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special needs - Page 2

post #21 of 81
Thread Starter 
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.
post #22 of 81
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
post #23 of 81
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
post #24 of 81
Thread Starter 
We weren't going to have a second one- she was a surprise!
post #25 of 81
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.
post #26 of 81
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
post #27 of 81
Thread Starter 
It's nice to see some people who work in the field here as well- welcome to all!
post #28 of 81
Thread Starter 

Depression

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?
post #29 of 81
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. 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!~
post #30 of 81
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.
post #31 of 81
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.
post #32 of 81
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.

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". : 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
post #33 of 81
Thread Starter 
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.
post #34 of 81
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.
post #35 of 81

My intro

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
post #36 of 81

My fragile family

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
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
post #37 of 81
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
post #38 of 81
Thread Starter 
Welcome to our two newest friend- you both have your hands quite full!
post #39 of 81
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.
post #40 of 81
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
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