Parents with Children of special/high needs children support thread (Full Version)

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nicole6598 -> Parents with Children of special/high needs children support thread (8/24/2008 3:14:34 AM)

Hey!
So I thought that it might be good to have a thread for parents with children (of all ages) that have special needs or high needs. Autism, Aspergers, Speech, ADD, Allergies, Preemie babies, Downs etc etc

As a parent of a child with needs we do it hard sometimes and need a place to feel that we can share our pain and struggles in a caring environment. Not that no other thread isn't, but I felt we needed a place that we can just come and let it all out (not too much out[:D][8D]) and not feel ashamed or whatever.
So we can share treatments, advice, support, encouragement, tips etc.

So maybe just start sharing about your baby and any prayer request.



nicole6598 -> RE: Mother with children of special/high needs children support thread (8/24/2008 3:47:03 AM)

So my son Nathaniel has been diagnosed with Silent Reflux, not sure if that will stick, whether there is an allergy or something else going on there. WE have a specialist appointment in December to see a Gastroentologist. In the meantime he is having some tests done to rule out allergies.
Prayer for me for strength would be good, I basically do the child rearing on my own and have little support from my hubby (and no family is here) so that would be good. And for Nath for healing and/or that we can find out what is wrong and help him.



Homegrownkids -> RE: Mother with children of special/high needs children support thread (8/24/2008 8:03:00 AM)

Hi Nicole,

Nice to meet you!

Like you, I'm not living close to family. Dh is supportive, but I still end up doing most of the child rearing... at least it feels like that. We do have a happy marriage and 5 GREAT kids!!!

As far as my children go... Noah is 18 months old. When he was first born I mentioned his bruising in the pregnancy thread. KatMac told me about her son... at the time, I denied everything she was saying. Eventually, I came to realize that our children have the same thing! It was a blessing to run into her!!!

Noah's bruising was actually a birthmark, he was born with a Port Wine Stain birth mark. It covers most of his body. He is blessed to have it light in color, most people don't notice, or think he just has a rash, or sunburn, or wind burn. He was also born with Glaucoma which he's had 4 eye surgeries and too numerous to count eye exams under anesthesia. He also gets laser treatments under anesthesia for the b.mark. He's also had CT scans and a couple of MRI's. He is considered having something called Sturge-Weber Syndrome. He could have all KINDS of things wrong with him. Anything from seizures, strokes, to behaivoral problems. So far so good though and each day that goes by with no new symptoms we praise God.

Prayer for him ~ no new symptoms to the Syndrome. Also, that his vision would be restored in the eye that he has glaucoma in. And, that he would wear his glasses and do eye patching.... he is so notty about this. But, he's 18 months, what can I do! lol

I also have a 6 yr old that is a handful! I won't get into it, but she doesn't act like most 6 yr olds to me.



nicole6598 -> RE: Mother with children of special/high needs children support thread (8/24/2008 8:29:34 AM)

Hi nice to meet you too!!

So does the Port Wine Stain come with any other symptoms or side affects apart from the mark on the body? I don't know much about it.
I haven't heard of that syndrome that you mentioned. But Praise the Lord indeed that he doesn't have those symptoms!! Is his vision problem part of that syndrome or the stain or unrelated?

Will most definitely be praying for Noah and for you!

So what makes you think your 6 old is not acting like a 6 year old?



Homegrownkids -> RE: Mother with children of special/high needs children support thread (8/24/2008 9:45:24 AM)

Hi, yes the P.W Stain b. mark can affect other things. It is basically extra blood vessels. They can pool up around the brain and cause damage and for whatever reason, the extra blood vessels around the eye cause the eye pressure to go up/glaucoma. Luckily, Noah's brain scans have been normal and we pray that they continue to be that way. And, after 18 months of uncontrolled eye pressure, his last surgery a few months ago has gotten his pressure lower than it has ever been -- Yipee!!! You can read about him here

As for the 6 yr old. She has more energy than our whole family put together. She is pretty immature for her age. She doesn't/"can't" follow instructions. She is in her own "world" when it comes to comprehending certain "common senses". It is really hard on our family sometimes. She has not been diagnosed with anything (well, we did bring her to someone and he did say that she has ADHD and she has popcorn thoughts), we tried to use a medication, but she acts too weird with it. I probably need to try something else, but because she is home and not attending a public school, we just deal with her. She is home schooled, but the funny thing is, is she does just fine with school work.



Homegrownkids -> RE: Mother with children of special/high needs children support thread (8/24/2008 9:46:58 AM)

Will your baby grow out of this reflux stuff? Does he have trouble keeping food down?



Kath -> RE: Parents with Children of special/high needs children support thread (8/24/2008 6:57:39 PM)

Moving from Maternity to Parenting.



nicole6598 -> RE: Parents with Children of special/high needs children support thread (8/24/2008 7:19:04 PM)

Thanks Kath, I changed my OP to include all parents as I am sure there are fathers out there too who need support.

