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special needs - Page 3

post #41 of 81
Hello everyone.

I'm mom to Ds with Down Syndrom. He is 10 yrs old. He was a preemie (29 weeks). He was in the hospital 3.5 months after he was born. He was on C-Pap for 2 months. He had PDA heart defect (corrected at 19 months).

Ds no longer lives with me. His father and I divorced in 1999. Ds became excessively violent with me and others. He was kicked out of 5 day cares and almost kicked out of public school. My family was affraid he was going to kill me. I was affraid too. I love him so much and felt like I had failed him as a mother. I could no longer take care of him on my own. His father told the judge that he would pay child support but never wanted to see him again. I still cry over that.

I had to look into placing him into foster care or group housing or state schools. No one would take him (he was either too young or too violent). That made me cry. I wanted to take care of him but could not.

My sister and her family decided that they would take my son into their family. They would do this if I let them adopt him. I did.

We have an open adoption. Ds has been with them for 2 1/2 years. He is happy and adjusting well to their family. He is thriving in school. He has siblings. He has a full family unit. I love my sister for giving me this blessing. I see my Ds whenever I can. He knows I love him. He doesn't really understand why he can't come back to live with me. That breaks my heart.

I am remarried now. We discussed my son with my sister. We believe that it is better for my son to stay with her. Her son is the same age as mine. He needed siblings. I could not give him that when he needed it.

My husband and I now have a baby daughter (7 months). She was full-term and so far seems to not have any special issues other than being "high needs". My son loves his "cousin". He is very gentle with her. He is still a part of my family. I will always love him. He will always be my son.
post #42 of 81
Gosh I thought I posted to this thread!!

My daughter Molly, who is five years old, has achondroplasia. This condition causes her to have an average sized torso, a slightly large head, and very short arma and legs. Her adult height is expected to be 4 ft. tall. Dwarfism does not run in our family. We were told this was a spontaneous gene mutation.
She has been lucky and has not had any of the severe health problems that can be related to this condition.
Her "problems" are mostly social in nature. "Lookism" is starting to get really tough.
I also have a son who was diagnosed with OCD and Severe Anxiety Disorder at age 17, he is 22 now, and has his ups and downs.
Nice to meet you all.

post #43 of 81
My son has an as yet undiagnosed disorder, although the geneticist believes it may be Proteus Syndrome. This is a very rare condition, less than 100 diagnosed cases worldwide, ever. Joseph/John Merrick (The elephant man) is said to have had proteus syndrome. It causes asymmetrical growth, tumours, gigantism of hands and feet. Ds has developmental delays, primarily in language and gross motor. He has exceptionally cuteness and hugging skills though.

I have lived with an undiagnosed seizure disorder and some mental struggles.
post #44 of 81
Thread Starter 
Welcome Beck- I love the way you describe your son!
post #45 of 81
We have a five year old diagnosed with Pervasive Developmental Disorder (PDD). He is becoming more verbal all the time. He is very bright, but we know he'll do better as time goes by and he develops more coping skills. Our three yo is speech delayed, but does not appear to have autism.

Genetic? I think autism is mostly genetic, but it is so hard to pin it down. Does a gene mutation in a specific place cause the brain to hardwire differently? They haven't been able to pinpoint specific genes (last I heard). Also, what about the children who have overcome their autism through special diets, vitamins or other alternative treatments? Why is it showing up in clusters in some places (environmental problem?)? I think it is very very complicated, and I don't expect a precise etiology for decades.

I know that breastfeeding has helped tremendously. It may be the only reason our ds is verbal since bm helps brain development. It may be possible that the close bond of breastfeeding also keeps our son attached to us, one foot in our world, one in his.

One of our biggest challenges is safety of both children and discipline for that purpose. We are in constant lockdown here.
post #46 of 81

down syndrome

i have a 3 month old ds with down syndrome and a 4 yo dd with some developmental delays. i continously struggle with providing the chidlren with therapies and programs from agencies to most effectively assist them in using their bodies (fine and gross motor skills, etc.) and providing them with the lifestyle i most want for them. my daughter is in montessori now 4 mornings a week and a developmental preschool in the afternoons 3 days a week. we are not certain we will send her to a public school when she is old enough, thinking of maybe homeschooling or an alternative school, not sure yet. The therapists do everything they can to discourage this. I know the presssure will only get worse for my ds as he gets older. It is reassuring to see other folks choosing an alternative lifestyle to raise their children in despite any barriers they may come up against. when i deal with the state agencies it often feels as though i am the first person they have ever encountered who does not want to follow the path they suggest.
post #47 of 81
I had meant to post here but instead pushed the New Thread button by mistake. Please see my post entitled "Phoebe". She is a special needs baby with a chromosomal defect (Trisomy 13). She was expected to die within days after her birth, but 3 months later, she's still with us. The hospital set us up with hospice care and the hospice nurse is still coming every week. It's draining our insurance. But I'm not sure whether I should fire them, because I might need them if something happens to my daughter. The one thing I adamantly feared and dreaded most in my life and swore I would never allow (having a defective child) has come true. This is very hard, but I know it's for a higher good.
post #48 of 81
I thought I posted to this thread too... hmmm

I have a son (one of my twins) who is developmentaly delayed and has SID - Sensory integration disorder. He has low muscle tone, vestibular issues, and proprioceptive issues.

