| Author | |
Taffy
Forum All-Star
Joined: April 05 2005
Location: Canada
Online Status: Offline
Posts: 1567
|
| Posted: Aug 12 2007 at 4:15pm | IP Logged
|
 |
|
Hi Lori, glad to "meet" you! 
__________________
Susan
Mom to 5 on earth and 1 in heaven
Susan's Soliloquy
|
| Back to Top |
|
| |
SusanJ
Forum All-Star
Joined: May 25 2007
Location: New Jersey
Online Status: Offline
Posts: 1347
|
| Posted: Sept 21 2007 at 12:56pm | IP Logged
|
|
|
I've been meaning to introduce myself forever and I keep thinking that I'm going to write up Joseph's story on my blog and then link to it by way of introduction, but, somehow, I've never gotten to that. But I keep wanting to post questions and I feel like I should introduce myself before I dive in with questions!
I'm mom to Joseph (almost three) and Margaret (one next week). Joseph has spina bifida. He was diagnosed at 20 weeks via ultrasound and we are so glad for the prenatal diagnosis because it gave us needed time to grieve. By the time he was born we were mostly over the sadness and were so glad to have our adorable little boy that most of his doctors thought we were in denial. Spina Bifida is a very variable condition that can affect both mobility and cognition. Cognitive issues are usually the result of hydrocephalous which accompanies spina bifida about 90% of the time. Joseph has hydrocephalous and is parapalegic. He had surgery when he was 48 hours old to close his open spine and place a shunt in his brain to drain fluid. He had to have further surgery six months later to repair the shunt but has been healthy ever since.
Joseph has no obvious cognitive issues--he actually seems like he might be extremely intelligent (always hard to tell when it's your own kid!). Honestly, I wonder if this is miraculous. We prayed a novena for healing around the time of his second shunt surgery and at first thought nothing had happened. In retrospect, looking at pictures, and comparing him to dd, I think he had major delays that disappeared after that novena. Who knows how God might have answered that prayer.
Joseph's main issue is mobility. His level of paralysis is T12 (for any of you who might know about such things) which is fairly high. He has a pile of orthopedic equipment including a wheelchair which he got this summer. He's a whiz in that thing and it's hard to keep up with him when we're out and about. He's also learning to "walk" with long leg braces and a walker but this skill will be mostly therapeutic and, maybe, around the house. He won't be able to go distances that way or anything.
So . . . that's us. I'm actually struggling a lot today which is why I'm finally posting an intro. I'll start a new topic with my main question.
__________________
Mom to Joseph-8, Margaret-6, William-4, Gregory-2, and new little one due 11/1
Life Together
[URL=http://thejohnstonkids.blogspot.com]The Kids' Blog[/UR
|
| Back to Top |
|
| |
Karnak
Forum Newbie
Joined: Sept 12 2007
Online Status: Offline
Posts: 33
|
| Posted: Sept 29 2007 at 10:55am | IP Logged
|
|
|
HI ladies
MY name is Karnak. I have 3 kids, two of whom are autistic. th eldest a girl of now 18 non verbal and low functioning, a very normal bright 13 year old girla nd a little boy of 7 with high functioning autism and the associated concerns and worries. so yes as one earlier lady said some autism must be genetic. So for my son, I hope, pray and really push him very hard to move along. Like the rest of you I sometimes feel despondent but then think I must get on with it. I am Australian and Australia has hopeless services in many places as it seems the US does as well for special needs kids
Karnak
|
| Back to Top |
|
| |
Willa
Forum All-Star
Joined: Jan 28 2005
Location: California
Online Status: Offline
Posts: 3881
|
| Posted: Sept 29 2007 at 11:02am | IP Logged
|
|
|
Welcome, Susan and Karnak!
My Aidan used to have a shunt.
Karnak, I think the special needs services vary here in the US. I have heard horror stories. Up where we are, services are a bit lethargic. It's hard to get a sense of the big picture, which is hard for me. The various therapies don't tend to synch together, and since we live off the beaten track, getting our child together with his therapists is sometimes a big job. Our occupational therapist, that comes to our house, is extremely good at integrating, and I feel grateful for that.
