special needs

[khrisday]

Wether you are parenting, partnering, or caregiving for someone with special needs- let's find each other!

[khrisday]

I am a SAHM and homeschooller to two children with special needs. DS has Asperger's Syndrome (high functioning Autism) and traits of ADHD, Obsessive Compulsive Disorder, depression and tics. DD was born with severe meconium aspiration which required a heart/lung bypass machine for the first week. She suffers from Post Traumatic Stress Syndrome and Asthma from this.

[willibug]

We have recently discovered that my 6yo ds has Tourette's Syndrome. I also have a 3yo dd and 16mo ds. We are strongly considering becoming a homeschooling family as of next fall.

Khris, I started a thread about Tourette's, and you posted a reply. It took me a long time, but i finally got back to it. It's in the Parenting Issues forum.

[khrisday]

I just saw it this morning willibug- I would strongly encourage you to homeschool. It has been so wonderful for us. I look forward to getting to know you better. :love

[heartmama]

Ds is 6, and has had 3 open heart surgeries. Ages 2 weeks, 12 months, and the 3rd one at 4 years.

He was born with multiple heart defects, some of which have been corrected. He is very bright and outgoing. If he does not have Post Traumatic Stress from what he has gone through, I sometimes think I do!

Heartmama

[Els' 3 Ones]

My 3rd child, Duncan, is a boy with Down Syndrome.

He is 3yo and learning sign language. Very speech delayed but strong, outgoing, happy and a funny guy.......................he jokes with us alot!!!!!


khris - thank you for your efforts here. I'm sure we can find a way to come together here and connect with the rest of the commune as well.

:love

[bigcats]

I work at a therapeutic preschool for kids with emotional disorders and behavior problems.

I'd always love to get ideas about ways to work with the kids that are possible given my position in their lives (i.e. I can't do a whole lot about their living situations and interactions with people outside of the school).


This thread is a good idea :)

[Becky N.]

What a great thread! It's sure lonely when the love of your life is different from everyone else's kids!

My Jacob is 2 and has developmental delays- mild in motor skills and moderate in expressive language. Of course, no Dr. or therapist can tell me why, but my gut tells me it's dyspraxia. He also has absence (petit mal) seizures every day, but they're so mild you have to watch for them to catch them. Oh, and multiple food allergies/intolerances.

Besides that, he's sharp as a tack, has a better memory than I do, cracks me up daily, loves to give kisses, and has more energy than I have ever had.

I once read an article by (I think!) Erma bombeck (forgive me if I am plagarizing) about how God chooses parents for kids with special needs......
It went something like this-

************************************************** **

God was talking with his head angel, discussing which parents to match up with new babies that he was sending down to his Earth to be born. He said " Angel, this is a very quiet, content baby. Send him to those parents who have little experience. "

"Yes, Lord," replied the angel. "You know best."

Next, God looked upon a couple whose pregnancy was unexpected and who had doubts about parenthood. God said "Angel, send them this happy, joyous baby, so they can appreciate the gift of new life completely."

The angel nodded and complied, saying "You know best, Lord."

This carried on throughout the afternoon. Finally, they came to their last set of parents. The angel said "Lord, these parents have wanted a child desperately for many years. They hold more love in their hearts than any of the parents we have seen today. They are ready to devote their entire souls to the well-being of their child. Surely you have an equally wonderful baby to send to this deserving couple, Lord."

"Yes, angel, I do," replied the Lord. Send them this handicapped child."

"But Lord, I do not understand," replied the angel. "Why would you make such a decision?"

God replied, "Angel, you have said yourself that I know best, and I do. Only these parents have the patience, the faith, the intelligence, the bravery, the strenth, and the unconditional, unending love that this very special child will require. This special child deserves only the most special parents."

The angel was rightly humbly, and could only nod in agreement.
For he knew, just as we do, that God doesn't make mistakes.


************************************************** **

[Plaid]

I'm married to a wonderful 36 yr old man who has Aspergers Syndrome. Wasn't diagnosed until in his 20's. Was labeled "learning disabled" in school, but is one of the smartest people I know. Homeschooling would have been a much better experience for him than public school was. I think Aspergers kids just have such a different way of looking at things and their needs would be so hard to meet in the standard classroom. However, he did go on to college & has a degree in history.

