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RE: Parents of special needs kids - 7/21/2009 1:12:18 PM

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quote:

ORIGINAL: lusciouslips19

This thread is such a positive thing. I have wanted to do it for a long time.
I would like to thank the owner of this site who decided to relax some of the sites policies and standards.
Without it, this thread would not have been possible.

Thank you.

i am right there with Lushy and a lot of others. We can all get online and look the info up, and we have, but that is not what we need. We need to hear from other moms just to know we are not as alone as we feel.

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RE: Parents of special needs kids - 7/21/2009 1:27:02 PM

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I found that massage really helped a lot. They got one all the time, but especially at bedtime.

When we had outburst or they got into touble... I taught them lil tricks to get the frustration out. They were allowed to use a pillow to hit the bed or to hit the pillow. If they got into trouble... in about an hour or so... we would have some physical play that would help them relax, laugh and get some of that frustration out. I made sure it wasn't a reward system, but used as a means to get it all out. Or we would play band time... pots and pans.. anything that made a noise, dancing, jumping, bashing our intruments and singing... loud... whoa!

When I home schooled for a while, mr perfection... said I didn't do it right and like his other teachers. I said... well... you get used to my way and you will see how it works. Within a week, I had bubbly students. When they would get in the dumps or slumps or would be focused on other things... we did jumping jacks or stand with your arms out to your side... that's right.. no, don't you laugh! I mean it, don't you dare laugh! You're laughing! Okay buddy sixteen jumping jacks right now! Or... okay... you have to run around the block... when they came bouncing up... I said... that isn't enough... do it again. They laughed the whole way and I got more attentive students. We had a blast and in summer the um's around us would join us for summer classes!

I found that coffee could replace ritilan... how ever you spell that... the doctors told me to give a teaspoon of coffee to the younger one's that couldn't take meds.

I used lighting to help too. Before bedtimes, lights would dim for a couple hours beforehand.

I tried to keep things consistant and in a routine.

I also taught them often times like I would an adult. When I was doing the um ministry, I used um stuff, but also adult stuff and they bloomed. I had so many um's coming I couldn't allow more to come and had to turn more away each week. So frustrating! They loved being respected and treated more like an adult would be treated and man did they prove to me that was a good way to go.

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RE: Parents of special needs kids - 7/21/2009 1:30:09 PM

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quote:

ORIGINAL: DomMeinCT

I'll be moving into year eight in the fall, so let's hope so. :)

Even as I see him growing and developing and being more independent, it's sometimes tough keeping the worry in perspective about his future.

Parents worry, that's just natural. I used to worry my son would never manage to graduate high school no matter what all I did. But you know what? He's grown into the most magnificent adult. When my kids were little, I had my own business so I could arrange my schedule around them. One of the first things my son did when he got out on his own, was start his own business. I was floored at his success. I think a huge part of this is the public school system, it tends to set LD kids up to fail, and point out to parents all your child's learning deficiets. Very little is done to help you celebrate all the many ways your child shines. Looking back I realize that I was fortunate to get the chance to parent such a wonderfully unique human being.

Focus on the postivie, and as much as you can make others do that too.

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RE: Parents of special needs kids - 7/21/2009 1:39:47 PM

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That is for sure daintydimples! You have to see the individual! I found in home schooling, that I could set the pace for each one. If they excelled in something, I would use that to teach the other subjects or prove to them how smart they were that when another subject was a struggle, they knew success and were more able to handle the tougher things.

There was little tv in our world and they learned to fill the time with books or drawing and my brain damaged son became a wonderful artist. In fact, Disney was interested in his progress because he was so young and could copy anything you set before him.

My daughter was taught in summer between preschool and school and when she went to school she regressed and did what was expected of her. I had her writing like the older one's, doing some math with shampoo bottles and all sorts of things. I was sick when I saw what regular school did to her.

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RE: Parents of special needs kids - 7/21/2009 1:44:06 PM

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I have been lucky with special ed in my district. They have gone out of their way to work with me and my daughter, who has agenesis of the corpus callosum and has various issues. One of them is no concept of time and numbers. We recently did some work to change her math program, and they were very cooperative.
I think it is important to fight for your child, no matter what the issue. People who passively think they cannot influence the educational process are incorrect. As an educator, I promise, the squeaky wheel gets the grease.

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RE: Parents of special needs kids - 7/21/2009 1:55:08 PM

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Oh I so know the squeaky wheel gets the grease. My children grew up in the Chicago public school system. I initiated a parent group that went to Springfield and brought advocates back to the Chgo so we (the parents) could be in charge of how the school was handling our children. But as people who have been thought this know, you can have the best plan set down, but it is up to the teacher to implement it. Some do a great job; others do not.

I'm not trying to down teachers here. An ex-teacher was my son's tutor (don't try to do this yourself) and was literrally a blessing.

Also bear in mind, I was doing this 20 years ago. I can hope things have improved since then.