__________________
AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
Take Up and Read
|
| Back to Top |
|
| |
Bella
Forum All-Star
Joined: Nov 18 2006
Online Status: Offline
Posts: 571
|
| Posted: Feb 13 2008 at 5:37pm | IP Logged
|
|
|
Hi Ladies,
I've decided to introduce myself here. Kinda coming out of denial-I write it, therefore I accept it and move on.
A little voice is telling me not to minimize our situation here...as this is soemthing I've always done-and it leads me to nowhere city! So here goes...
Our DD is 11 yo now. When she was 4 yo, she was dxed with R.A.D., and Sensory Integration Disorder-Auditorily and tactilly. Her OT helped somewhat, but there are still times when she is suffering badly. When she was 10, she was dxed with Generalized Anxiety Disorder and Panic Disorder, along with Asthma(what a summer!). She has seasonal allergies, and is food intolerant to various foods. When she was first dxed with GAD, we put her into CBT. She hated it, would get so upset, that I would have to spend hours getting her to agree to go. I eventually switched therapists because she so much hated tha one she was seeing. Well, she hates this one too. I've decided that for now, the fight isn't worth it. She is convinced that she is the only 11 yo girl in the world that has this(typical!), and we have seen how much this has effected her self-image. I feel so scared right now. At nights, she will scream and cry that she is afraid she will die in her sleep(common), or that her heart will stop...or she will stop breathing. It is heart wrenching to see how much she suffers emotionally. She hasn't had a Panic attack for over a month, Thank God. I am praying htat we have made the right decision by taking a break from the therapy. IN the meantime, she is very hard to deal with, and the slightest thing can set her anxiety off. She has inherited my DH's perfectionistic personality, and has entered puberty. This has effected her self esteem so much it makes me cry. Add to this, I have a handful of Invisible Chronic Illnesses, and Anxiety and Panic are symptoms of a few....so I absolutely understand how scared she must feel. Don't even get me started on Mommy guilt. I can't really share this with any of my friends, as she would be horrified for anyone to know.  Needless to say, HSing her is challenging, and the past experience and future thought of sending her to school is frightening at least.
Oh, I was motivated to post here, as I have posted in other forums about parenting, and was up for a long time lst night realizing that this isn't a typical DC I am parenting.
Sorry for rambling and being so horribly inarticulate.
This feels good to share and get off my chest in a safe place.
God Bless,
Christy(Mom to DD 11yo, and DS 6 yo) married to DH 17.6 yrs!!   
|
| Back to Top |
|
| |
Bella
Forum All-Star
Joined: Nov 18 2006
Online Status: Offline
Posts: 571
|
| Posted: Feb 13 2008 at 6:42pm | IP Logged
|
|
|
Ladies,I just wanted to add that I am praying for all of you and your families. Like another poster said, I have laughed and cried throughout reading this thread. My heart goes out to all of you and your families. You are inspiring and amazing.
Christy 
|
| Back to Top |
|
| |
4 lads mom
Forum All-Star
Joined: Sept 26 2006
Online Status: Offline
Posts: 1944
|
| Posted: Feb 14 2008 at 5:12am | IP Logged
|
|
|
Welcome Fellow Sisters!!
I am at my ds's bedside, in the hospital, trying to type very quietly on an old sticky keyboard  so, I have to be brief. Thanks so much for posting, and introducing yourselves, I can relate to so much of what you all are saying. Continue to make this little part of 4 Real forums your haven....you don't have to say much and you will have dozens of us understanding you...what validation!!!
God Bless you all!!
__________________
Mom of four brave lads and one sweet lassie
Scenes From This and That
|
| Back to Top |
|
| |
Willa
Forum All-Star
Joined: Jan 28 2005
Location: California
Online Status: Offline
Posts: 3881
|
| Posted: Feb 14 2008 at 9:11am | IP Logged
|
|
|
So glad you joined us, Christy. I think you are right -- it really helps others to be able to read about the range of special needs out there and realize that we aren't the only ones.
