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#601 of 735 Old 11-03-2008, 01:07 PM
 
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Hi! New to having a Special Needs child - my son is 12yo and was just diagnosed with Type 1 Diabetes. He's doing well after a brief hospital stay - Blood Sugar is still fluctuating wildly though. Would love to hear from other parents who deal with this day to day!

Thanks!

Homeschooling Mom of Matt, 20; Lydia, 19; Alex, 16; Liam, 14; Jack, 7; Kiara, 5; Seamus, 3 and ??? March 2013. http://mishahogan.com trekkie.gifbikenew.gifknit.gif

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#602 of 735 Old 11-05-2008, 06:53 PM
 
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Hi! My special needs daughter is 7. She is repeating first grade due to not being able to read and struggling with writing and spelling. She has an IEP for speech, physical therapy and special ed (mostly reading, writing and spelling since she is awesome at math). She is finally understanding reading, so I am happy and her spelling is much better this year. She goes to PT 2 times a week and has shown a lot of improvement. I almost cried when she kicked a soccer ball and catched a baseball this weekend! Last year she couldn't climb, catch, hit, jump, skip, hop, etc. She still needs a lot of work (mostly climbing and skipping and hopping) but it is getting better. She needs a lot of work on speech. She goes to speech 2 x's a week. She goes to special ed 30 minutes a day.

As a baby she has always been behind. She didn't walk until 2. Didn't talk until 2 and couldn't put a small sentence together until 3. She was behind on socialization, learning, potty training, etc. However, she was always a happy kid who loved animals, math, music, art and science! She rocks at those subjects. She works very hard and always wants to study and learn. She recently was named student of the month and I was so proud of her since she worked so hard to get 100% on her spelling tests and other assignments.

Amber (31) - Married to my high school sweetheart for 13 years, mom of 4 amazing kids (ages 12, 8, 3, and 16 months), homeschooler, and expecting our 5th child around May 18th!
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#603 of 735 Old 11-07-2008, 11:34 AM
 
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Well, it's official - ASD. So now we do a ton of therapies and pray, I guess, and make sure he knows that it's worth it to interact with other people.
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#604 of 735 Old 11-07-2008, 11:34 AM
 
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Hi everyone,
My name is Maria, mama to 4 kiddos. My child with special needs in 5 y/o, and he has Down Syndrome and dysphagia. Would love to connect with other mamas of children with DS, G-tubes etc. I also have a son who is 8 with Aspergers Syndrome. Im off to check out the boards, I havent been to this site is ages!
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#605 of 735 Old 11-07-2008, 06:30 PM
 
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My five year old son Zale has had problems since birth; refulx, multiple severe food allergies, absorbtion issues, seizures starting at 15mos, anemia.He also has sensory itegration issues and is avery high needs kid. He has been diagnosed as having anxiety disorder, ADHD, and Turretts, but I think that he is actually recovering from Autism as we have been treating (intuitively) for autism since he was nine months old. We have been GF/CF since 11mos. WE are currently trying to get help in terms of coping with some of his behaviors (major meltdowns and stimming behaviors) but feel frustrated that most of the therapies are very behaviorist. Has anyone found good help or had any success with non behaviorist therapies? We are also trying to nail down all of his allergies as I feel we are missing some and figure out his gut issues, but our pediatrician keeps telling us that all of this stuff is NORMAL.
We are feeling very lost right now because most of my family doesn't believe that he has allergies, and figures that I should spank the tantrums out of him. I feel like all of the stuffis connected, but I can't find the link or the solution.
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#606 of 735 Old 11-15-2008, 02:48 PM
 
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Hi all. We are a little different in that I am the one dxd with asperger's and my kids are not diagnosed right now although they both have some traits. I just haven't gotten to the point of subjecting the older, who had delayed language and the famous toddler screaming marathons and now has some social issues, stimming, sensory defensiveness, plus occasional schedule disruption meltdowns. She has never been able to learn in school but is ahead of her age group academically (loves reading about entomology and American history, so her nonfiction reading experience and abilities are way above what her last school was willing to accomodate, plus she was bullied mercilessly and got very depressed there). My son is six and has been reading chapter books for a year but has some stimming. So far no social problems at all but is verbally precocious in a way that may be hard later, plus stimming, sensory issues, can't tell when he talking too loud, etc.
I am never sure when their issues are just age related behaviors but since they are learning so well at home and because I also was special needs gifted (initially misdiagnosed ADD with depression which was later misdxd PTSD OCD and depression and finally corrected to AS, PTSD largely from bullying and depression), there is no way I would put them in any school that I hadn't thoroughly investigated anyway. So I am still doing the whole internal debate about whether to pursue diagnosis or just keep teaching them at home, both about social norms and academic stuff. I am afraid that if one or both is officially dxd, they will not get what they need as gifted kids in terms of appropriate curriculum. I look forward to reading other parents' experiences and perspectives, especially as we consider whether to transition to going to school for middle and high school.
Glad to meet you.
layne

