RE: Parents with Children of special/high needs children support thread
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RE: Parents with Children of special/high needs childre... - 10/7/2008 8:51:32 AM
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iampiper13
Posts: 71
Joined: 5/31/2008
From: Maryland
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We're still fighting the cold, we went yesterday to our family doc, who thank God listens to us, Callie is now on an anti-biotic. We haven't started her Prednisolone yet but we have it ready. Shes a real trooper, I don't know if I could do all that she puts up with. We're doing everything we can to keep her out of the hospital although at times we do kinda miss being there which may sound strange but its kinda like being at a second home. lol
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God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 10/7/2008 2:32:44 PM
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ladyingrace1979
Posts: 413
Joined: 3/14/2008
From: Fresno CA
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Dear Father,
We thank you that Callie's doctor listened and gave good care to Callie. We thank you for her strength and courage and how much she teaches us.
Please continue to bless them and strengthen Callie's respiratory system.
In Jesus name,
Amen.
I'll be praying for you,
In His grace,
Kim Q
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RE: Parents with Children of special/high needs childre... - 10/8/2008 4:58:01 PM
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ladyingrace1979
Posts: 413
Joined: 3/14/2008
From: Fresno CA
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Hi all,
First thing I wanted to say is that I'm so glad I found this thread. I love being able to post and you all understand.
Second, I had posted about going to a psychologist for one of my twins, Alyssa. She has been having problems in school and just not participating verbally. This actually had started last year but had been getting better. Then we changed teachers and it came back badly. The psychologist appointment today was just me, DH and the psychologist. I really like her. Her grandson has autism so she understands the parents perspective. She also gets the professionals perspective too so it is a really balanced approach. She believes that Alyssa's problem is related to anxiety and fear of not doing well. I can see this. Since the girls don't have strong language skills it's hard for Alyssa to tell us what is wrong. The teacher sees this as Alyssa being defiant. So we are going to have to deal with that issue. I really don't like this teacher so I'm going to have DH talk to her. So Alyssa will start seeing her once a week to start and then once every two weeks once a good relationship has been established.
I'm feeling a little overwhelmed right now. I just thought we got out of the therapy world (Ot, Pt, St) outside of school. But I know it is necessary and we'll adjust to a new normal. It doesn't help that DH is having problems with his MS. I'm just a bit tired of all the "stuff" we deal with. Anyway, life goes on.
Thanks for listening,
Kim Q
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RE: Parents with Children of special/high needs childre... - 10/8/2008 6:29:10 PM
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myka
Posts: 814
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(((((Kim)))))
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RE: Parents with Children of special/high needs childre... - 10/10/2008 5:21:52 PM
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nicole6598
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Kim that's hard because its not actually her fault, that's more something the teacher needs to address. I had alot of young children come to me from different schools who had just been shattered by their previous teachers. Their confidence to try something was so low. It can happen with parents who are too pushy and critical too. Are you going to address this with her teacher?
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Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 10/10/2008 7:15:01 PM
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ladyingrace1979
Posts: 413
Joined: 3/14/2008
From: Fresno CA
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quote:
ORIGINAL: nicole6598
Kim that's hard because its not actually her fault, that's more something the teacher needs to address. I had alot of young children come to me from different schools who had just been shattered by their previous teachers. Their confidence to try something was so low. It can happen with parents who are too pushy and critical too. Are you going to address this with her teacher?
Oh yes, actually my dh will. I'm not very happy with this teacher and I tend not to be as diplomatic as I should. I will be the one at the IEP so I am sure it will come up then as well.
Kim Q
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RE: Parents with Children of special/high needs childre... - 10/11/2008 12:32:23 PM
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bennettsh
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Hi, My name is Sharon and I have two wonderful children ages 12 & 14 that my husband and I adopted as infants through open adoptions from two separate birth families. Although we don't stay in contact much with the birth families anymore, the birth family genetics sure seem to play and active part in our lives. We have survived many battles and issues that have come along. Presently, we are coming to realize that the challenging behavior of our 12 year old son may have been mis-diagnosed all these years as Fetal Alcohol Syndrome, Anxiety Disorder, and ADHD. We are now researching info on Asperger's Syndrome and are seeing a very distinct link between our son and the discriptions in the information we have read. It is all making much more sense now.
I hope someone would have some words of encouragement for us. Matt is struggling horribly in a new school this year. We are getting lots of support from his teachers and support staff. The school's SET Team is going to start observations and testing.
Please pray that the main focus will be to help our son succeed socially and learn how to overcome his anxieties. He is an awsome kid and we love him so very much.
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RE: Parents with Children of special/high needs childre... - 10/11/2008 2:47:20 PM
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flyboy2610
Posts: 142
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I will be praying for you. It can be very wearing to have a special needs child.
_____________________________
If the women don't find you handsome, they should at least find you handy.