That is difficult with the pre-puberty hormones plus the ongoing conditions. I am thinking maybe we ought to open a thread on the forum about how Moms can deal with the "mommy-guilt". I know it's a big thing especially when your child does not fit a typical pattern (and I suppose what child does, indeed?)
__________________
AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
Take Up and Read
|
| Back to Top |
|
| |
SimplyMom
Forum Pro
Joined: Jan 11 2008
Online Status: Offline
Posts: 118
|
| Posted: Feb 14 2008 at 11:36am | IP Logged
|
|
|
Hello,
I am the mother to 6 wonderful children: DD15, DD14, DS9, DD6, DS4, DD2(tomorrow). My second child Rachel is severely autistic and in a residential setting due to her violent and aggressive behaviors. Sadly she only "goes off" once in a while when things don't go as she feels they should. But when she does go into a rage it is destructive and dangerous. She can be physically aggressive to other children in the house and... well. We reached the point where we just couldn't manage it. I have blogged recently about our situation with Rachel here and
here.
My DS9 is showing some ADHD types of behaviors that we are struggling with from time to time. Thankfully everyone else is happy and healthy thus far.
|
| Back to Top |
|
| |
mom3aut1not
Forum All-Star
Joined: May 21 2005
Online Status: Offline
Posts: 757
|
| Posted: Feb 14 2008 at 8:34pm | IP Logged
|
|
|
SimplyMom,
Hi! I read your web pages. I have a low-functioning, severely autistic brother (he just had a birthday!) and three kids on the spectrum. Having my brother actually helped me to have perspective on my kids' disability -- although I think that today's therapies could have helped him, I know there's no cure. I feel sad when I see desperate parents (spending almost $30,000 on dolphin therapy?) who are convinced that just this thing or that thing would cure a child. I also know that there is a time for institutional placements. When I was in high school, my parents realized that they could not meet my brother's needs -- and it would be worse when I left for college. (My brother is my only sibling.) My parents visited my brother almost every week until a few months before my dad's death. My mom sees him once a month when she's healthy; she just went to his ISP meeting. (I live far away so I can't really go.) She has to pay $80 or more each time she visits him because she can't drive. Although my mom has her faults and opposes both the Catholic Church and homeschooling, there is no doubt that she has been a dedicated mom to my brother, and I am sure that God notes that.
As for my kids, my oldest ASD child (22) is doing well enough that I can see her being completely independent with some instruction and a step-by-step approach to living on her own. The second ASD child (20) is about to graduate from high school (it has taken some extra time), but I am concerned about her ability to live on her own without some help. I know she can't drive. I have to look into having her My youngest ASD child (8) is making great progress, but I am already considering what we may need to do when he is older. I am not giving up on him, but I can already see that he may not be able to live independently as an adult. (My non-ASD dd (25) has her own issues.) Whatever God wills. After hearing some of the dirt from my dh's family, I have decided that there are worse things than having a severely disabled child or sibling. My brother is innocent, and if I can get him baptized (I will be his guardian some day), he will go straight to Heaven unlike many.
I hope you know that you have been and are a good mother. Cyber hugs from someone for whom autism is a way of life..... I know that some ignorant people criticized my parents for putting my brother in an institution, but they were right to do it. You did the right thing for your dd and the rest of you. You may not need me to say that, but I thought I'd try to give you my support even if it is ineptly expressed.
In Christ,
Deborah
|
| Back to Top |
|
| |
Bella
Forum All-Star
Joined: Nov 18 2006
Online Status: Offline
Posts: 571
|
| Posted: Feb 16 2008 at 7:35pm | IP Logged
|
|
|
Thanks Willa. Yes, Mommy Guilt could be a whole forum itself. Meds before/during pregnancy,meds during breastfeeding, vaxes, wrong food during pregnancy/nursing. Do we not stick with an elimination diet long enough? And then HSing! Are we providing enough enrichment,discipline,structure-or too much?? I often think of parents with Autistic DC-the frequent reports of the causes and cures. It could drive each of us crazy if we let it. But that is satan. he wants us to feel guilty.That way, our energy is directed towards pity, negativity,anger, and self-doubt....when the energy could be directed towards loving our DC as they are.Just my humble.02.