I am slowly learning about Aspergers. I knew nothing before I met him just three years ago.

We are waiting for our first baby to make an appearance any day now, and I know he will be such a great dad! I am truly blessed to have him in my life.

[heartmama]

I am not at all wanting to come across as a big downer, but I have to add my feelings about that poem (which I have seen many times before). BTW I am not AT ALL offended that you shared it. Everyone should feel free to share what inspires them as parents.

I do not think kids with special needs get special parents. Some kids with special needs have parents who could care less about them. Some are abandoned/put into foster care/neglected because of the parents feelings about the baby's condition. I have seen babies in ICU who never have visitors. It is sad beyond description.

For years I grappled with feelings that this might have happened to us for " a reason"; maybe Karma, a divine plan, whatever. I have finally found a measure of peace in believing that nothing bad ever happens to children for a reason. There is no reason that justifies a baby suffering. I have come to believe it is a senseless tragedy, without inheret meaning, and nothing I could have done would have prevented it. For me, believing that no one is in control of suffering, and God/universe could not have even stopped this--that brings me peace. I would probably be an atheist if I thought God let this happen without stopping it. All I can control is how I respond to something like this when it happens. I find meaning in my response, in the way our life has changed. I find meaning in what comes after.

I realize this is *not* how many parents come to find peace in coping with special needs babies, and we should all cling to whatever it is that helps us cope. But I have only found peace in *not* feeling special; *not* looking for a reason. I accept what happened, and am glad to have ds no matter what we have to go through. I won't ever validate that it is okay, however, that he suffers, because for me it is not. For me, there is no reason that justifies the suffering of children. It is the price we pay for living in a dichotomized universe. That is what I believe...

Heartmama

[khrisday]

Heartmama, I am so glad you shared that- I feel the same way, but was hesitant to share. You always hear people saying "Oh God won't give you more than you can handle" Well I say if that were so there would be no such thing as suicide or mental breakdowns. I know it's probably not a popular view, but it's the way that I feel.

[khrisday]

This is my favorite piece about having a child with special needs:

WELCOME TO HOLLAND
When you're going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michaelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, your plane lands. The stewardess comes in and says,"Welcome to Holland."
"Holland!!!" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence famine and disease. It's just a different place.
So, you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would have never met.
It's slower paced than Italy, less flashy than Italy. But after you've been there for a while, and you catch your breath; you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But most people you know are busy coming and going from Italy, and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say,"Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very lovely things about Holland.
-Author Unknown

[glh]

Heartmama-I had that poem read at my son's funeral. It brought me some comfort at the time, but I eventually came to believe exactly as you do-that no God I want to believe in would make a child suffer on purpose or not stop it if that was possible. There are too many abused, neglected children in this world to believe that "everything happens for a reason". Khrisday-I love the Holland essay, I heard it years ago after my son was already gone, but it is so very very true.

[gossamer]

My husband was diagnosed with Juvenile Diabetes at the age of 3. During his first semester of college he started to lose his eyesight and within 9 months went completely blind. He has no vision what so ever. He has since graduated Summa Cum Laude with a degree in psychology and also graduated from Law school. He passed the Bar the first time he took it. I feel so blessed to be loved by such a wonderful man. I met him about 15yrs after he lost his eyesight. He is so kind and compassionate. I tell him when I met him I went down my list of characteristics I want in a husband. After checking them all off, I realized no where on my list had I put "must not be blind". It's been a great ride these past five years. I can't wait to see him parent. He will be so awesome.

[khrisday]

Wow gossamer- what an amazing man, and a source of inspiration!

[gossamer]

Thank you. I always look to him when I find myself in difficult times. He IS inspiring. I always ask myself, am I doing everything I can with all of my god-given abilities?

[heartmama]

((((glh))))....I don't know what to say. I am so sorry. I hesitated to criticize that poem for this very reason. I know it is a precious thing when something comforts us, and is certainly above any reproach. I know you said you eventually agreed with my sentiment, but still, I am sorry that I said anything which might have brought you sadness.

I must have missed your post about your son. Would you might saying a bit about him, if you want to?

I am very sorry for your loss. I can't imagine what you have gone through. Words just aren't enough...