Red Green
If you're going to live like there's no hell..... you'd better be right.
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RE: Parents with Children of special/high needs childre... - 10/17/2008 9:10:15 PM
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iampiper13
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From: Maryland
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Update on Callie, it seems that we got on this cold in time and it stayed in her sinuses, she returned to school on Monday and is doing great! Thank you all for your Prayers.
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 10/28/2008 10:20:29 PM
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Fledgling
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quote:
Hi, My name is Sharon and I have two wonderful children ages 12 & 14 that my husband and I adopted as infants through open adoptions from two separate birth families. Although we don't stay in contact much with the birth families anymore, the birth family genetics sure seem to play and active part in our lives. We have survived many battles and issues that have come along. Presently, we are coming to realize that the challenging behavior of our 12 year old son may have been mis-diagnosed all these years as Fetal Alcohol Syndrome, Anxiety Disorder, and ADHD. We are now researching info on Asperger's Syndrome and are seeing a very distinct link between our son and the discriptions in the information we have read. It is all making much more sense now.
Hi Sharon,
I have a child with Asperger's syndrome. He is very intelligent that's the really great part.. the scary part is that he is very socially naive. A child with Asperger's syndrome has great potential.. I have heard silicon valley has many more than most places because they can be so focused and intelligent that they make great computer scientists. The hard part in raising them is helping them find their niche in society. Special needs children can really be a blessing, albeit a challenge.. but don't those two things so often go together. I am a single mom with two special needs children. One with Asperger's syndrome and one with Pachygyria, a rare form of microcephally. My Asperger's child is now 18 and this has been the most challenging time yet.
My child was mis-diagnosed for several years before they determined it was Asperger's syndrome...
God Bless you and your family.. If you want to chat with me more about the subject feel free to contact me :-)
Oh something that is helpful to me that others might find helpful..
I have been in contact with the DMRS. They provide special job training and other services such as housing for special needs adults... they can also provide financial aid for special needs families.. My son is only 11 but I contacted them last week because I was informed that the waiting list to receive services has a 6,000+ person waiting list in TN and longer in other states.. so you need to get on it when your children are very young.
< Message edited by Fledgling -- 10/29/2008 7:52:59 AM >
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RE: Parents with Children of special/high needs childre... - 10/28/2008 10:48:21 PM
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Auben
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Hello everyone. Thinking of you.
Luke tried 2 new foods (chicken and scrambled eggs) this week so it's been a good week.
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Tamara
~Everywhere is walking distance if you have the time~
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RE: Parents with Children of special/high needs childre... - 10/29/2008 7:55:01 AM
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Fledgling
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Thats great :-) I am happy for you.
God Bless You, Luke and Your Family :-)
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RE: Parents with Children of special/high needs childre... - 12/3/2008 8:22:28 PM
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flyboy2610
Posts: 142
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I love my daughter. I really do.
But right now I don't like her too well.
She will be 12 in February, so the early stages of adolescence are kicking in. She has Asperberger's syndrome, so that's always a factor.
She is rude, disrespectful, feels like nobody loves her and her opinions don't matter. Today at school (6thgrade) she refused to go to classes after lunch because there was a half inch of snow on the ground and she wanted to build a snowman. She didn't want to wait until after school because then all the snow would be gone. She kicked the walls, sat on the floor, threatened to hit the teachers, and was just a brat!
Yesterday and Monday she wouldn't get dressed for school, and almost missed the bus. This has been going on for several weeks, and it is very wearing.
I want my sweet, lovable girl back!
_____________________________
If the women don't find you handsome, they should at least find you handy.
Red Green
If you're going to live like there's no hell..... you'd better be right.
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RE: Parents with Children of special/high needs childre... - 12/14/2008 2:43:50 PM
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m4maggie
Posts: 54
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Um... I am a mom of twins... I can honestly say that they are a handful, but I've been very blessed in that they are healthy and doing well.
I wanted to add to this thread because
1. I am a parent
2. Although I've been very blessed with two healthy children, my parents were able to raise me and two older, both severely Autistic brothers *keep in mind, this was the seventies too and at the time, my parents were told to toss the boys and forget about them.. Oh.. and autism was solely moms fault* I'd be glad to add insight to any parent who may have a concern about a sibling of a special needs child. You'd be very surprised about what siblings have to say sometimes....
3. I really want to start my own practice. I have my BA in Psychology and I specialized in grief counseling. I want to help and counsel parents and families who have special needs members and just help walk them through the challenges they'll face in as many aspects as I can. I've noticed *from experience* that there are so many programs available for the child, but very little for parents and siblings, that is... aside from the registered agencies or associations. I just believe that it's not the diagnoses itself that's the hard part, it's grieving the could'ves and shoud've beens. Parents??? am I close? would it be a useful resource?
