk Bank. Aleksander is so lucky to have you as his mama!

annakiss

06-22-2003, 10:00 AM

Welcome, Rachel. I wish you and Samuel all the best.

An update on Aleksander (if it's okay to post this here) - He's now 10 months old & just had his 3rd surgery Tuesday the 10th of June (almost 2 weeks ago). This surgery went great and he was home the next day! He's been a bit grumpier than usual, but he's stopped waking up in the middle of the night for his Tylenol dose and is back to his usual destructive behavior (even at this moment, there are cheerios all over the office floor).

I'm also still pumping, though at the moment I'm taking fenugreek trying to get my supply up because he keeps eating me out of house & home!

Nikki Christina

06-29-2003, 03:00 AM

Im Nikki. Mother to David who is 5 & has a rare Genetic disorder.. Peroxisomal Disorder..
he is severaly disabled.. has very low muscle tone.. blind. hearing impaired, g-tube fed, tracheotomy.. you name it

heres his site & has a link to his story.. its lonnnnnnnnnng though.. so if you got a few hours..lol :p
http://www.angelfire.com/hi3/davidsweb/Page1.html

mlia

07-10-2003, 08:44 AM

Hi! I posted on the other roll call before seeing this one so I will cross post my reply!

By the way Anna that's wonderful you are pumping. I only made it 6 months. My daughter couldn't nurse either do to her heart condition that went undiagnosed til almost 4 months. At first she was being classified as failure to thrive.

Have you ever seen the yahoo group pumpmoms? They have LOTS of great ideas on increasing milk supply.

I'm Leah and I have a 9 month old named Salem with heart problems. Her biggest issue is hypertropic cardiomyopathy where basically the heart muscle just works too hard and thus thickens. She is on a beta blocker and we do routine echos and ekgs to make sure it's still working. She also has pulmonary stenosis, a mytral valve leak and a VSD. The pulmonary stenosis may cause a need for surgery later.

http://www.besthearthealth.com/heart.nsf/diseaseswebview/hypertrophic+cardiomyopathy

Because of her heart problems and a couple of physical markers she is being screened by a geneticist for Noonan's Syndrome. The geneticist saw her at 6 months and said she had a couple of markers but not a lot and we go back to be re-evaluted at 1 year. Unfortunately they don't have the genes isolated that causes Noonans so it's a purely clinical diagnosis.

http://noonansyndrome.org/home.html

mamabean

07-22-2003, 09:45 PM

just posted this on the other roll call
ds is 2y.o. dx shortly after birth with renal insufficiency secondary to posterior urthral valves. progressed to end stage renal dieses at 10 months(started dialysis).failed transplant at 24 months(my kidney)and is scheduled for transplant # 2(from a way more than generous friend) on 8/7!

Bestbirths

07-24-2003, 12:57 AM

Hello All,

I am Mom to a 14 year old with Multiple Chemical Sensitivity, or Environmental Illness, who also struggled with an eating disorder this year. My 10 year old has dislexia. I have three other children also, five all together. We unschool. My son is the Youth representative for the MCS Beacon of Hope foundation. You can see his story at www.mcsbeaconofhope.com

Asquaredmom

07-26-2003, 10:14 PM

I'm Kathleen, mom to 2 DD's, Zoe dob 6/20/98 and Ariel dob 5/16/2001, wife to DH Mark.

Zoe appears to have ADHD and may have SID. She has attended a pre primary impaired class in our public school district since Feb. 2002.

She has been taking Ritalin for about 6 weeks now and her summer school teacher thinks it is helpiing her attend better to tasks.

She was initially qualified for the PPI class for speech delay and delay in fine motor skills.

She does poorly on standardized tests due to her lack of ability to attend. She definitely perceives the world differently than DH and I do! We're never sure how much she actually understands. We don't know if she is not paying attention, cannot understand, or cannot respond.

Discipline is a huge issue. My parents perceive there is a lack of it and my father now ignores her as much as possible when they visit. :( He does however, shower her sister w/affection & attention.

Zoe is a very happy, outgoing, personable, and energetic 5 yo.

We hope she will thrive in a regular kindergarten class this fall w/a full time aide.