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RE: Parents of special needs kids - 7/21/2009 2:22:20 PM

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No problems at all in getting support for my little one in school, but the challenge has been in getting him the correct support and programs. I've found that the school system is comfortable offering services to kids with issues they're familiar with: ADHD, autism (along the entire spectrum), but my child doesn't fit those diagnoses, and I'm having to get the school to think out of the box for what my kid needs. Best advocate I've found so far is to hire an independent source at the state university (who is also used by the school system for other kids when they need an expert) to test my child and make yearly recommendations to the school for classroom placement/teacher/interventions/behavior program/etc. On my dime, of course.

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RE: Parents of special needs kids - 7/21/2009 3:10:47 PM

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Folks, teachers who do not follow IEPS are doing something illegal. The teacher, the school and the entire district can be held accountable. It is often hard to prove but it is worth it to be the squeaky wheel and advocate for your child. Make sure you have all your ducks in a row and hold the educators accountable.

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RE: Parents of special needs kids - 7/21/2009 3:17:11 PM

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quote:

ORIGINAL: daintydimples

Great thread idea!

For holly: I have been through this with my son who has grown into a wonderfully competent 27 year old. The best advice I can give is, do not be daunted by the "professionals." You are his mother, so you DO know him best. First have him evaluated by the best you can find. Once you have some idea what is going on, start researching so you can hold your own with said professionals.

Do not overlook the importance of diet. Does he consume too much sugar (juice has sugar, it's doesn't have to be candy or sodas)? I personally would be very hesitant to medicate a child that age. There is a great deal you can do to modify his behavior w/o meds.

thank you DaintyDimples. We are so lucky to live fairly close to Pittsburgh and they have awesome hospitals. And while his diet is not totally sugar free i am blessed that he loves his veggies.

It sounds like you did an awesome job with your son!!

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RE: Parents of special needs kids - 7/21/2009 3:26:18 PM

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You cannot hold educators accountable if 1) parents do not tell the school their child has a problem, 2) parents don't tell their school their child has an IEP, 3) parents refuse to sign IEPs for support program or services, 4) the school is unable to provide the services that is needed for the child.

However should a school not be able to provide service. The school is therefore responsible to find a placement where the child can go to be provided services. Many parents do not wish to put their child in a school for special needs for fear of labeling. Also, in order for dx to be given there must be a primary care physician preferably a psychiatrist who has given the mental health dx. Most Child Study Teams to not test for m/h or ed problems- they can make recommendations but those recommendations must be follow through. It has to come from a medical doctor or psychiatrist- which means the parent has to be proactive and make sure their child receives treatment.

I am sorry to hear that some children are not getting the support that they need and parents are paying out of pocket. But once again, should the school be unable to provide service that is placed in the child's IEP then other placement should be made in which the school district must pay for. However it is hard to make these kinds of decisions when parents want the best for their child and does not want their child labeled.

Most of the parents here sound like they are being proactive and that is a breath of fresh air.

< Message edited by GoddessOrchid -- 7/21/2009 3:29:17 PM >

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RE: Parents of special needs kids - 7/21/2009 3:39:13 PM

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"Most of the parents here sound like they are being proactive and that is a breath of fresh air."

You bet it is! I cannot tell you how many IEP meetings I have been to where the parents don't even show up. Its sad, really.

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RE: Parents of special needs kids - 7/21/2009 3:51:43 PM

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quote:

ORIGINAL: sirsholly

quote:

ORIGINAL: DerangedUnit

i just had a baby sister born last week that has down syndrome and my mom had cancer during the pregnancy so both her ovaries had to be removed and im on the other side of the country so i cant help her out at all guess this is some fucked up karma or something

the cancer was found and treated, so hopefully your mom is going to be fine. I know it must be so difficult to be so far away when you need to be together as a family. Your heart is there, and i am sure your mom knows that.

But *said gently* we are moms and families dealing with special needs children and we love them with every cell in our bodies. "Fucked up karma" is not appropriate in reference to them.

Holly - I'm thinking Deranged's karma reference was in respect to her own situation and not special needs children.

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RE: Parents of special needs kids - 7/21/2009 4:11:53 PM

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While I am not a mother, I am a teacher, and I deal with UM’s day in and day out. I think many times the anger comes in when they get frustrated, so I try and help them avoid feeling frustrated by planning ahead. I realize that some of you have little UM’s so a daily planner won’t help--yet-- but that is the single most effective tool that a student can use… as long as they really use it!

I teach at a different type of school, and one thing that the ESE department is big on is self-reliance. The parents don’t get in trouble if the UMs don’t do what they need to do, the teachers don’t get in trouble… the UMs are held responsible. Now, that may seem harsh to some of you, but it really works in our situation. (But we also have two or three different ways we contact the parents each week to let them know what is going on… so it’s a little different than the traditional schools.)

One way to really make sure the student is writing down what they need to do is to have the teacher sign it after every class. I do this for many students---however, it’s THEIR responsibility to bring it to me to sign. Not the other way around. I know for one student, that if he got all of his teachers to sign it every day for a full week then he got to rent a DVD of his choice on the weekend. It seemed to work well for him.