Homegrown (do you have another name LOL) I read about Noah. That's awesome that the pressure is down! How do you handle watching the needles going in at check ups and things? Nath has to have a blood test done soon and I am not looking forward to it.

Is your 6 year old the eldest or in the middle somewhere? Do you think it could be something else that the docs haven't picked up on? I know there are lots of disorders etc where the child can do great in school work but have other problems. But then again, she could just be a child who is in her own world. Has she always been this way?

They say that most babies with reflux will grow out of it by 2 years of age. Nathaniel has "silent reflux" where he doesn't throw up, but the acid and stuff just moves up and then goes back down into his belly which they say is alot more painful than normal reflux. Again, I am not too sure if that is the problem or the only problem at this stage.

Oh and Ryanne said something about the test that he is having, the hydrogen test (well i don't think he will have it until he is not feeding all night long) they did say he can have water Ryanne, but nothing else.



BlessedMamaofmany -> RE: Parents with Children of special/high needs children support thread (8/24/2008 7:37:23 PM)

I'm kind of in limbo right now. Not sure if I'm going to "belong" here or not.
My 4yo starts the eval process tomorrow...she's got signs and symptoms of ADHD for sure, and possibly Autism/Aspergers.
We'll see. Even if it turns out to be "nothing" I need help, as she is getting increasingly more difficult and my husband won't be home for nearly a year.
Sandy



uponeagleswings -> RE: Parents with Children of special/high needs children support thread (8/24/2008 7:57:04 PM)

Nicole asked me to poke my head in here since I work in early intervention (families/kids ages 0-3 with disabilities or delays). I promise not to take over the thread, but I'll try to offer suggestions if I have any.

Sandy, what specifically are you concerned about with your 4 y/o?



nicole6598 -> RE: Parents with Children of special/high needs children support thread (8/24/2008 10:00:38 PM)

Thanks Stacy for popping in!!
Sandy I will be praying for that evaluation. Is it just tomorrow or are there other ones?
can you share with us if you feel comfortable some of the things that you need help with and maybe you might get some good ideas.



nicole6598 -> RE: Parents with Children of special/high needs children support thread (8/25/2008 8:40:17 AM)

I am taking Nath to get his blood test done tomorrow (which is most of your today) so if you could pray for that please? I am very nervous, I hate needles!



Auben -> RE: Parents with Children of special/high needs children support thread (8/25/2008 9:17:16 AM)

My youngest, Luke (3) was diagnosed this year with Lennox-Gestaut Syndrome, a severe epilepsy which can rob children of their ability to learn, talk, walk, and in some cases even chew or swallow.

We started the Ketogenic Diet in June. It's a high-fat, low protein and carbohydrate diet that often has a quieting effect on seizures.

So far it seems to be working well. We're blessed that he's always had a lighter case of LGS then most and that he is responding to the diet. Medications don't work well for this kind of epilepsy.

Our prayer is that the diet can calm the seizures long enough for his brain to 'unlearn' them.



Homegrownkids -> RE: Parents with Children of special/high needs children support thread (8/25/2008 9:41:28 AM)

Nicole, I am curious to find out how the fasting went. And, how the testng went.

Usually they put Noah to sleep with a gas mask, he cries, but it's quick. Then, they do needles. But, one time he did have to have the I.V first. It was hard...I felt so bad for him. We ALL had to hold him dow. Since he had no liquids, it makes it harder for them to find the veins. They tried several times, and almost gave up. Then, as they were sliding it out, it popped into place. I'm hoping this went well for your little one today.



lucyk -> RE: Parents with Children of special/high needs children support thread (8/25/2008 4:02:17 PM)

We have a 9 week old foster baby that was born right before 33 weeks with crack cocaine in his system. So far so good, but of course we won't know for quite some time what kind of effect this will have on him long term. Right now, he's trying to roll over and has really good head control. The only thing he doesn't do that has me concerned, is smile. [:(] I am really looking forward to baby smiles!

We hope to adopt him, but won't know until at least March whether that's what the state is working towards. Right now they are all optimistic in telling us we'll get to keep him, though. He's such a good baby, not colicky or grumpy much, loves to be held (which is a great sign...a lot of times cocaine babies don't like to be touched), and seems to be very happy, just not a smiler.

Nicole: praying for your little guy today, that his test is easy!



BlessedMamaofmany -> RE: Parents with Children of special/high needs children support thread (8/25/2008 6:14:56 PM)

first part of the eval went well. Of course, Sissy was an angel [8|]
He was really nice and listened to me, and believed me when I described Sissy, even though he didn't see for himself. That was nice.



peculiar_lady2 -> RE: Parents with Children of special/high needs children support thread (8/25/2008 6:48:05 PM)


quote:

ORIGINAL: lucyk

We have a 9 week old foster baby that was born right before 33 weeks with crack cocaine in his system. So far so good, but of course we won't know for quite some time what kind of effect this will have on him long term. Right now, he's trying to roll over and has really good head control. The only thing he doesn't do that has me concerned, is smile. [:(] I am really looking forward to baby smiles!

just wanted to say, out of my five only three smiled at 9 weeks old. also our newest family addition is also 9 weeks old right now!!!! born June 25th. He smirks when he is asleep (dreaming) or when he is stretching, but really doesn't smile *at* us yet. About two weeks ago he started smiling at lights sometimes...not very often though.