Sincerely,

MommyS

08-18-2003, 08:51 PM

My name is Sarah and I am the proud mother of Nevin. He was born 2 months premature and spent 108 days in the NICU. So far we don't have a diagnosis but "THEY" think he has a form of muscular distrophy. He has had very low tone since birth, which is improving slowly with physical therapy. Swallowing has been our biggest challenge. Nevin was unable to swallow, therefore he has a feeding tube. He is doing some swallowing now, but it's still very weak. I'm very excited to be a part of this group! I am finally feeling like I can talk about some things and feel this would be a great outlet. :)

amma

08-20-2003, 06:32 PM

Hello,
I've been lurking around this thread for some time now and decided to join. These last few weeks have been emotional for me, for reason because my sweet and very bright four year old son, has been going through evaluations. Yesterday, was his first evaluation and after three hours for four tests, taking turns with other children we were very worn out. My son seem to have a blast with some of the children so it wasn't too bad, but now we have to continue evaluations at a local elementry school tomorrow. I have a feeling that all the teachers main concerns are getting them ready for kindergarden. I felt the teachers/staff at the evalutions looked down at every parent that walked through the door and this upset me. I am thinking of homeschooling my son and I'm going to tell them tomorrow. I'm pretty nervous as to what they are to say about homeschooling in general. I also had a question if anyone here on mdc has heard of Semantic Pragmatic Disorder or have any children with this diagnosis? Sorry this so to the point but my ds needs me so i'm trying to make it fast. Thankyou

Bestbirths

08-20-2003, 09:04 PM

Amma,

Hi, and Welcome! In many states the law states that a child isn't even required to go to school until age seven. You could check out what the law is in your state. As a veteran homeschooler I have found that I don't need to tell the school what I am planning (beyond a phone call to say we will be homeschooling and a simple internet registration with our particular state). I surely don't have to go there and ask what they think about it. Its like asking a republican what they think about the democrats, you are bound to get an earfull of opinion on one side or the other.

What solidified my homeschooling heartiness more than anything was when something tragic happened in our family and someone said, "You know, this wouldn't have happened if it weren't for homeschooling". It is something to think about, your triumphs in your child's education will usually be considered by the other camp to be "inspite of" homeschooling, or just dumb luck. And, if anything tragic or unfortunate happens in your life to your family, it will be because you are "weird" or "homeschooler", "homebirther", "a little left of center", etc.

The bottom line for us is that we have decided to do what is the best fit for our family. It just makes me want to be more focused and give my absolute all to make their homeschooling experience the best it can be. Reminds me of the song that goes....'thanks for making me a fighter'. Anyway....if it were me I would avoid the whole confrontation at the testing office and keep my plans to myself. I pick my battles and that is just one I would recommend RUNNING from. I have never heard of your son's disorder, but I think that homeschooling is the same for all children in that it is catered to each child's specific needs. I think any homeschooling group in your area would be great for support. Is there a homeschooling group near you that you could check out?

wemberly

08-20-2003, 10:06 PM

Hi, I'm Paige, mama to 4 yr old Elliott, who was adopted at 6 weeks. Elliott has sensory integration dysfunction, a regulatory disorder, and a central auditory processing disorder. Elliott's been in various therapies since he was 22 months, and is making steady progress. He still isn't comfortable enough in his own skin to consider traditional schooling, so we'll be homeschooling. Really, it's the only the choice for my spirited, extremely bright boy who is easily overwhelmed by noise, movement, people, etc. Unschooling has been totally successful for him--Elliott discovers something amazing everyday and his self-esteem remains intact.

Amma--here is a link to semantic pragmatic disorder. I was an Early Intervention Specialist in my pre-Elliott life, and am somewhat familiar with the disorder. Feel free to get in touch if I can give you any additional information.
http://www.geocities.com/denisev2/

Piglet68

08-20-2003, 11:07 PM

I wasn't the mod here when this thread was started, but I wanted to jump in and welcome all our latest visitors to the Special Needs forum.

:w

amma - you might want to check out the Schooling at Home and Beyond forum here at MDC to learn more about homeschooling. You didn't say why your child was having "evaluations" done, whether it was your own wish to have a diagnosis, or whether it was required by the school you were planning to send him to. If it is the latter, you may decide not to bother with them anymore if you wish to homeschool (and that's just one more great reason to do so).

Welcome to all of you!

amma

08-21-2003, 07:51 PM

hello,

I wanted to thank you ladies for the warm welcoming and clear up a question piglet68 had concerning the reason why I had the evalutaion done. My ds went to a preschool last year and the teacher/caregiver suggested him getting the evalutations. I also had my own intuition that he may need to be evalutated. We went back today for the second evalutation. This time it was more exstensive and took more time which he didn't have to share the time with other children. I fet that he was looked and evaluated much better this time. As for diagnosis we have not received any as of yet. I was just curious as if any one here had heard of SPD (sematics pragmatin disorder). Thankyou for the link, wemberly. I didn't say anything about homeschooling although they mentioned that he may quilify for the preschool at the school. Which would be every day noon- 3:30 and he would ride the bus. I didn't say much in response, but I know that he couldn't handle that much at one time. He's a runner whom dosn't like to leave any situation and would fight you for it. I wouldn't be able to trust anyone from keeping him from danger. Tomorrow, I'm going to talk with someone about the whole evaluations. I'm nervous...ahh but I'm glad i've done it.

