Unschooling, writer mom of Matt, 22; Lydia, 21; Alex, 18; Liam, 16; Jack, 9; Kiara, 7; Seamus, 5; Anais, 1 and ??? May 2015. About to hit the road in an RV full time. Currently live off grid in Alaska.
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.
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!
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.
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.
“ 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?')
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!
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.
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.
If it looks like I'm trying to pick a fight... I'm not, I'm rarely that obvious.
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?
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!
I hope 2009 is a year that brings a lot of happiness and progress and good health for our SN children.
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.
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.
Married to a Navy man of 12 yrs.
03/02: 11/05: 01/08: 10-18-09: 10-31-10 and 7/22/13 with twins and just found out we're again!!
m/c '97 and in '03
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.
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!