Heartmama

[heartmama]

khrisday...you are right. Have you read the book "When Bad Things Happen To Good People" by Rabbi Harold Kushner?

He essentially says the exact same thing about the "You will never get more than you can handle" comments. I was very impressed with that book.

Heartmama

[khrisday]

Heartmama I haven't read that one yet, but I have heard from others that it is a good book. It's on my (10 foot long and getting longer by the minute) list of books to read. ;)

[Els' 3 Ones]

The Holland piece was written by Emily Kingsley who has a son with down syndrome.

I read that soon after Duncan's dx and it brought me so much peace. It helped to identify the emotional roller coaster we were feeling.

[khrisday]

What other books have you all read that have been helpful? I liked Dr. Greenspan's book- You Special Needs Child I think it's called.

[swolf]

Just poking my head in here. I have a thirteen year old daughter (turning 14 this summer) with Aspergers and a two year old (happy birthday last week!) son with autism. Also a typical (well, sort of ;)) eight year old daughter. We don't homeschool anymore because it's not right for me at this point in my life - who knows what the future holds, though? I'm happy to see this thread.

Stephanie

[heartmama]

Welcome to all the new faces!

Wow, swolf, I am speechless that you have 2 children with autism spectrum diagnosis'. Do your doctors feel that there is a genetic factor at play? I hope you don't mind my asking. I have a friend and both her children are diabetic (one diagnosed at only 10months old). They are in a research program through a university that studies siblings with identical diagnosis'.

How have others coped with the "second child" issue (assuming the first child is the one with special needs). Are you scared to try again? How do you work through that process?

Heartmama

[khrisday]

We weren't going to have a second one- she was a surprise!

[ypsimer]

hi! i teach high-schoolers with special needs (add/adhd, dyslexia, developmental disorders, asperger's, some autism, some general social functioning stuff) at a really small private school which is a wonderful place. it's nice to see a thread like this, bc it seems that the parents of the kids i teach often feel really isolated bc they have to look at the world so differently from other parents. we have that holland poem posted in the school, and it makes a lot of sense. the kids, by and large, do fine once they're in an environment that meets their needs. we have a really cool school. i'm hoping to get more perspectives on kids like the ones i teach. i have two of my own, both boys, but neither one has special educational or developmental needs. :hippie

[Zooran]

My partner and I are raising a son, almost 3, Riley, who was born with many complications (another post-Incompetent Midwife if you want the story). Anyhow, he was diagosed with meconium aspiration, cerebral hemhorrage, seizures, and vocal cord paralysis (the kid gets around for not being 24 hours old yet!). Later, he was found to be significantly speech delayed (9mo level at 18 months of age). Therapy seemed to have jump started that skill. We have watched him closely and carefully and he is a wonderful child who has outgrown his diagnoses. He was formally released from the neonatology development program at our local hospital and is developmentally on target. We are very blessed with our son.

We are now hoping to adopt a special needs child in the near future. Spouse is a therapeutic recreation specialist and I am a retired social worker/paramedic. THANK YOU for starting this board! The best support I ever received was from other parents who were in a similar situation. I'm here to support any parent who needs a shoulder!!

Kellie in NC

[khrisday]

It's nice to see some people who work in the field here as well- welcome to all!

[khrisday]

Depression is much more common among parents and caregivers of people with special needs than the general public, and it is obvious why. Sometimes life really does seem a drugery and I allow things to get me down. We have been dealing with a lot of behavior issues and aggression lately and it has just worn me out.

I almost lost it at the park today- I was trying to make a call on my cell phone and only half watchin my son. He was up in a tree and two neighborhood boys were under the tree. I figured they were playing, that was good. The boys approach me and tell me my son has thrown a toy and hit one of them in the head. They looked at me expectantly as if I would have some magic band aid. Here I am thinking- first of all, it's already happened- I can't go back and change it, secondly I can't even keep this kid from attacking ME lately, how am I going to stop him from hurting anyone else. I asked the kid what he expected me to do, they judt said "well you're his mom"- as if birthright gives you magical powers. Which brings up another issue entirely- he is the ONLY 6 year old who needs his mom watching him at the park. Nobody else has to be there with their 6 year old, in fact nobody else even goes with their 4 year olds, I'm the only parent at the park most of the time. I told the kids to ask him why he threw it and he had a perfectly good reason (at least in his mind). I just get so frustrated and burnt out sometimes, I know that times are really tough right now and that they will get better, but that doesn't necessarily help.