TwingleyMom

08-23-2003, 05:44 PM

Thought I should introduce myself! My name is Jennie and I'm the proud mom of 3 boys, Matt, AJ and Charlie. Matt & AJ are 4.5 yr old identical twins - born at 29 weeks due to TTTS (I saw another mom with a similar by-line!).

Matt has a visual impairment and has worn glasses since he was 10 mths of age (result of severe ROP & laser surgery). He was also recently dx with mild spastic diplegia and some fine motor issues.

His twin AJ was dx with PVL (periventricular leukomalacia) at 4 weeks of age leading to a dx of spastic quadriparesis CP at the age of 6 mths. He has also suffered from infantile spasms (they cleared up themselves!!) and more recently he is quite prone to febrile seizures. He commando crawls where he needs to go, tries to self feed, etc. He is ambulatory in his "Pony" walker and he is learning to use a Kaye walker.

The twins start school a week Tuesday! :eek They will both be attending the school at the local treatment centre where they will be in a class with 4-5 other kids which will be super for them. They have attended full time daycare (from Sept 2000-Jun '03) so they are used to being out all day in a school like setting.

Charlie is our newest addition born in Feb 2003. He's a big fat chunky monkey compared to our 2lb and 2.5lb twins! He's as big at 6 mths as AJ was on his first birthday. Quite a shocker how easy one healthy unaffected "normal" child can be. :)

Looking forward to getting to know everyone!

silliest

08-29-2003, 05:12 AM

Hi :-) I'm new here.

I'm Selena, SAHM to the kids in my sig :-)

Samantha is 3, and recently dxed with "primary impulse control disorder". As her mom, I strongly suspect Asperger's Syndrome (which I also have) and/or bipolar disorder. she is developmentally uneven, but as she is not "delayed" in any area, the professionals say there is no developmental problem. I say she is "disordered", not "delayed" and needs help. We're still arguing over this :-/
She is a tantrum-prone, unpredictable, little person wiht no apparent tolerance for frustration, she *requires* rigid routines soemtimes, and other times goes with the flow brilliantly. It's aggravating. We have a "safe room" for her, so that she doesn't hurt herself while raging. It has caused some misunderstandings with visitors who don't understand why her bedroom is so barren. They think we're depriving her. She is also on Prozac, which seems to be helping, but it's only been a month, so we're not sure yet.

Rhianna is 1, and she is totally behaviorally and developmentally "typical" for a one-year-old. And a very, very happy person :-) She has Gastro-Esophageal Reflux, which we have been successfully treating with Zantac since she was about 2 weeks old.

Brendan, my husband, is a diabetic, and on an insulin pump.

I, the Aspie, am on Celexa, which I love, and I'm also an allergic asthmatic :-)

We are a home-birthing, sling-wearing, unschooling, hippy-dippy hairy-legged sort of family <LOL!>

Nice to find this forum!

Bestbirths

08-29-2003, 08:23 AM

Silliest,

Welcome! :hippie

GranolaMoon

08-29-2003, 03:34 PM

Hiya :hippie

My dd has sensory integration dysfunction, asthma and allergies. I don't consider her older brother special needs, just harder to cook for, he's celiac.

Bestbirths

08-29-2003, 04:40 PM

I have seen the villiage and I don't want it raising my children :rotflmao

khrisday

08-29-2003, 07:54 PM

GranolaMoon,
My dd has the same set of issues as yours - how old is yours? Mine is 4.

GranolaMoon

08-29-2003, 08:50 PM

She just turned 3 in June :)

Mama Bee

08-31-2003, 07:13 PM

Wow! Where to even begin.... I am SOOOO glad to have found you guys!!!

The light of my life, my PRECIOUS, PRECIOUS, PRECIOUS (did I mention, I'm quite smitten?) 18mth old son, Andrick, has Down Syndrome. Before he was born (we knew nothing of his condition before birth), my husband and I had decided Attachment Parenting was everything we wanted in a parenting style. We read all the books and made the commitment to having a fully-intact, co-sleeping, cloth-diapered, breast-fed, naturally birthed baby boy. When Andrick arrived we were shocked, grief stricken, scared and completely freaked out by the diagnosis and all that goes with it. Andrick was also diagnosed with an AV Canal defect shortly after his birth.

Anyway, I am a SAHM and a Navy Wife. My husband deployed two weeks after Andrick was born. I was left at home pumping furiously for a newborn baby who did not have enough energy to eat. Because of my grief and lack-of-knowledge, I let go of a lot of the ideas I had before his birth about the things I thought I would/should be doing with/for him. I did, however, continue to pump until he was fully recovered from heart surgery (about five months).

To make a long story short, I have recently met a WONDERFUL woman who I am very proud to call friend who reaquainted me with the wonderful world of AP. She helped me remember why I believed so fervently in it in the first place. I realized, through her example, that even though some aspects of AP didn't work out for us I am still completely dedicated to this way of life. I just forgot for awhile. I was still doing the right things.... but was also beating myself up for things beyond my control. My new friend introduced me to Mothering Magazine/mothering.com and a whole new supportive circle of friends. I am once again beginning to feel comfortable in my own skin and loving the life we have chosen.

