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New Roll-Call - Page 3

post #41 of 70

post #42 of 70

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.
post #43 of 70


I have seen the villiage and I don't want it raising my children
post #44 of 70
Thread Starter 
My dd has the same set of issues as yours - how old is yours? Mine is 4.
post #45 of 70
She just turned 3 in June
post #46 of 70
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
post #47 of 70
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!
post #48 of 70

I'm new...

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!
post #49 of 70
Thread Starter 
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.
post #50 of 70
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.
post #51 of 70

Re: First post - hello!

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!

post #52 of 70
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.
post #53 of 70
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
post #54 of 70

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.....
post #55 of 70
I am so so sorry. That just breaks my heart.
post #56 of 70
to all of you, i hope posting here helps you in some way. your kids are all so special i am sure!

love, jenny
post #57 of 70
Originally Posted by popsickle1969
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?
post #58 of 70
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!

post #59 of 70
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.
post #60 of 70
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!
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