He was born at 29 weeks but we are still putting all the puzzle pieces together as to what caused this (mercury? prematurity? c-section? genetics?)
post #49 of 81
Delilah wrote: "Genetic? I think autism is mostly genetic, but it is so hard to pin it down. Does a gene mutation in a specific place cause the brain to hardwire differently? They haven't been able to pinpoint specific genes (last I heard). Also, what about the children who have overcome their autism through special diets, vitamins or other alternative treatments? Why is it showing up in clusters in some places (environmental problem?)? I think it is very very complicated, and I don't expect a precise etiology for decades."

There is increasing evidence that autism is caused by the mercury in vaccines. Was your child vaccinated? And yes, I've heard that autism can be reversed.

On another note, I wish everybody could define all these acronyms being used in this forum (e.g., OCD, OT, etc).
post #50 of 81
Thread Starter 
Personally, I think (and much of the new research is supportin the theory as well) that the causes for Autism is two-fold. I think that there is a genetic predisposition for the disorder, compounded by a trigger event (ie vaccine reaction, prematurity, illness, etc)

Some of the acronyms are:

OT- occupational therapy
ST- speech therapy
SLP- speech language pathologist
AS- Asperger's Syndrome
PDD- pervasive developmental delays
TS- tourette's syndrome
OCD- obsessive compulsive disorder
PT- physical therapy
ADHD- attention defecit hyperactivity disorder
SID- sensory integration dysfunction
PTSD- post traumatic stress disorder

any others you come across- post here and we will try to help ya!
post #51 of 81
Just want to add a welcome to the newer posts in the thread. It slowed down for awhile, and I was just checking back in!

post #52 of 81
hi! I'm Shannon and I have 4 yo twins, former 29 weekers w/ TTTS, SID and PDD and asthma. My "donor" twin is also FTT (failure to thrive) and has a heart defect. My "recipient" twin has VERY HIGH ANXIETY which makes it hard for him to do ANYTHING by himself (including toileting). They are both violent which has resulted in our 2 year old having borderline PTSD. They both attend a preschool program for special needs children. They are currently on meds, and that has made life more managable.

My biggest problem is my husband, not the boys. He REFUSES to "get on board" re: PDD. He refuses to help them in the ways that they need it, like keeping to our schedule. He actually ARGUES with them and says stupid stuff like knock it off or I'm never going to take you out with me again. He also JOKES with them (PDD kids don't usu. "get" jokes) so this causes them to have melt downs, which resultas in him punishing them which causes a bigger melt down and on and on and on. I run the whole house, the boys, everything. He just wants to bring home a paycheck and be left alone. I'm seriously considering a possible separation.....
post #53 of 81
Hey Treelove!! It's good to see you back around here!!
As hard as the diagnosis is, it must be a relief to you to finally know what's going on with the boys. I remember a long time ago (on the old boards) you were questioning and worrying whether you were a "good mother" because of everything your family was going through. At least you now have a diagnosis to work with and a plan to help them.
I can imagine that things must still be quite challenging..how are you holding up??
post #54 of 81
I'm not. I've been fighting tears all morning and the children are in rare form, to boot. Please see my post in parents as partners.
post #55 of 81
(((Treelove))) I'll pop over there and take a look..

Hang in there honey! Pm me if you need to talk
post #56 of 81

Hi all

I don't have a child with special needs but my nephew is currently in the process of being tested/diagnosed with ADHD. My SIL is really struggling with it.....so I may be looking to all of you for advice and support.

Also my BIL, who is 49, has Aspergers. I have often wondered if having someone in the family on the autism spectrum predisposes dd to it? I have been cautious with vaccines as a result.

post #57 of 81
Treelove--I remember you! You are a very strong and intelligent woman and I salute you for being able to handle all that life has thrown your way. I'm sorry to hear that you're still having trouble with your husband. I'm kind of surprised that you guys are still together. Do the meds that your children take helping? I may get some flack from many of you on this thread for saying this, but I'm very suspicious of medication, especially to alter behavior. I feel that often the pharmaceutical companies create the drug and then make up the disorder for which it's used.
post #58 of 81
Hello everyone. I have daughter who has ADHD/TS. She is doing much better now. Thank goodness. We have had some really rough times, but it seems to be getting a lot better.

I have read through all the post in this thread. Best wishes to you all. How is everyone and their children doing?

post #59 of 81
The meds are working BEAUTIFULLY!!!

It doesn't change WHO they are, they just are more reasonable. They still have meltdowns and Gus will forever be an ornery ol' man, but it helps them to control their impulses a bit more. We still have TONS of work to do, but it has made it possible for me to take a shower or fix supper with out blood shed! AND they have been saying nice things to Abe and including him in games-that is a first.

They still don't cooperate, but Emmet hasn't bitten Abe in months. That was something he had been doing 2-3x a day. Abe is a MUCH happier boy. He used to scream, run, and hide when he heard his brothers starting to get upset. Now he just stays in the room and argues with them, like regular siblings-and he usu. doesn't get hurt.

I fought the idea of meds for years, but just this past weekend we had a whole day of pleasant, regular, kind behavior. I was so RELAXED by the end of the day. I haven't been able to relax in about 2.5 years.....really. I mean it.
post #60 of 81
That is great news TreeLove! My daughter is also on meds. I have made peace with our decsion to put her on medication. We had tried everything. It has made such a difference! It hasn't changed who she is, just how she handles situation and it has her impulsivness under control. She was a danger to herself and others till we got her on medication and got it worked out. She also has TS and without the meds she has a diffucult time even functioning.

I'm glad to hear everything is going better

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