For all of you who made it through that.... thanks for listening. What a relief it is to not only find people who have the same parenting values as me but also have the added knowledge about loving a child with special needs. I think I'm finally home! ~ Brook :love

Bestbirths

08-31-2003, 10:00 PM

Wow. IlaBrook, that just brought me to tears! We are going through such trials right now with our ds, and your words were eloquent! Welcome!

popsickle1969

09-03-2003, 11:52 PM

I'm showing up for roll call...PRESENT!

My story is pretty much the common autism story. My dh and I worried about D when he wouldn't respond to talking, but damn would he run to the TV when he heard the rugrats theme song! That was at about 18 months. D is awesome. Classically autistic, moderate to severe was his dx about a year ago. He's three now, and it's funny how these kids progress though, it's pretty amazing, but not typical in any sense. He is just starting to really try to say words, so it rocks that he's at least motivated to communicate. Right now we just want so badly for him to talk, ie: to express his desires/feelings. Oh, he can do it, express his wants, that is, but it's gestural, and we also use the picture exchange communication system. Sensorily (don't know if that's a word) speaking, he's a hyposensitive kid so he takes alot of work to play with. Lots of sensory motor play, the rougher, the better.

My two major problems as a mom with an autistic kid is:

1) Autism is a condition for the rich. What I mean by this is that my son's therapy is limited because our finances are limited. I would love more than anything to have a behavioral program for him in our home, 30/35 hours a week, but that costs upwards of $20,000-$40.000 per year!! I'm always amazed when other parents are doing this type of therapy! (We do home based play therapy right now w/D.) Who has this kind of extra money other than the rich!? And if you do happen to be in this type of therapy, I hope your state pays for it. Here in MI, no one does anything for us. And the kicker for me is... MEDICAL INSURANCE SHAMELESSLY DENIES COVERAGE FOR AUTISM. PERIOD! I'm still amazed every day that goes by that the people in power let this happen.

And secondly, and this goes for all parents with kids with special needs, I hurt so badly. In my heart. And I know it's my bad, but I can't seem to let go of the typical life of a child/teen/adult that I thought my D would have. The daily unanswered questions of his future constantly enter my thoughts. It is a constant struggle of wits, will I let it break me? NO! I can't. I always have to go on, or the whole thing will fall. This burden only other parents would understand.... So thanks for listening. And I look forward to talking with everyone!

khrisday

09-04-2003, 12:04 AM

Hey popsicle1969,
Welcome to the board (as well as the other new members)!
I can totally understand what you mean about Autism being for the rich. Not only is the therapy expensive, the training, equiptment, childcare, etc is unbelievably expensive as well.
BUT many school districts are now paying for in home programs (starting at age three), and there are other ways to get services covered. If you are in the US, you may be eligible for SSI disability payments, Medicaid, or other state or federally funded services.
If you're in the US, let me know what state and I can look up some info for you.

pepsi

09-16-2003, 03:28 PM

Hello,my son is 4 he has learning difficulties and has the speech age of a average 2.6 year old.
We are waiting for more Evals then hopefully we can get another diganosis.He has ST and they have kept him behind a year in school while we wait for a personal aide.

Cinder

11-20-2003, 02:35 PM

Originally posted by TwingleyMom
Thought I should introduce myself! My name is Jennie and I'm the proud mom of 3 boys, Matt, AJ and Charlie. Matt & AJ are 4.5 yr old identical twins - born at 29 weeks due to TTTS (I saw another mom with a similar by-line!).

Hey Jennie, I just thought I'd welcome you over here!

-Jillian

KarenEMT

11-28-2003, 05:06 PM

I'm new too. I'm Karen (31), mom to Anthony (9 yrs old, has Asperger syndrome) and Victor (22 mos old). My DH also has Asperger's, not diagnosed by any medical professional, but a light just went off in our heads after our son was diagnosed.

Anthony is just getting to the age where he realizes that he doesn't have any good friends and that he's "different," and it can be very difficult. However, he's totally smitten with his little brother and loves him so much! He's even asking for another brother or sister in a few years. Anthony's in 4th grade at a very small private Christian school and is doing great academically, but has had a few scrapes behaviorally.

I just knew from the beginning that Anthony had some kind of problem, but everyone told me I was doing something wrong as a parent. He didn't want to be held too much and never made much eye contact as a baby/toddler. He had terrific tantrums which he never grew out of. He was a pretty early talker, so I assumed everything was OK (silly me).

I look forward to meeting everyone here!