Warmly,
Christy
|
| Back to Top |
|
| |
mandmsmom2001
Forum Newbie
Joined: Jan 15 2008
Online Status: Offline
Posts: 45
|
| Posted: Feb 19 2008 at 4:04pm | IP Logged
|
|
|
Finally jumping in here: I am Mom to 2 boys, ages 10 and soon to be 7. Both have mild "uniquenesses." I'd describe both as spirited and in opposite ways. Where one is an introvert, the other an extrovert and the opposites only begin there. They are blessed with good health, no major allergies, etc. Their issues are almost entirely behavioral with a few exceptions.
10 yo has a growing list of specialists in his back pocket. Behaviorist (severe toileting issues at 4, mild OCD, GAD), occupational therapist - SID - primarily psycho-social and oral which means food issues. Has had speech therapy on and off since age 2.5, severe ear infections being only part of the problem. He is twice challenged - he's academically gifted too. So add psycho-educational specialist to his list. (Yes, it IS a blessing but there are days...!)
6 yo has food additive issues - can not have colors, persavatives, flavorings. We loosely follow the Feingold diet. He also has Tylenol issues that no medical person can or seems to care to try to explain why but he has night terrors and severe abdominal cramping when he has had it. Neither is life threatening but consumption of these makes liefe very unpleasant here.
He is very delayed in his speech but no ear infections like his biig brother. He is also showing delays in reading (still has a difficult time with letter recognition out of order). We are still trying to find out if this is developemntal or visual as he too has a few specialists in his bag of tricks. Pediatirc opthamologist - he had a lazy eye from birth to 2 and may need to be retested for vision issues. He may be near sighted. Last test was inconclusive as he was too young to respond. Was difficult to test at regular annual physical because they insited on giving him the test with the letters rather than the shapes - see above reading delay!
As for Mommy guilt, plenty to be had here!
|
| Back to Top |
|
| |
SimplyMom
Forum Pro
Joined: Jan 11 2008
Online Status: Offline
Posts: 118
|
| Posted: Feb 20 2008 at 2:55am | IP Logged
|
|
|
Thanks ladies
I really appreciate hearing from other parents who have expeienced autism, especially sever autism in their families. We are very blessed to have a family in our parish with an autistic adult son. They have been such a support and inspiration to us.
Deborah, we have often thought the same thing with our Rachel. She recieves Communion and it is the most wonderful thing, despite having real "issues" with food she has never acted up durring Mass, she is always so reverant and so good. Mass speaks to her in the soul's native tongue and she responds to it in a way that can only be described as a blessed event. I have no doubt that heven awaits her someday.
|
| Back to Top |
|
| |
emmsie
Forum Newbie
Joined: Dec 17 2007
Online Status: Offline
Posts: 20
|
| Posted: Feb 28 2008 at 3:53pm | IP Logged
|
|
|
My dd is 9 and has di george syndrome, I lost my first baby from hypoplastic left heart syndrome and they didn't know what caused it at the time. I then had two normal children, then jessica. she couldn't feed and ended up with a nose tube for feeding as she was refluxing into her lungs and nearly died from pnumonia. This went on for 10 months till i saw a good geneticist.
she has had 3 surgeries. I have to do , speech and language, physio and vision training with her every day, she is really excited about getting her first glasses next week.
I took her out of a catholic school, as they really didn't look after her properly and she was being bullied. Her sisters were fine there.
I'm sure they kept her developement back on purpose as she is far more intelligent than they made out and has come on in leaps and bounds since using math u see and starfall.
|
| Back to Top |
|
| |
Roomfor3more
Forum Newbie
Joined: Feb 02 2008
Online Status: Offline
Posts: 5
|
| Posted: Feb 29 2008 at 9:00am | IP Logged
|
|
|
 WOW!
I'm amazed as I read these posts; I never realized how many moms have multiple children who are extra-special blessings that God gives to us. My problems seem so small in comparison, but I can tell you that I almost feel like I should go to Confession seven times a day EVERY DAY, as we've had difficulties with our first-born dd-- even before she was born!!!!