Oh, this tuned into a whine, sorry. How do other people deal with behavior problems and social issues?

[Zooran]

I don't think you are whining!! You have a rough situation, no two ways about it. And the amount of time and energy it takes to continually "educate" others (kids, parents, friends, etc) takes its toll. :eek Here is a good place to vent or whine. We understand! When our son was born and was so medically fragile, I actually had someone tell me that I was going to spoil him if I kept "anticipating his needs and didn't let him express then". I could understand this line of thinking had our son been 2 or 3 at the time, but he was a newborn and whenever he got crying, he turned blue!!! So, absolutely, no crying in this camp. You go girl!! I'm on your side!~

[festivus1]

khrisday: you mentioned Dr. Stanley Greenspan's book several posts back. I used to work in an early intervention program and had the awesome privilege of attending a workshop/training of his in Arlington, VA in '96. He is one incredible, amazing guy and I learned so much during those three days. I own the book The Child With Special Needs . I highly recommend it to any parent - but especially to anyone whose child has been diagnosed with PDD, autism, etc.

[heps]

Hi everyone, I am new here. My ds was just diagnosed with juvenile diabetes last Friday. We almost lost him. I am going through a lot of emotions now.

[LisainCalifornia]

Hello everyone,
First of all, Heps--I am sorry about your son's diagnosis. I know that JD is a very serious condition, and you must be so worried. :hug

I have an 8 year old son, Matthew, who was diagnosed with Tourette Syndrome, ADHD and OCD at age 6. He pretty much put the HIGH in the term "high needs baby". :rolleyes: But I am still alive to tell the tale, and he just keeps getting more interesting.

One issue that is tough when raising a child with special needs is the issue of friends--for not only Matthew but myself. Lets face it, I don't have the *normal* kid who is invited to playdates and birthday parties (he has been invited to 2 birthday parties--in kindergarten at the beginning of the year, before anyone knew us!). He is very impulsive, and at the same time gets his feelings hurt very easily. When it is just me and him we are fine, but dealing with other kids is tough, and parents of *normal* kids just DON'T understand, KWIM?

So I have found that this has made it tougher for me to form friendships as well...because the other friends would be moms that would have to deal with Matthew as well as me. He is a very smart kid--his teacher told me that when they tested his IQ they were shocked at how high it was--he is just off the charts. I don't think other people see this in Matthew--they just see the negative, and I see so much positive.

Like with the in-laws...so, he can't sit down at the dinner table but is up and down and around and under the table--he has so much energy it is actually painful for him to be "still". They can't see that even though he is not sitting there with a napkin in his lap and answering their questions politely he is loving being there with them and taking everything that is said in.

I just thank God that I naturally gravitated to being a AP mom, because if I had been a stickler for every rule and schedule I would have killed either Matthew or myself a long time ago. Even with all of his challenges he is a very loving boy--and does he EVER love his Momma! I have always been a very "march to the beat of a different drummer" type, and I feel like it has helped me adapt to having a special needs kid--do you all feel like that too? I mean, of course it is hard...we all have those fantasies of that "easy" polite child that sleeps well and is quietly friendly, but I also feel so lucky to have such an unusual boy.

Hugs,
Lisa in California :)

[khrisday]

Hi Heps and Lisa- welcome to both of you!

Heps, I hope you are finding the support that you need right now for all of your family. We have a friend who has juvenile diabetes, and they handle it very well, but it is a really difficult thing to have to deal with.

Lisa, we are close enough that we really should get together someday- my son is very similar to yours and friendships are difficult for us as well.

[heps]

Thanks for the welcome! We are actually handling ds' illness better than I thought we would. I think that initially since we almost lost him, we were just so grateful that he survived that we did not think about all of the life changes that we would be undergoing.

Since we have been home from the hospital I think the whole reality of the situation has hit me a little harder. Of course, being a typical mother I am experiencing guilt over what I could have done to prevent this. It is so frustrating to do everything "right" and still end up with a sick child.