He was diagnosed with Asperger's by a developmental pediatrician when he was 8 yrs old.

birthmommom

07-26-2004, 08:27 PM

Well i just posted on the original roll call,

but i still dont see anyone with this, my dd has bilateral clubfoot. Meaning that both her feet were turned in at birth.

this is nothing compared to what a lot of parents on here deal with, just looking for ap families with this disorder.

god bless all of you and your wonderful children

RileysMom

07-27-2004, 09:13 PM

Hi,

I'm new to this forum, but not to MDC. My precious girl Julia that was born back in Nov. had to have a routine surgery in January (for a small birth defect of her rectum) Things went horribly wrong and she coded 3 times over the span of several days. She now has severe hypoxic brain damage, cerebral palsy, and is cortically blind.

I'm really struggling with anger and grief for my baby right now and probably won't be posting too much.

But I miss the MDC community very much.....

sparklemama

07-27-2004, 11:41 PM

I am so so sorry. :( That just breaks my heart. :crying

joesmom

07-28-2004, 10:48 AM

:hug to all of you, i hope posting here helps you in some way. your kids are all so special i am sure!

love, jenny

PikkuMyy

07-30-2004, 09:07 PM

And the kicker for me is... MEDICAL INSURANCE SHAMELESSLY DENIES COVERAGE FOR AUTISM. PERIOD! I'm still amazed every day that goes by that the people in power let this happen.

I work with kids with autism, and I just had to pop in and say that this is an issue that I believe to be particularly important for "activism" activities. My student really needs more speech therapy than he gets in his pre-school special education program, and he can't get it through his medical insurance because they define autism as a "mental illness"! This drives me nuts because we all know that that type of diagnosis went out the window many years ago with the "blame it on the moms" diagnosis. But some people still believe that kids with autism just need psychoanalysis to discuss why they are so angry at the world. How my student would discuss his issues with a psychologist is beyond me. He can't talk!

Anyway, ranting aside...I didn't know about this until a few months ago, when his parents were looking at what to do about his transition to kindergarten. Those of us involved with autism should spread the word about this. In fact, I'm going to do some research to find out if there are groups working to have this changed.

joesmom - do you know anything about it?

USAmma

07-30-2004, 11:37 PM

I think I introduced myself on the other thread, but things have changed a bit so I guess I'll post again. lol!

First of all I'm so moved by the strength and wisdom of you all. I used to bypass this board because "Special Needs" was so foreign to me and I didn't even want to really think about it. But here I am, and you know, it's not so bad. :)

My 3yo dd Abirami is gifted, spirited, spunky, defiant, a real handful. I admire her spirit but I fear she's going to to have a really hard time making friends and will lead a lonely childhood. Sigh. We are not sure what she has, she's still being evaluated, but for sure she has some ADD, probably some SID but that part is not impacting her too much, she's grown past the gagging and food aversions, and learned to rub herself in her room, learned not to walk on her toes outside of the home because others don't do that. But she screams for no reason, mimics what others say when she's in non-structured environments, and quotes a lot from movies. It's like she just doesn't know what to do with herself during free play situations. Also soon to be evaluated for a sleep disorder because she has bad insomnia at night and I often find her playing in her room by the nightlight at 2 AM. But she's a good girl and most of the time she tries. She's very loving and snuggly, my first born, my teacher.

Nitara, my 6mo, started out in-utero with preterm labor which required months of bedrest and terbutaline. Born healthy at 38 weeks but immediately showed signs of GERD. No one listened to me, said it was colic, even though she wasn't eating well and not growing so well and screaming for hours and hours.

Anyway, at 3mo she decided not to eat anymore and landed in the hospital where she was finally diagnosed properly with GERD, Failure to Thrive, Sandifer's Syndrome (siezure like behavior as a result of the pain), and feeding aversions. We were sent home with her on an NG tube which she is still on 3 mos. later. She eats okay during growth spurts and we think maybe she's getting better, but then 2 days later she's back to taking 2-3 oz. per feeding and that's it, getting dehydrated and it's so frustrating. So the tube goes back in. It kills me to have to push that tube down her nose, she screams and looks at me with pain in her eyes, and then turns off for a few hours and won't verbalize or look anyone in the eye.

So, as much as I dread it I think she's going to be getting a gtube soon. I am scared about the surgery but at least hopefully after it heals our lives will be less stressful and the trauma will stop. She has started feeding therapy recently, too. If anyone's child is on a gtube I'd appreciate some reassurance or some tips on what to expect.

My dh has never been diagosed, but after talking with MIL he showed many signs of SID and Abi's doctor wants him to get evaluated for ADD which I'm relieved at, because I've thought he had it for years. He also had a severe feeding aversion as a baby and was fed by dropper from 2-9 mos. because he refused breast and bottle, vomited a lot, cried a lot, and only ate limited food until he was 5. So there's something going on there, whether he had GERD or it's purely sensory, but something's being passed down to our kids.