Sandy...that's great...when is the second part of the eval?



nicole6598 -> RE: Parents with Children of special/high needs children support thread (8/25/2008 7:09:05 PM)

Thanks for your prayers, its early morning now so wil be going about lunch time. He slept TERRIBLY last night. I am really wondering if dairy is his problem as last night I had some cob bread and dip at a friends house and boy oh boy, he woke all night again and this morning was SCREAMING until he passed wind through his bottom a few times, then slept for an hour with me. So I will be going off no dairy again. On another board a mother was saying her son has similar problems and dairy was the problem (they didn't do the hydrogen breath test as once they started he couldn't breath through it like he was meant to anyway, he was older than Nath) it took about 6 weeks she said before she saw him really change.

Sandy- well that's good he listened to you. Isn't that the way with kids, they never do what they are supposed to do[:)] How do you feel about it all now you have that part of over?

Lucy- that must be tough. My friends mum took in a cocaine dependant baby. I don't think she smiled or anything til really late either. She was very withdrawn and was sooooooo quiet, it was strange. But with lots of love and support and comfort she is doing well now. Do you get support from any agencies with her?

Tamara- has there been much success with the diet? I will be praying for him. Would he have seizures etc often? Does he talk now?

Homegrown- poor little Noah, he's been through alot!



PrincessDonna -> RE: Parents with Children of special/high needs children support thread (8/25/2008 7:29:39 PM)

quote:

We have a 9 week old foster baby that was born right before 33 weeks with crack cocaine in his system.


Also remember that as a preemie, even without the drugs, you need to adjust his age according to his due date, not his birth date. So not smiling at the adjusted age of 1 week is not abnormal at all.



BlessedMamaofmany -> RE: Parents with Children of special/high needs children support thread (8/25/2008 9:11:06 PM)

I feel much better. I really had these terrible, irrational fears that they were going to blame me and try to take my kids away. I feel tons better seeing that they are not scary child-snatchers. [8|]
I'm glad to have things going for sure
Sandy



nicole6598 -> RE: Parents with Children of special/high needs children support thread (8/26/2008 12:13:54 AM)

I am glad you feel better now Sandy! when's the next part of the evaluation and what does it involve?

Well we are back from the blood test. He only cried a little and stopped when they took the needle out. I think I cried more[8D] Probably have the results by the end of the week for the celiac and 2 other things he tested for which I wasn't sure about. At this stage I will wait on the hydrogen breath test and just keep off dairy in the meantime.



SweetLittleErin -> RE: Parents with Children of special/high needs children support thread (8/27/2008 2:55:25 PM)

RIght now my baby is definitely high needs...though I am not the one caring for his needs. He was 12 weeks premature and is still in the NICU. Not sure how much extra care he will need when he gets home yet. Just popping in here to introduce myself and get all subscribed in.



nicole6598 -> RE: Parents with Children of special/high needs children support thread (8/27/2008 6:48:54 PM)

Hi Erin!
Update us with any prayer requests you have here or I can do it if you like too. We will be praying for you, Klay and Isaac!!


Phew.. I am tired. I had a rough night last night. He was not happy. Its only the first few days of no dairy so I am not expecting any changes right away, it was 3 weeks last time before I saw any. I am trying to work on him not feeding after 2am so that I can get the hydrogen breath test done, but no such luck last night [:)]

I was wondering what helps or helped you through those days, times when you were worn out, tired, scared etc? Maybe we can share that to encourage one another?



nicole6598 -> RE: Parents with Children of special/high needs children support thread (8/27/2008 6:50:37 PM)

BTW for anyone who is just popping in to read, don't feel that you can't post just because you don't have kids or don't have kids with needs, as long as you are supportive and encouraging your posts are welcome [:)]



myka -> RE: Parents with Children of special/high needs children support thread (8/27/2008 7:53:25 PM)

I suppose I can post something... All of my children have had "issues". I have two older kids (ds16, dd12) who had various special support services (OT,PT, SLT). DD12 went through early intervention and preschool programs for special needs(mainly speech issues) as well as continued to receive services until the end of last year at public school. My youngest had milk and soy protein intolerances, and is now just dealing with the dairy/milk issues. I'm not sure that we have found out about all her issues (she still has some bm problems), but I think we have a way to deal with the problems.

I've had lots of experience with different special children.

Sandy, I'm glad that the eval went well. Lots of times, kids don't cooperate with the evals (mine never did really cooperate).

Nicole, I think this thread is a wonderful idea (and I hope that it continues to be a place for support).



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