“ it was her habit to build laughter out of inadequate materials....She seemed to know that if she swayed the family shook, and if she ever deeply wavered or despaired the family would fall.”
 -Steinbeck, The Grapes of Wrath (I frequently ask myself, 'what would Ma Joad do?')

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#607 of 735 Old 11-23-2008, 02:59 PM
 
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Hi! I'm a first-time mom, and my newborn daughter Meadow was born with primary congenital glaucoma. She has very high pressure in her eyes because they never formed properly in utero. We aren't sure if she can see, but without treatment she will be blind. I am starting to research raising a visually impaired child, as it can affect her learning abilities. We have found a clinic in Miami that specializes in treating infant glaucoma, and have been there twice already for evaluations. Her case is unique, and the doctors concur that it is very severe. She will need many surgeries while she is young, and will need to be closely monitored all her life.
They have tentatively diagnosed her with something called Axenfeld-Reiger syndrome, along with something else called Peter's Anomaly. If anyone has experience with this, or can direct me to more resources for the blind, I would really appreciate it!

Thanks!

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#608 of 735 Old 12-02-2008, 03:19 PM
 
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Welcome new mamas to the SN board.

I would encourage all of you to open a new thread in this forum for questions. Sometimes people forget to check this thread because it's pinned to the top and doesn't move fluidly as other unpinned threads. If people don't respond it's not that they don't care it's more likely they didn't "see" this thread.

Normal is just a setting on your dryer.
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#609 of 735 Old 12-07-2008, 06:19 AM
 
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I'm kind of just lurking here because DD #2 has yet to be officially diagnosed (very frustrating!)...so I hope you all dont mind me posting anyway...I think it's just a matter of time.

DD #1 just has severe dry skin and Eczema neither of which I'd consider SN. But she is showing signs of being OCD...so I'm going to see what her pedi thinks we should do at her appt on Monday. She will be 4 in March.

DD #2 is showing major signs of being asthmatic, but I dont believe her pedi or our hospital will diagnose her until she is at least age 2 or unless she has another attack which they can catch...currently is has Albuterol and Saline to keep things at bay. She's 3 months old.
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#610 of 735 Old 12-08-2008, 05:38 PM
 
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I mostly lurk but sometimes post so I thought I'd introduce myself. My sn child is actually DH's son from a previous marriage that lives with us full time (his mom is schizophrenic so DH is the primary custodian). DSS is 16, severely autistic and severely mentally challenged. He has low muscle tone too. He is somewhere between 2 1/2 and 5 yrs old with his abilities. He is non verbal but will communicate his wants by pointing. He uses a communication board/device at school. He did not roll over until after a year old. He is almost constantly stimming one way or the other (primarily rocking his head but will snap his fingers near his mouth, pat his hands or touch himself you know where) unless you give him a task to focus on. He has a gentle and good natured disposition thank goodness. I know alot of you in this forum have much younger children but its still nice to lurk here from time to time. DH decided a few years ago that he would like to place DSS in a home with other kids like his son after he finishes school at age 21 so that's where we kind of are. We are getting DSS on the state waiting list and have toured one place that was awesome that we hope he'll go to.
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#611 of 735 Old 12-11-2008, 07:55 PM
 
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DD 4 has been diagnosed with pdd-nos,anxiety, and she has sensory issues.

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#612 of 735 Old 12-13-2008, 07:33 PM
 
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I'm new here, sort of. I was on Mothering quite a bit before and during my last pregnancy (with my 9 month old). And then, due to a crazy life I was off for quite a while but I'm back now with my little guy. He is 9 1/2 months old and has End Stage Renal Disease due to having only 1 dysplastic kidney. He's on peritoneal dialysis and he also has a G-tube because he gets very nauseated. He's a sweet little guy and a miracle in my eyes. Thanks for reading this mamas.