Anyway there's my long rambling post. I need to be in bed right now sleeping while I have the chance!

Darshani

IfMamaAintHappy

08-03-2004, 08:23 AM

Funny, I remember doing this before, but maybe it was just my general intro.

Anyway, I'm Jeni, WAH mommy to Grace and Lily. Grace began having seizures at 14 months, totally out of nowhere. At first, we thought the seizures might be related to the Pertussis vax she received less than 6 weeks before the seizures began, but we are thinking less in that direction now. (She never finished her series with DTaP and Lily wont get the Pertussis vax).

Grace's first seizure was a simple partial with secondary generalization. That means that it started out with her focusing off to the right, hitched breathing, and during the course of the seizure, she made small motor movements but not flailing. Her second and third seizures were grand mal seizures, one right after another, one week later. Her fourth seizure, later in the evening after the grand mals, was another simple partial with secondary generalization. All of these happened when she was asleep or coming out of her first cycle of REM sleep.

She was put on phenobarbitol and given a diagnosis of unspecified seizure disorder. She had no seizures while medicated. She had no siezures for 2 years unmedicated.

In March of this year, she had a series of myoclonic seizures one evening, whwn we were taking a babysitter home, so she'd been asleep about 45 minutes. She was given an EEG, it came back normal. Three weeks later, she had a 4 minute simple partial with secondary generalization when she was laying listless on the recliner after a fever and a nap. This one had her straight out and prone, arms curled in and quivering, chewing and speaking motions with her mouth, and that same hitched breathing, and greyish pallor. For a half hour after the seizure, she went in and out of consciousness and could not speak at all. After that, she ate dinner, and then slept for 14 hours.

She was seen by the neuro, but no tests were given for several weeks. She had a 24 video EEG and an MRI. The EEG revealed that she has a slow generalized alpha variant in her frontal lobe (and I dont have the first clue what that means, and would love to have her evaluated by someone to see if it has bearing on behaviour or learning disability or anything of that nature... where do I turn for that?). It is slow/normal, but slow enough to be a red flag to the neuro. Her MRI revealed a lack of myelin in her frontal lobe, specifically on the sides close to the temporal lobes. She has an appropriate amount of myelin for someone half her age. All I know about this part is that myelin helps imulses move smoothly from nerve to nerve in the brain.

Grace had a complex partial seizure in July one evening after a long nap. (Grace never naps, When she naps for a few days in a row, it is a clue for us). She was wringing her hands, telling us to "get it off", she was having a very hard time speaking clearly, expressive speech was difficult, but she as processing what she was hearing fine. She sometimes said nonsense words, and you could almost see her brain trying to access the correct words for a sentence and place them in order in a really halting manner. Her gait was abnormal too, just an odd walk.

Her neuro and I agree that because she is not having seizures very often, or out in public, usually associated with sleep at night or with napping, that we dont want to medicate her right now. If her seizures get closer together than every few months, perhaps. He seems to think that the activity (which doesnt show up on an EEG) is probably in her left temporal lobe, as speech is so affected each time.

So, she does not have a diagnosis. Something to do with myelin deficiency (that may correct itself with age) and seizures and a slow normal alpha variant.

Glad to have you here to talk to!

When she has a grand mal, her speech and cognition recover very quickly. When she has a simple partial or a complex partial, it takes her about half an hour to recover speech and be clearheaded.

Goldiemom

08-06-2004, 12:43 AM

Hi I have been around for a little bit but figured I would join in the roll call since it has been booted to the forfront again. I am Leanne mommy to Adam 4 and Harley 1. Adam has be dx'd as moderate/severe autism, vision impaired {lazy eye}, possible ADD and now we are in the process of finding out if he is prone to seizures. His EEG came back with "spikes" in several areas of his brain that indicate he is predisposed to them. I have no idea what that means, but hopefully in the next few days and weeks I will get more info out of his neurologist. My dd is developing on schedule which is a relief since we are facing so many issues with ds. Glad to be here and best wishes to all the mommies!

abjb

08-10-2004, 05:14 PM

Hi I am a SAH/homeschooling Mom to two daughters, Mackenzie is eight and Fiona is four. Both have Celiac Sprue (dx about a year ago) and Fi has type-1 diabetes (dx at 13 months). It can feel at times like I am the only AP type mom with kids who are not totally healthy but it has been humbling to read all of the posts here and see that many more struggle with far more than I.

I look forward to hearing how all of you cope and come out smiling!

Cheers,

Jenny

grnbn76

08-15-2004, 01:18 AM

"Mackenzie is eight and Fiona is four. Both have Celiac Sprue (dx about a year ago)"

We're part of the celiac club here, too.
I have CD, as do my three older children (7, 4, and 2). Odds are the baby (7wks) will have it, too. Just makes it easier to cook for the whole family! Poor dh just has to go along with it, otherwise he'd starve to death!