The hospital wasn't too terribly helpful getting us lined up with resources so I have taken it on myself. I have already contacted a LL leader who has a child with diabetes and I have been researching who I want to treat ds. We have an appointment set up for September at a great hospital. I can't wait to see what they have to offer.

Ds' sugar has been a little difficult to manage and he "crashed" a lot the first week home. That is not good. Basically when that happens he can go unconscious or have a seizure. We have to force feed him sugar at that time. This is a child who has been predominantly nursing so I feel like a nut force feeding him a bottle of apple juice. I was not even planning on giving him juice regularly. The good news is that the last couple of days we have had him regulated pretty well because we adjusted his dose of insulin.

[mamalovejoy]

Hi Everyone,

I'm Vanessa, mama to almost 3 y/o triplet daughters, Holly, Amber, and Nina, and I'm so happy to see this thread here!

Holly has mild spastic quadreplegia cerebral palsy due to Twin to Twin Transfusion Syndrome (Wondering about TTTS? Check out http://www.tttsfoundation.org ). Anyways, at nearly 3 y/o Holly can roll all directions when she wants to, chair and bench sit well and consistently, floor sit well, but still inconsistently, stand with assistance, and step/walk with assistance. In all other areas of development Holly is at or above age level expectations. Holly's therapy includes PT, OT, horsebackriding, swimming, and rolfing.

Nina was just dxed with mild autistic disorder. The good news is that she is only mildly affected. In fact, the specialist we saw said Nina is probably the mildest case she's ever seen and that she doubts Nina will meet diagnostic criteria when she's 5 or 6 y/o. Nina is much more PDD-NOS like, but she clearly exhibits 10 out of the 12 criteria, so she was given the dx of autistic disorder. I'm now trying to get Speech and Language Therapy, and OT started (she also has a lot of mild sensory issues). I'm currently reading Greenspan's The Child with Special Needs book to learn about floor time which the specialist thought would work well for someone as high functioning as she is.

Amber is typically developing, but very spirited, and in many ways the child who is most difficult to parent! Amber is Holly's identical sister and also suffered from TTTS in utero; however, she has done amazingly well judging from the statistics.

They're all great kids, and I credit responsive parenting!

Wanna see 'em? Check out our web site at...
http://girlsoflovejoyland.tripod.com

[6Muffins]

We have what i call a fragile family
1) because families are so fragile and
2) cause 4 of my 5 children have fragile x syndrome

I am the carrier :D
16 yrs son has frag x, autism,ocd,add,epilepsy,mild to moderate hypotonia
6 yr son has frag x,autism,ocd,adhd,mild to moderate hypotonia
5 yr girl has frag x(only mild thou)
2 yr son has frag x,autism,ocd,add,severe hypotonia
1 yr untested baby girl( but she shows no signs:)

[gossamer]

Hep,
I just wanted to say hi and to let you know that if you have any questions or need support, I am here. My Husband is 41 and has been a juvenile diabetic for 38 years. I am very familiar with a lot of the research, and treatments available for JD. My prayers are with you. How old is your son? Please feel free to pm me if you have any other questions or just need a shoulder to cry on.

Gossamer

[khrisday]

Welcome to our two newest friend- you both have your hands quite full!

[PM]

I hope you all don't mind that I read here. I like to follow Peggy around! Hi Peggy!

Becky N. You described my cousin to a T. He is now 21 or 22 but as a toddler he was told (or rather my aunt was told) that he would not make it through puberty. That just shows you how much doctors know! I was just wondering if you would like for me to get more info from my aunt on what exactly he suffers from. The only time I ever met him was when he was 5 and we just formed this incredible bond and he still talks about me all the time! He would talk very slowly and have petit mal seizures: We were on the couch once, stretched out with him on top of me, and his eyes started to flutter. I asked, "What are you doing?" and he answered in his sweet little voice, so slowly, "I'm having a seizure." I was 13 and I just couldn't believe I had this courageous 5 year old having a seizure on my lap! Anyway, if you would like me to find out more, just tell me.

[Becky N.]

Hi, ParisMaman,

Any info you could get me would be wonderful.
Jacob had 2 eeg's done and neither one picked up any detectable seizures- but they don't always show up on EEG's, either.