She was very anxious even inside my body when I was expecting her. If I drank ice cold water, which I did very often, the moment the cold water "touched" her she would flinch and poke and almost "jump" inside me. Back then, I thought it was funny. Then, whenever I took very warm baths, she would roll around a lot as if to get away from the change in temperature or become startled at the point when my belly would be submerged. My, how I marveled at watching her various 'moves' inside my body.
As I look back it seems she was uncomfortable "being" in my womb. At birth she came out with an obvious arch to her back, and when I first began nursing her in the hospital, she was so difficult that the lactation nurse said something peculiar, but I can't quote her: 'oh, you've got a spunky one here'.
After we arrived home we experienced the constant startle reflex in her whenever someone spoke a little loudly or sneezed or coughed. She was sooooo nervous and everything 'bothered' her. Being held close was too much for her. She ALWAYS faced outward whenever she was held. (no head to chest contact). I was afraid every 2-1/2 hours whenever I had to nurse her b/c she pinched her lips soooooo hard and simply had a terrible time latching and re-latching and just being calm and close to me.
Being my first child I thought, gosh, are all babies this noncontent? She was the perfect Choleric child (now that I understand more about personalities and names given to specific types of personalities). Her baby brother came 14 months after her. Now I had two babies. Her brother was calm and cuddly and enjoyed nursing for a VERY long time.
Forward six years: she continues to be unhappy, not satisfied, and HAS to be in CONTROL AT ALL TIMES.
I must hold my six-pound poodle in my lap or keep him in the crate b/c she is painfully rough and aggresive with him (And I KNOW SHE ISN'T DOING 'IT' ON PURPOSE). She is and was naturally born very physically and emotionally uptight.
She's impacted the whole family-- especially her brother who is always "scared" of "EVERYTHING". She manages to scare him, and of course this all began for him the moment he came into the world. She would hurt (and continues to hurt) her little brother. I MUST be constantly vigilant with them.
Her muscles are very tight and do not soften up, even with constant training on being delicate, gentle, loving, etc... (I started training her in her first months of birth and continue to do so today!). She cannot be alone with either her brother or our toy poodles.
I often wondered why we haven't been given the gift of a third baby for almost five years now. But I DO realize that I would be pulling my hair out all the more knowing that she is not capable of being alone with a baby, a pet, anything alive!
I must go now, but anyone who has had this experience will understand that although I only have two children, the two that I have multiply my time and energy by two-and-a-half times or more. Does anyone know what I'm talking about?
Sorry for rambling but I've got to go get some work done in the house soon.
Please KNOW that I WHOLEHEARTEDLY love my daughter and my son and that her "dis-ease" is not hampering my love for her. Her heart is right; her spirit is right in the Lord! Mostly, though, I want to die a little every day. I believe that's the Cross, right? My Cross!
|
| Back to Top |
|
| |
Lauri B
Forum Pro
Joined: March 11 2008
Location: Pennsylvania
Online Status: Offline
Posts: 208
|
| Posted: March 12 2008 at 1:17pm | IP Logged
|
|
|
My youngest daughter, Gracie (nearly 10), was diagnosed about 3 years ago with Asperger's/ADHD/SID. We had in-home therapy for two years, then she reached a fairly stable point and we phased-out of therapy for the time being. We have a lot of ups and downs and I struggle every day (painful admission) with not liking her very much. Anyway - that's our story! :) Any other Aspie girls?
|
| Back to Top |
|
| |
Lori B
Forum Pro
Joined: March 24 2006
Location: Canada
Online Status: Offline
Posts: 209
|
| Posted: March 13 2008 at 9:58am | IP Logged
|
|
|
Yes, we have an Aspie girl, who just happens to be named Gracie .
__________________
22yod, 16yod (Asperger's), 14yos (dyslexia, APD, ADHD), and 11yod (JXG, glaucoma, legally blind)
|
| Back to Top |
|
| |
julia s.