I am also the older sister and co-guardian of a 22yo brother with just about every "disorder" there is. ADD, OCD, RAD, SID, PDD, as well as many others. He is also classified as mildly mentally retarded, though not "retarded enough" for benefits. He has no impulse control and no "memory of recognition"...meaning he can burn himself on the stove on Monday, have a hand full of blisters, and touch the stove again on Tuesday because he forgot it was hot. He has been aggressive and violent since his toddler years. He is also one of the most loving people I know.
He was born 3mos early and weighed 1lb, 15oz. For a long time, he was the smallest baby to be born and survive in our state. He was institutionalized for about 15 years, as that was the only way my family could get funding for him at all. He's gone through the programs of 7 different placements, but they've still never "fixed" him.
He is currently living at home and working a part-time job, which is an amazingly huge step for him. He is treated with a massive combo of meds, diet, therapy, and behavior modification that has made him capable of living in a home with a family (unreachable before now because of his incredible need for schedule and routine). He functions on the level of an 8yo mentally/emotionally, and a 12 yo physically.

LiminalOne

08-16-2004, 01:52 PM

Hi there

I'm Angie, mama to 3 yo Finn, who started having seizures in April of this year. He's currently diagnosed with idiopathic generalized epilepsy and they're still not under control. He has grande mal seizures (though not frequently) and daily myoclonic (single jerk) and absence (starting and nonresponsive). We do have him on meds--both depakote and zonegran and are hoping that we can get them under control. We're also trying all sorts of natural approaches (homeopathy, cranial-sacral, removing all gluten from our diets), but some days, I just feel discouraged spending so much on the alt med stuff. But what can I do. I can't not do everything in my power to "fix" it.

ging-ging - Good luck with your dc and I've been soaking up lots of info on epilepsy so pm me if you want to chat. Have they totally ruled out metabolic causes???

Our thoughts with all your families...

sully

08-21-2004, 07:40 AM

thoesly

08-21-2004, 10:27 AM

I just realized I never posted here. Which seems odd since I was so happy to see this thread resurrected. Anyway . . .

My oldest is 5. He has autism, asthma/allergies, sensory integration dysfunction, oral-motor defensiveness, and the sleep and food issues that often accompany these things. His diet is gluten-free, casein-free, yeast/mold-free, soy-free, and dye-free. He spent 2 years at an autism integrated preschool, and has made wonderful progress. Now, he is starting kindergarden on Monday. I'm nervous, but optimistic.

My daughter is 3. She hovers on the fringes of the autism spectrum, but she does not technically have autism. She *does* have dyspraxia, sensory integration dysfunction, auditory processing issues, low muscle tone, anxiety, and separation anxiety (which looks different than the "separation anxiety" that is tossed around so carelessly on the mainstream boards). She starts preschool on Monday. I think she will do well there (she liked the open house we went to on Thursday), and I know she needs to go, but I worry about her more than I do about my son with autism.

My baby will be 23 months next week. He has speech and motor delays and sensory issues. Hopefully, that's it, but this is the exact age his brother was when he regressed into autism, so I'm watching him nervously. Hopefully, he will benefit from what I've learned (no vaxes, organic food, etc) and be okay.

Glad to see everyone here,

Tara

mamasun

08-24-2004, 09:04 PM

Here we are:
I'm mom to a five year old, who would most likely test in the gifted range, according to the preschool we attended for a while, but we've decided to homeschool, which has been wonderful for us.
My second is a fifteen month old twin, born at 33 weeks, diagnosed with Trisomy 21, or Down syndrome, while in the NICU shortly after birth.
My third is brother to his twin, fifteen months old, also a preemie. He had gastro issues and a surgery for an extreme umbilical hernia shortly after birth.
All boys!!!
We are a crazy quilt of strengths and challenges, and I love all my guys to pieces.
Jennifer

mommy2boys

08-25-2004, 10:51 AM

I realized I haven't posted to the new roll call.
I am Erin SAHM to Sade 4.5 and Ethan 2.
Sade has high functioning autism. Some days he seems so completely normal I swear nothing is wrong and other days he seems so autistic. We were told the only thing consistant with autism is inconsitency.
Sade is starting preschool on Monday and I'm really nervous. He gets agressive when he gets overwhelemed. I am already consider homeschooling very seriously. Lately it seems he has been regressing. He is back to echoing us a lot and his body ticks are more frequent. His speech is still not close to where it needs to be for his age and its hard to carry on a conversation at all with him. We are playing with diet, we got him allergy tested which all came back negative. The good news is he does show affection to us. Not nearly as much as our two year old but he does give hugs and wants me to rock him to sleep.

MommytoMJM

08-29-2004, 09:18 PM

New Member

Join Date: Aug 2004
Location: Rockledge, FL
Posts: 12
Hi All- New to this part of the board, thought I'd pop in towhere I feel I most belong!