Jessica mommy to Cristian , Jaden , and Logan (Born 2/23/08 Kidney Transplant 9/4/09 )
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#613 of 735 Old 12-27-2008, 05:53 PM
 
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Hi there. I have 20m b/g twins. My DD was DX'd with hypotonic cerebral palsy due to a brain malformation. She is visually impaired due to bilateral myopia and exotropia, along with cortical impairment. She is non-mobile, is a silent aspirator, suffers from GERD and is G-tube fed. Her twin brother, is speech delayed and has SPD and is currently undergoing a work up for possible epilepsy. He also suffers from eczema and food allergies.
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#614 of 735 Old 12-27-2008, 07:22 PM
 
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DS has OCA2 (oculocutaneous albinisim type 2). That also includes vision problems, but we don't have a dx there yet. He has been showing signs of hypersensitivity to light.

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#615 of 735 Old 12-28-2008, 07:59 PM
 
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Hi! I'm new to Special Needs parenting, although not new to Mothering. Both my sons have psychiatric disorders. Apologies in advance for the novel that follows:

DS2, age 12, is Mood Disorder NOS on paper, although his treatment plan is for Bipolar. He went through a big episode of self-harm, suicidal gestures, hospitalization, etc. last February, largely in response to some other medication he was taking (ADHD meds), which exacerbated a previously undiagnosed mood disorder. Now he's on Abilify and Carbatrol, which is great for the mood stuff, but we've had to let the ADHD go unmedicated, since stimulants are what drove him over the edge last year, so now he's having all sorts of academic problems. At this point, I don't care if he learns anything or not, as long as he's stable. I had quite a time convincing his school to take me seriously on that, but they finally quit putting him in advanced classes against my will.

I'm more concerned about DS1, age 18, at this point. He's just recently "crashed and burned" during his 1st semester of college and had to move back home. He's always been a bit different, awkward, etc., but he changed SO MUCH during his 1st semester away from home, in very disturbing ways, that we had him evaluated by a psychologist. His diagnosis is a Severe Schizotypal Personality Disorder, with depression and self-destructive tendencies. My biggest immediate worry with him is the degree to which he's emotionally withdrawn from friends and family to whom he was previously very close - he's become very isolated and absorbed by his inner world. Long term, I'm concerned with functionality - completing some sort of education, finding a career path that he can manage with his personality disorder, etc.

Oh, and on the immediate horizon: we haven't told him the results of his psych eval. He has an appointment on 1/8 for the psych to go over the results with him. That's a worrisome prospect - I'm not sure how he'll react. His "affect" is very flat, so it's almost impossible to tell how he's feeling about something. Part of me thinks that getting this sort of diagnosis would be shattering for an 18 year old, but on the other hand, he knows he's not like everyone else - maybe it will be a relief to him to find out why. However, it will mean the death of his "dream" - the Air Force - which will be very painful.

I am hoping to connect with other moms who have older children with mood and/or personality disorders.

So...I'm 43 and pregnant with #3 - how'd that happen?  

 

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#616 of 735 Old 01-04-2009, 01:50 AM
 
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I have 1 yo identical twin boys, Seth and Malachi (and all their siblings of course!). They had RSV at 1 month and spent 4 weeks in PICU, 3 weeks of that on ventilators. Since then, Malachi's pulmonologist says that his lungs are so scarred that they are treating him as though he has emphysema. Round the clock breathing treatments for him...Sethie also gets breathing treatments, but not to the extent of his brother's!

Seth has been dxd with cerebral palsy, cortical visual impairment and microcephaly. A recent MRI shows that he has suffered a stroke...likely the cause of his problems. Seth receives physical, speech, and vision therapy every week thanks to Soonerstart. I have a blog for him if anyone's interested...or just bored. LOL! So far I guess you'd say that Seth is nonverbal and non mobile, but I think he's making some great progress. Malachi is very verbal and VERY mobile! LOL!

Both of them...ALL of them...are a huge blessing!

wife to my BFF since '96, happy but tired unschooling momma to DS (12), DD's (10,8,6 & 4) and Twin DS's (12-07)
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#617 of 735 Old 01-04-2009, 05:50 AM
 
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A warm welcome to all the newest members of our SN board. Feel free to ask for advice, to vent, to celebrate. You're going to find a lot of support, camarderie, and understanding here.

I hope 2009 is a year that brings a lot of happiness and progress and good health for our SN children.