Forum Pro
Joined: Feb 27 2005
Location: Maryland
Online Status: Offline
Posts: 394
|
| Posted: March 14 2008 at 4:53pm | IP Logged
|
|
|
Lauri,
I just wanted to say welcome and I'm sorry for your struggles. I have a boy with sensory integration problems and some asperger traits.
I found this article the other day and I thought of you. I don't know if it will help, but it sort of put things in perspective for me. The only caveat of the article is that it comes from a Waldorf source so keep that in mind when reading it, but I thought the information interesting.
I'll pray for your struggles.
__________________
julia
married to love of her life
with ds12 ds8 ds3 and ds1
|
| Back to Top |
|
| |
Karnak
Forum Newbie
Joined: Sept 12 2007
Online Status: Offline
Posts: 33
|
| Posted: March 24 2008 at 6:56am | IP Logged
|
|
|
We have a lot of ups and downs and I struggle every day (painful admission) with not liking her very much.
I think most of us have been there and still go there. Special needs kids are hard work compared with normal kids and I think autistic kids are the hardest to take at times. The meltdowns, agressive behaviour etc, yadda yadda yadda can get you down. I also tend to think that many mothers of special needs kids mourn for what might have been and is not due to their kids disability. I often suffer a low grade depression and this i can honestly attribute to dealing with my son and his autism.
However i can really dislike my normal 13 year old at time and yes I often dislike my husband. But then dislike is mutual at times
|
| Back to Top |
|
| |
melanie
Forum All-Star
Joined: June 28 2007
Online Status: Offline
Posts: 563
|
| Posted: March 24 2008 at 8:04am | IP Logged
|
|
|
Hello, I've never posted in this particular forum before, because as someone else said, our "special-ness" is fairly small scale compared to some of your lovely kiddos. But I read once in a while, just out of nosiness...I was a pediatric nurse in a former life and loved my job, so I couldn't resist reading about your great kids sometimes.
We have three kids and one due in 8 weeks. My 11yo is in vision therapy and is diagnosed with an "expressive language disorder" which basically means she has a lot of problems with reading, writing, and especially spelling. Her symptoms are similar to many dyslexia symptoms although she reads above grade level...but reading is very difficult for her because of vision difficulties. She is currently in vision therapy and will be finishing up in June. Her writing is improving, although she still has letter reversals and transposes letters sometimes. Her spelling is horrible...really.
Then we have my 8yo nephew. He has lived with us for what will be 2 years in August. He has severe ADHD and sensory integration disorder, some motor and speech delays as well, but he actually does really well academically...if you can get him to sit in a chair with you long enough. He also was born 2 months prematurely due to his mother's drug use and has a history of abuse and neglect. It's been a long road with him...we weren't able to do a whole lot for him until we got legal guardianship and he also had to be in public school last year. This year he is homeschooling and has been in behavioral therapy, and they are looking at a possible diagnosis of bipolar disorder, which runs in my family. It's so difficult, though, to sort out what has been a result of his first 6 years of life and what is more related to his various diagnoses, but I'm glad to say we have made tremendous progress. He is also finally starting speech and occupational therapy. When he was in school, they wouldn't treat those problems because they were not "severe enough",,,apparently not being able to hold a pencil or speak so people can understand you is not severe enough to interfere with your education. We have had him privately evaluated though and he is starting those therapies very soon.
Then there's my 3yo...he has no diagnoses. He's just a sweet, funny little guy who actually seems to be quite gifted. He has just kind of "picked up" so much around here that he knows all of his upper and lowercase letters, knows all the sounds they make and words that start with each sound, can sign all of his letters, can count to 30 and recognize all of those written numbers,,,and just seems to have a fascination for these things. I'm excited to think that maybe I'll be homeschooling a child that *enjoys* reading someday (gasp!). Anyway, if you've read through all of this, thank you, and I'm still reading through all of your introductions!
__________________
Melanie
homeschooling Maria (13yo), Kain (10yo), Jack (5yo), Tess (2yo), and our newest blessing, Henry Robert, born 4/23!
slightlycrunchycatholic.blogspot.com
|
| Back to Top |
|
| |
|
|
4Real Forums : Special Blessings
Topic: Can we introduce ourselves?