Our daughter was adopted at birth in Feb. 2001. She was born to a birthmother with about 12 different risk factors, among them were alcoholism, prescription and street drug addiction (the scripts were ativan, dilantin and trazadone, particularly bad), advanced maternal age, poor health, chain smoking, homelessness, no prenatal until we entered the picture at the beginning of her third trimester and borderline gestational diabetes (as if the rest of it wasn't enough! LOL) Marjorie (the "baby" she'll always be my baby even tho she is a toddler now) has severe CNS delays, some dysmorphology and had retarded growth for her first 14 months (until we had a g-tube put in, a fundoplication done and figured out that she was allergic to corn.). I know what she has is at the very least FAE/FASD if not full blown FAS, mild Hypotonic (becoming hyper as she ages), Hemiplegic cerebral palsy, dyspraxia, Hyposensitive Sensory Integration Disorder (the more rare of the 2 types), she eats almost zero food by mouth, talks very little (apraxia) but does do some minimal adaptive American Sign Language. Lately, they have also been throwing around the PDD/NOS DX. We consider ourselves very lucky, although she does have quite a few issues, she is so much better off than we were told to hope for. She is a complete joy to be with and like almost all special needs kids has the greatest spirit even through all of her therapies, hospitalizations, etc.

lottietottie

09-04-2004, 05:08 PM

Hi. I'm mom to a 16-month old daughter with unexplained motor and verbal delays. Her mouth is usually open and drooling. She's just beginning to stand, doesn't speak any intelligible words yet. She's easily excited, and once excited tends to stiffen her body or go into the fetal position, hands and arms flapping.

We didn't really realize something was wrong until she was about 6 months old. She wasn't rolling over or sitting yet, and her head tilted to one side. Her eyes tended to cross, too. A MRI and vision screening came back "normal," so we moved on to physical therapy, which helped get her head aligned. We've continued with that. She sat up unsupported at 11 months, crawled at 13 months, and has now begun to pull up and cruise. Her social skills are fairly limited. Eye contact is brief, attention span short, and she isn't interested in imitating sounds or gestures. We've got some metabolic tests arranged, but what if they come back "normal" too?

I'm stumped, overwhelmed, lonely (moved 5x in three years), and not getting much support from the husband or family. As a newbie to Canada, I'm also grappling with an unfamiliar medical system. I struggle with my own depression and frequently feel like just letting my daughter play by herself, even though I know my interaction makes a huge difference to her. I hope being a part of this community will give me inspiration to keep doing my best for my daughter. You all seem so supportive and positive. Pleased to meet you.

pilesoflaundry

09-05-2004, 06:22 PM

I have posted in this forum before but not on the roll call so here goes...

I am Jackie, sahm/homeschooling to 3 kiddos. Alex is almost 6 and for awhile I was in denial about what was "different" about him, many of my family and friends picked up on something not being right with him, so did I but hearing it all the time made me more in denial kwim? Finally I got him evaluated when it came to the point that I had no choice but to realize that he isn't just a bit more hyper than other kids. His ped said he is definitly ADHD (emphasis on the HD) and probably bipolar, with the possiblity this is behavioral problems with a medical cause. From some of the things ds has said the doc thinks he might be having migraines or seizure like activity in the brain. We will be seeing a neuro soon to rule that out. If that comes back normal then the next step is a physch eval. and bloodwork to rule out anything else. He has some sensory issues also so we are working on diet changes to see if this is food allergy related.

I have wondered about him since he was 3, now I'm sorry I waited so long, he could have gotten help sooner. Anyway..now it's become a worry about the safety of himself and my other kids so this needs to be checked out.

My 2.5 year old dd Daria is "normal" except for her eczema and lactose intolerance which are nothing compaired to trying to deal with my son!

My baby Eliza will be a year old this month and is "normal" as far as we can tell at this age. She does seem to have "flat head" syndrome, I will speak to her doc about that one. We tried our best but she would never sleep in any other position and moving her after she fell asleep would always wake her up only to have her go back to sleep in the same spot.

There is a very strong family history of depression, ADHD and bipolar disorder on my mom's side of the family, everyone that has kids has at least one if not more than one child with at minimum depression and then there are the ones of us with worse issues.

My dh I have wondered alot if he doesn't have add (not the hyperactive, just the serious attention deficit and fidget issues, he can't sit still) so there is that family history also. Every day I just pray for patience and that my ds is the only one that is affected. I have patience but I'm not sure how much I could take if more than one of my kids has a disorder. I :bow to you all that have more than one SN child!! :hugs

I have chemical sensativities and some allergy induced asthma attacks. If I avoid my triggers I'm fine, it's just harder to avoid them in public or if we visit people. At home I'm ok because we made it 'safe'.