Always around to lend an ear : )
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RE: Parents with Children of special/high needs childre... - 12/14/2008 8:35:19 PM
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ladyingrace1979
Posts: 413
Joined: 3/14/2008
From: Fresno CA
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quote:
ORIGINAL: m4maggie
Um... I am a mom of twins... I can honestly say that they are a handful, but I've been very blessed in that they are healthy and doing well.
I wanted to add to this thread because
1. I am a parent
2. Although I've been very blessed with two healthy children, my parents were able to raise me and two older, both severely Autistic brothers *keep in mind, this was the seventies too and at the time, my parents were told to toss the boys and forget about them.. Oh.. and autism was solely moms fault* I'd be glad to add insight to any parent who may have a concern about a sibling of a special needs child. You'd be very surprised about what siblings have to say sometimes....
3. I really want to start my own practice. I have my BA in Psychology and I specialized in grief counseling. I want to help and counsel parents and families who have special needs members and just help walk them through the challenges they'll face in as many aspects as I can. I've noticed *from experience* that there are so many programs available for the child, but very little for parents and siblings, that is... aside from the registered agencies or associations. I just believe that it's not the diagnoses itself that's the hard part, it's grieving the could'ves and shoud've beens. Parents??? am I close? would it be a useful resource?
Always around to lend an ear : )
You are right that the grieving process is the hardest. And it is an on going process. For me each Christmas is a reminder. I go to buy a gift for them and they are much the same as they were the year before. It also affects the siblings. There are some resources out there for families but often they are specific to a diagnosis or aimed at parents of very young children. Sometimes they are designed for those who have severely disabled kids. And I have yet to find one that has a Christian perspective. So yes I think you have hit on a need and I applaud you for seeing it.
My children have no specific diagnosis, although I think they would fit on the autism spectrum. 11 years ago the criteria for a diagnosis of autism was much more strict.
One frustration I have had is getting "at least they don't have...." or "you should be glad they can do......." I would love to have a friend that just listened. No advice, no judgement, don't try to fix me, just listen, care and pray for me.
If you can do that in your practice you will have a tremendous advantage over anyone.
I wish you well.
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RE: Parents with Children of special/high needs childre... - 12/14/2008 11:15:54 PM
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uponeagleswings
Posts: 1628
Joined: 4/12/2005
From: Out here in the desert
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quote:
ORIGINAL: m4maggie
I've noticed *from experience* that there are so many programs available for the child, but very little for parents and siblings, that is... aside from the registered agencies or associations. I just believe that it's not the diagnoses itself that's the hard part, it's grieving the could'ves and shoud've beens. Parents??? am I close? would it be a useful resource?
Always around to lend an ear : )
I'm not a parent, but I can tell you you're definitely on target. I work with kids from ages 0-3 and their families, and there is definitely a grieving process that goes on. Some days I spend more time talking with and listening to parents than I do working with kids (I consider both to be part of my job). I'm only half joking when I say I could use a major in family counseling to go with my education degree.
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RE: Parents with Children of special/high needs childre... - 12/15/2008 1:39:00 PM
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m4maggie
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Thanks for the responses. I do want to focus on a more Christian module of the grief process, especially when given the "gift" of a special needs child. I say gift in quotes because some days, I know it's the furthest thing from... LOL I also really want to focus on the siblings.. probably because I am an adult sibling *also the youngest... there is a lot to face as the siblings get older* It can be very hard as a kid having a special needs sibling.. Heh.. sigh. I watch my twin daughters fight and wish that I could've done that with my brothers... LOL it's funny how you see things differently.. and now.. I'm adult.. I know I'll never be an aunt. I'll never have sisters in law.. *shrugs* but what do you do?
Boo.. I wish I had this poem I gave my parents a few years ago for Christmas. It pretty much said that these children were angels in disguise and that each parent was hand chosen by God to care for them and love them.. it's so beautiful.. we all kinda choked up when we read it together. I'll have to get a copy and post it..
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It's pretty straight forward.. we all know what Jesus would do.. The question, is what would you do?
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RE: Parents with Children of special/high needs childre... - 12/15/2008 1:42:40 PM
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ladyingrace1979
Posts: 413
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From: Fresno CA
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quote:
ORIGINAL: uponeagleswings
quote:
ORIGINAL: m4maggie
I've noticed *from experience* that there are so many programs available for the child, but very little for parents and siblings, that is... aside from the registered agencies or associations. I just believe that it's not the diagnoses itself that's the hard part, it's grieving the could'ves and shoud've beens. Parents??? am I close? would it be a useful resource?
Always around to lend an ear : )
I'm not a parent, but I can tell you you're definitely on target. I work with kids from ages 0-3 and their families, and there is definitely a grieving process that goes on. Some days I spend more time talking with and listening to parents than I do working with kids (I consider both to be part of my job). I'm only half joking when I say I could use a major in family counseling to go with my education degree.