I've been feeding him a pretty limited diet because of his food intolerances. For the first time in his life, his poop is actually formed and not mucousy! AND, I've noticed that he has a lot fewer "episodes." When he does have them now, they don't seem to be so "deep". I can snap him out of them wheras before I could not.

did your cousin have any sensory processing issues? Jacob has trouble sustaining eye contact, too, but that has also improved with practice. We're starting speech therapy next week (FINALLY) I'm really excited, but I know its going to take time to see progress. I'll just be so happy when it's not so frustrating for him to try and communicate. He uses about 20 different signs, but very few words or consanants. I'm so tired of hearing "GUH!" (His favorite all-purpose word)

The most frustrating part of this whole thing is trying to find medical professionals that know more than me ~sigh~
I'm on pediatrician #4 now, LOL! Seems like if they can't fix it with amoxicillin, they're stumped!

Becky

[texasmama]

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.

[peggy]

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.

peggy

[Beck]

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.

[khrisday]

Welcome Beck- I love the way you describe your son!

[Delilah]

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.

[SUSANNAHH]

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.

[stepkoni]

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.

[flminivanmama]

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?)

[stepkoni]

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).

[khrisday]

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!

[heartmama]

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!

Heartmama

[TreeLove]

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.....

[peggy]

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??

[TreeLove]

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.:crying

[peggy]

(((Treelove))) I'll pop over there and take a look..

Hang in there honey! Pm me if you need to talk

[Deirdre]

(((((allmommiesonthisthread))))))

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.

-Deirdre

[stepkoni]

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.

[shematrix]

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?

Brenda

[TreeLove]

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.

[shematrix]

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:)

Brenda

[khrisday]

I'm glad the subject of medication came up here- it's one that is difficult for all of us. Many times I feel that parents of "perfect children" judge us when they hear that we have chosen to use medication for out children. ("They just need to parent more effectively, change the child's diet, or be more patient") I was very opposed to medication for my son when he was initially diagnosed. After several years, I realized that there was something going on in his brain that could be helped by some medications, and that it would allow him to lead a more fulfilling life. If he were diabetic, I would not think twice about allowing him to have insulin. But because the problems are in his mind, we scrutinze our decisions. We recently had to switch medications, and I am coming to terms with the fact that he will probably need medication to help maintain a sense of normalcy throughout his life. And that's ok, it's wonderful that the medicationis available. It allows him to live a full life instead of being locked away from society in a home.

[TreeLove]

krisday-that's EXACTLY how I describe it to others, like diabetes. shematrix-Emmet is definately a danger to others-he actually choked a classmate a few months ago-at age FOUR!!!!! Abe had the signs of PTSD at age 2 because of their behavior. I'm hoping that meds will work for a couple of years til we (the parents) find alternatives-but we just couldn't wait any longer. They actually have HAPPY times now!

What meds are you guys using (if you don't mind my asking....)

We use resperial for Emmet, seroquel for Gus and they both get Clonidine at bedtime. I really hate the Clonidine, but it's a neccessary evil right now....

[shematrix]

Concerta, Resperdal, and Clondine.

The Clondine is for at night. Without it, she is up ALL night, crying that her brain won't let her go to sleep:( I ask her dr. about taking Melatonin(sp) at night instead of the Clondine. He said sure! but when I ask him what dose, he had no clue:( All he could say is it wouldn't hurt to try. I did some research but couldn't find anything that reassured me on the safety issue for young kids or a starting dose. Of course, with Clondine you can't stop it abruptly. To dangerous. She hasn't had any side effects from it. She has been on a low dose of it for a while. It's funny I worry about the Melatonin, considering what she is on now. Just without some guidance on taking it makes me leery. (sigh)

Concerta is for the ADHD. OMG! WHat a difference this med has made. We tried Adderall and Adderal Extended tab and that was a freaking nightmare. Every side effect a child could have she had. She also started displaying awful motor and vocal tics while on it. DId the med cause it? No, but since she was predispositoned to them it did aggravate them. I was praying that once off that med they would improve. They did to an extent, but did not go away completely... wich leads me to the..

Resperdal. Without it, she is into full blown vocal and motor tics. I tried weaning her off it, but within two days she was clearing her throat so hard and often she was bleeding. She was jerking her head so hard it hurt her neck. Also head banging out of the sheer frustration.

I hate that my daughter has to take these meds. But, I'm exteremly grateful that they do exists.With them she can lead a more normal less painfull life.