Normal is just a setting on your dryer.
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#618 of 735 Old 01-04-2009, 07:41 PM
 
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Hi mamas!
Iam new to this thread , not new to mothering.
I just gave birth 3 weeks ago, to a ds, beautiful homebirth and ds has down syndrome. He has also been jaundiced and has taken a while to get the nursing latching on thing so I have been pumping non stop too. He is delicious and we are busy bonding right now. I hope to find other mamas who raise their sp kids naturally and I appreciate any info /input any of you mamas who have btdt have.
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#619 of 735 Old 01-06-2009, 05:26 AM
 
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Congratulations on your new baby! :

My daughter, who is on the autism spectrum, also had a bit of jaundice at birth. Morning sunlight is wonderful for making the jaundice go away.

Feel free to open a thread in the SN to introduce yourself to the mamas on this board. I know there are other mamas here with loved ones who have DS.

And welcome to the SN board.

Normal is just a setting on your dryer.
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#620 of 735 Old 01-09-2009, 03:54 PM
 
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I am new here, but i have a son 14 months old dignosed with cortical blindness due to strokes at or before birth. He has seizures as well due to the damage in his brain. We do physical therapy twice a week and visit the neurologist often.
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#621 of 735 Old 01-09-2009, 04:03 PM
 
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some websites that are helpful for blind babies(mine is 14 months) are seedlings.com and braillebug.com you can get free stuff and link to other websites. Also baby signlanguage will help when learning language sounds crazy but she'll be able to communicate with you.
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#622 of 735 Old 01-09-2009, 04:37 PM
 
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Welcome aboard, elanmom.

Thanks for the links.

Normal is just a setting on your dryer.
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#623 of 735 Old 01-11-2009, 04:11 AM
 
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Its nice to meet all of you. My 33 month old son was recently diagnosed with moderate autism. Its nice to have a place to talk.
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#624 of 735 Old 01-13-2009, 06:21 PM
 
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Late onset infantile spasms-epilepsy
Autism
Developmentally delayed
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#625 of 735 Old 01-16-2009, 01:09 PM
 
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Hi everyone. I wanted to introduce my situation right now. My DS, 6, is very ADHD. However, in being dx by a dr myself as being bipolar, I have been on guard for it in my son. His psych said there are a couple of things that lead her to see it in him, however, she is reluctant to dx him with bipolar yet. So she put him on ADHD medicine, Concerta. Which is enhancing the irritation levels. I don't have the self harm, thank goodness. Right now we are just starting to deal with the mood levels. My problem is when looking at what he does on an individual basis, it seems like normal boy/brother behavior. Which is what delayed him getting seen by a dr in the first place. But I know that it isn't normal for him. I orginally thought he had a sensory issue. Which would explain parts of the bipolar. I am currently reading a bood for childhood bipolar and a book for my own bipolar. I want to help him get through his childhood and learn how to handle it.

Married to a Navy man of 12 yrs.

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#626 of 735 Old 01-18-2009, 12:55 AM
 
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Welcome aboard and thanks for the introductions.

Normal is just a setting on your dryer.
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#627 of 735 Old 01-18-2009, 01:01 AM
 
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Quote:
Originally Posted by elanmom View Post
I am new here, but i have a son 14 months old dignosed with cortical blindness due to strokes at or before birth. He has seizures as well due to the damage in his brain. We do physical therapy twice a week and visit the neurologist often.
My DD has cortical vision impairment due to brain damage. It's hard because we know she can see *some*, but it's anybody's guess as to how well, or what she can see. At 15 months, she still can't track a toy, but she will turn to look at the TV. Who knows? She also has a seizure disorder.

Welcome!
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#628 of 735 Old 01-18-2009, 09:24 PM
 
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Hi everyone

I'm fairly new to this section of MDC. My 20 month old son was diagnosed 2 weeks ago with type 1 diabetes. His sugars are still all over the place, but so far, he doesn't mind the finger sticks or the shots. I'm hoping there are some other parents around here who've been through this and can help me out!

Jen
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#629 of 735 Old 01-19-2009, 12:35 AM
 
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I have posted in the forum about DD, but haven't posted here. She is 21 months old and has Diplegic Cerebral Palsy.
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#630 of 735 Old 01-28-2009, 12:12 AM
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Brandon has ADHD and Alec has SPD, ADHD, and an expressive language disorder.
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