When my girls were in the infant program I considered it my "therapy" too. Those people became such a big help to me in dealing with the changes. Also for my oldest, she was 2 1/2 when the twins were born and she made friends with the staff too.
Kim Q
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RE: Parents with Children of special/high needs childre... - 12/17/2008 9:36:48 PM
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uponeagleswings
Posts: 1628
Joined: 4/12/2005
From: Out here in the desert
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quote:
ORIGINAL: ladyingrace1979
quote:
ORIGINAL: uponeagleswings
quote:
ORIGINAL: m4maggie
I've noticed *from experience* that there are so many programs available for the child, but very little for parents and siblings, that is... aside from the registered agencies or associations. I just believe that it's not the diagnoses itself that's the hard part, it's grieving the could'ves and shoud've beens. Parents??? am I close? would it be a useful resource?
Always around to lend an ear : )
I'm not a parent, but I can tell you you're definitely on target. I work with kids from ages 0-3 and their families, and there is definitely a grieving process that goes on. Some days I spend more time talking with and listening to parents than I do working with kids (I consider both to be part of my job). I'm only half joking when I say I could use a major in family counseling to go with my education degree.
When my girls were in the infant program I considered it my "therapy" too. Those people became such a big help to me in dealing with the changes. Also for my oldest, she was 2 1/2 when the twins were born and she made friends with the staff too.
Kim Q
That's good to hear. I totally consider it to be part of my job. Its all about what the family needs, and sometimes what benefits the family is for mom (or dad) to have someone impartial to talk to about things.
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RE: Parents with Children of special/high needs childre... - 12/18/2008 8:16:20 AM
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KatMack
Posts: 1074
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From: Along the Canopy Roads
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quote:
That's good to hear. I totally consider it to be part of my job. Its all about what the family needs, and sometimes what benefits the family is for mom (or dad) to have someone impartial to talk to about things.
How very, very true! I know how much I struggled after Marshall was born and am beyond grateful for the doctors and nurses that helped me understand everything.
Speaking of Marshall, we went to Shands a couple of weeks ago to see the glaucoma specialist there. She said that we should be able to put off surgery for another year hopefully. They've added another eyedrop to regime, so he's up to three different drops four times a day now. He's such a trooper and is taking care of that almost all by himself now. They were amazed at how good his vision is in the eye with glaucoma. He's 20/20 in his good eye and only 20/30 in the bad eye! That's better than my eyesight and I don't have glaucoma!!! The only explanation is the Lord. He is sooooooo good to us!
--Kat
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<-- My sweet blessings.
"God will do what God will do. What I'm responsible for is to believe he's all he says he is and obey what he tells me to do. " -magdaleine
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RE: Parents with Children of special/high needs childre... - 12/18/2008 2:38:31 PM
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m4maggie
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Joined: 12/11/2008
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Here is that poem I was talking about in my previous replies to this thread.. Parents, I hope you enjoy it.. I still choke up when I read it.. LOL
Heavens Very Special Child
A meeting was held, quite far from this earth
"it's time again for another Birth"
Said the Angels to the Lord above
"This special Child will need much Love"
Their progress may seem very slow,
Accomplishments they may not show
And they require extra care
From all the folks they meet down there
They may not run, or laugh, or play
Their thoughts may seem quite far away
In many ways, they won't adapt
And they'll be known as handicapped
So lets be careful where they're sent
We want their life to be content
Please Lord, lets find parents who,
Will do this special job for you.
They will not realize right away
The leading role they're asked to play
But with this child, sent from above,
Comes stronger faith and richer Love
And soon, they'll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild
Is Heavens Very Special Child.
Edna Massimilla
_____________________________
It's pretty straight forward.. we all know what Jesus would do.. The question, is what would you do?
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RE: Parents with Children of special/high needs childre... - 12/23/2008 11:03:35 PM
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brandynorris
Posts: 66
Joined: 12/11/2008
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My brother has Autism and is 10 years old. The doctors still don't know if that's what he really has or not. He is still in diapers, cant walk, and his muscles in his knees are deteriorating. I live in Kansas with my husband, grandmother, and 2 kids. My brother lives in Tennessee where i was born. I don't see him much and worry about him all the time. My mom doesn't care for him like she should. He doesn't go to any doctors or trainers to get help that he needs and its kinda upsetting.
_____________________________
Brandy
Proud Wife and Mother
<------ My Baby Boy Jaden
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RE: Parents with Children of special/high needs childre... - 12/24/2008 1:48:54 PM
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flyboy2610
Posts: 142
Joined: 5/10/2005
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Just a thought, nut have you considered adopting him? Then he could get the help he needs.
I know you have a full house, already.
_____________________________
If the women don't find you handsome, they should at least find you handy.
Red Green
If you're going to live like there's no hell..... you'd better be right.
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