It breaks my heart when uneducated people think that parents of children on meds do it just to medicate their children into submission and make zombies out of them. Nothing could be farther from the truth. I have heard a range of opinions on to why my daughter is like she is. Oh, it's something the medical doctors came up with just to make money, she needs more discipline, she needs less discipline, I need to be a better parent..... ETC ad nauseum.

It was a long, hard, painful journey to get where we are today. We tried the no med route and it got us no where. Now with a combination of meds, behavior theraphy, good diet, counseling, and support structre in place she has improved one hundred percent. Medication alone didn't work or any of the other things tried on their own. But the combination of all that has worked wonders. I am extremely proud of my daughter. She has worked so hard this past year. She is in a classroom with her peers now and is loving every minute of it.

Sorry so long.
Brenda
nak

[kittyb4me]

Hi everyone,

I stumbled onto this thread when I did a search for dyspraxia. My 2 1/2 yo son has recently been dxed with severe verbal dyspraxia and mild sensory issues. I am trying to find others in my shoes and get some answers. Owen is also very bright and loving, so I feel extra bad for him at times, as I know when acts out, it is usually due to frustration at not being able to express his wants effectively. I am trying to be very patient with him, b/c I know he tries really hard to communicate. I am just glad that we finally know what it is we are struggling with. We have been told for awhile now that Owen was speech delayed b/c he has an overabundance of earwax! This just never seemed right to me, so I kept digging....

Anyway, glad to see we are not alone in this jungle! Here's a hug to all of us trying to creatively parent kids with different needs. :grouphug

[shematrix]

Hi kittyb4me. I'm not familiar with dyspraxia. Would you explain what it is please? Is it a specific type of speech delay? I am glad you have found answers finally. Good for you for continuing to research until you came up with answers you were satisfied with. We are our children's biggest advocates! :)

Brenda

[shematrix]

Well, I decided to go ahead and try a small dose of Melantonin. I started halfing her Clondine on the 19th and giving her 300 mcg of the Mel. YAY!!!! It is working!!!! I'm going to continue with this for a while and then cut the half in half and see how that goes.

I would love to be able to wean her off the Clondine.

Wish us luck,

Brenda

[kittyb4me]

Verbal dyspraxia is a neurological motor planning disorder. That means that you know what you want to say, but you cannot coordiante your muscles to make the proper movements to form sounds. Owen understands everything you say to him (at least at his age level), but cannot get his thoughts back out. This can also tie in with Autism, ADHD, etc. Owen also has some sensory issues with his mouth and face, eg, HATES having his face washed, very sensitive to towel drying his hair, still drools, very picky about food and trying new things, still chews on toys, etc. We will start some intensive speech therapy (pending approval by insurance, a different can of worms!) and we are doing some Essential Fatty Acid supplementation. I have heard some very positive input about EFA supplements, and we are hoping this will help Owen. Hope this clarifies what we are dealing with. I definately feel like the low man on the totem pole though seeing what other parents are dealing with!

[shematrix]

Thanks for the explanation:)

Shoot, we are all in this together. No one families issues are any less important or challenging than anyone eleses.

Sensory issues can really be trying. My daughter has some hearing and skin sensitivity ones.

I hope the theraphy and supplements help your little guy. I can't imagine how frustrated he must get:(

Oh, and I hear you about the insurance! The one good thing about my daughter being in public school is she gets to go to the school based clinic for free. We still shell out over 200 bucks a month for meds though:eek

Hang in there!

Brenda

[craftymom2three]

My ds who is now almost four, was injuried at birth by a resident physician who delivered him. He was a large baby (over 11 pounds) and got stuck in the birth canal after his head was delivered. He was without oxygen for three minutes, but thankfully, he's okay neurologically. HOwever, when the resident hurriedly pulled him out, she tore the nerves in his neck which make his left arm/wrist/hand/fingers function and he was left with a totally immobile arm. :crying

We were told, "it's okay, it will get better in a couple of weeks"...we waited and waited and nothing happened. After about 5 1/2 months of messing around with a doctor in our town who basically wanted to use ds as a guinea pig (he's the only child in the town of 116,000 with this injury), we emailed a surgeon we'd found out about at Toronto's Hospital for Sick Kids. Ds was diagnosed as needing surgery and two weeks later, he'd had it...all 13 hours of it at the age of six months.

He just had his last followup appointment at Sick Kids and sadly, all the function he's going to get, he's gotten. His arm will just get stronger now....it was left about a hand shorter than his other one and very weak finger function, but he can feed himself, pull up his pants after going potty and push his arm through a shirt. That's all we'd hoped for actually, as some never regain this much function.

Anyway, there's my intro....anyone else out there with a child with BPI or Erb's Palsy??

Lisa

[Mommasgirls]

I thought I posted to this thread already:confused: My oldest DD is in the process of being tested for ADHD,OCD,TS, and Asperger's Syndrome.
We have our first evaluation appointment on May 13. What should we expect-any ideas?
Ooops gotta go my DD's are fighting about something

[patnrose]

Hi All!

Both of my children have special needs. My 2 year old, Anna, has a severe speech delay, and I am thinking she also had PDD. My son Thomas (seven months) suffered a stroke in utero and has some minor physical problems from the damage done to his brain. He also had seizures from the stroke injury and is taking phenobarbital for that.

I am glad to be here with all of you. :)

[khrisday]

I just wanted to welcome all the newbies and check in.

Mommasgirls- most of the testing that we have been through is just the doctor asking us questions. A few things for the kids to do, but not much. Bring an and all records of development, a list of concerns, family history, and anything else that may be helpful for the doctor (teachers reports, etc). Also bring something to entertain your child while you speak with the doctor so she's not bored.

Treelove asked about meds- Jack is on Tenex, which is similar to Clonodine ( blood pressure med, but does not have as much of a sedative effect) for rages. It has really helped him.

Keep on keepin on, mama's and papa's!

[JavaJerri]

I am a SAHM, homeschooling mom of two sons. Ds #1 is 11 and ds #2 is 2. My oldest son has Aspergers (we just officially found this out yesterday, although it is no suprise) and the younger one is, well, TWO! It's nice that this place is here.:)

Jerri

[khrisday]

JavaJerri- I also homeschool a son with AS.
Nice to see you here!

[mom@home]

Hey folks, I was very happy to see this thread here. I have 3 sons. They are 6yrs, 5yrs (who says you can't get pregnant nursing) and 14 months. The oldest has diagnosed Aspergers and adhd. He is on Tenex and Concerta. I definately can understand the partent who wrote about feeling bad about giving your child medication. I am a "natural" sort and it went against my first instincts. not to mention that pre-kids I thought all those hyper kids needed was better parents and to play soccer. But now I've come around (mostly) and kind of view it like if my kid had epilepsy or diabetes or some other medical condition that required daily medicine ... would I hesitate to give it to him? Would I be judged by other people for giving it to him?
My oldest has taught me so much about patience and now even though things don't turn out like you invisioned them it can be great how it is. He has really helped me to be a better mom and a better person.

[khrisday]

By the way folks- there is actually a Special Needs folder now- it's in the Parenting folder, so it doesn't show up unles you click on Parenting from the main page.

[peggy]

Yes, the new special needs sub-forum is now open and ready for posting!!

Here is the link..

http://mothering.com/discussions/forumdisplay.php?s=&forumid=157

Welcome All!!

[abimommy]

moving this thread to the new subforum..:)

[khrisday]

abimommy- please leave it in finding your tribe. People may not be able to find the sub-forum unles they know it is there (I didn't know it was there, and I am here a lot), and I already started a new rold call thread there.

[abimommy]

urm..maybe we need a sitemap...

[SUSANNAHH]

hello! I have a 9 month old ds with down syndrom and a 4yo dd who has developmental delays-speech, fine and gross motor skills. she attends a montessori and a developmental preschool along with speech and ot. I struggle with the services and what will be up against when she is school age (she can attend montessori for kindergarten) i always assumed my kids would nevr do any traditional educational stuff . it is strange how folks don't want to be in "the box" when they can be but when they can't fit into"the box" they are expected to. sometimes i feel so mixed up about my own personal beliefs and what is best for my children and how much i am being brainwashed. i just trudge along and make choices everyday that i believe are the best at that time. anyway welcome to everyone and I am glad to be a part of sucha fantastic group of amazing parents!