Here are some other things that I recommend, and seem to have worked for some of my students in the past:

Take pictures of what you want things to look like. If you want your UM to clean his room, have pictures handy of what it SHOULD look like when it’s done. A lot of times standing in the doorway, looking into a messy room is overwhelming. Use a digital camera and take snapshots of what the top of the desk should look like, what the floor should look like, etc. This helps with UMs of any age. I think this could be a really fun activity, taking pictures with your UM to help them out… and it doesn’t have to be just for their messy room. Take some pictures of them washing their face, and brushing their teeth and such and leave it in a binder in the bathroom for them to use….that way when it is bedtime they can flip to the “BEDTIME” section in the binder and step by step get themselves ready. And you don’t have to use words at all… a little sticker of a bed, or a moon, or a star or something could be the symbol for bedtime. You could have another section for "Going to school" and another for "Going out" and yet another for "Cleaning the bathroom".

I have many students that are diagnosed ADHD…some are on medication, some are not. The one thing that I have noticed with UMs that are NOT on meds is that their diet SEEMS to effect them the most. I had one student in particular -- he had my class after lunch and I could tell EVERYTIME that he had refined sugar. His parents tried the natural approach by changing his diet, but he would sneak candy and sugars from other kids and I could tell every time.

I was watching something recently that said that dyes in food can make boys more hyperactive. I don’t know how true that is…?

Also, I was a nanny at one point in college…and the UM was a boy about 7... He had some sort of reaction to milk and dairy…every SINGLE time his parents would give him ice cream the child would have a melt down.

~

Regarding IEP’s… In one way I think they are a wonderful thing, in others not so much. My big thing is getting stuff turned in on time-and a lot of times kids cannot. I fully recognize that it is much harder for some children to get their stuff done on time, and that is why they have extra time on their IEP.

Here is where my problem comes in. If I have an assignment due on Monday, and the child has 3 extra days to complete it…then by Thursday it has to be in. The issue is that I have other things due on Tuesday, Wednesday and Thursday. If they get behind on ONE thing, it makes it SO much harder to keep on track with everything else.

I think IEP’s are a wonderful thing because it helps the child in many, many classrooms. I do not agree with the extra time allowance, because I don’t think it really helps them. In the short term, it does help their grades…but in the long term-- life will not give them extra time on most things.

In regard to parents not showing up for IEP meetings... I'm not sure if the laws are different here, but I am pretty sure that the school can meet without the parent being there. I've been to a few where the parents never showed.

To end, I know of at least two individuals at my school that were diagnosed with ADD or ADHD as children and grew up to be professionals in education. They are two of the most caring, understanding people and they are advocates for children with these types of disorders.

SO…. Don’t give up hope.

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RE: Parents of special needs kids - 7/21/2009 4:24:27 PM

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Mine didn't react to sugar, though they didn't get much, but give them a hot dog or preservitives and we'd be flying high for about twenty four hours.

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RE: Parents of special needs kids - 7/21/2009 7:23:54 PM

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quote:

ORIGINAL: sirsholly

I so hope this thread stays up. My three yr olds Doctor wants him to be evaluated for ADHD. The level of hyperactivity is something i can handle, but the danger...a threat to himself and/or others is now the issue. He will not...WILL NOT...listen to us if he has a focus/goal, dispite the danger. If his goal is running across a busy parking lot, my voice will not stop him...he has to be physically restrained. The kid moved at the speed of light and will take off with no hint of his plans. He has caught me off guard time and time again (and please guys...if you ever see a kid on a leash..wristband connected to wristband...think of this situation before you criticize? A leash is on my shopping list, as holding his hand is not always possible. I actually fear breaking his hand/wrist. THat is how hard he fights me).

He is very violent with his dad and i. Yesterday was a good example. He pulled all the vidios off the shelf dispite being told over and over he is not to touch them. Ok...so i told him he will not go outside to play until they are put back. He said they are too heavy . Then he announced he did not want to. I told him he did not have to, but he would not go outside. The next thing i know a very heavy antique Maple chair is flying towards me. This is typical. His level of frustration (i do not think it is anger) is so sudden and intense and violent.
The voilence is just here...he is a very passive child at school and his teacher was shocked when i said we are to have an ADHD eval.

Please...any help?

ETA...unless it is absolutely imperative and suggested by a second opinion (and a third) we are adamant that a three year old should not be given Ritalin, Aderrall and/or whatever new ones are out there.

I went back to reread some things. First, many of us would understand the leash. My son was on one when we went to festivals. Imagine losing a child among a sea of people. My son would think nothing of running away laughing at 3. Imagine your kid running away at Target laughing. He knows hes not gonna get it in front of people. he did learn he would get it im the car though!

Kids should not be on ritalin or Aderall so young. But there are other meds if needed that may focus on the behavioral issues. My son was on Straterra. But i think he was 4 or 5. I think the concerta came at the age of 5 or 6.

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RE: Parents of special needs kids - 7/21/2009 7:33:47 PM

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My brother didn't need medications until he reached puberty. I suppose we were fortunate that way.

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RE: Parents of special needs kids - 7/21/2009 7:51:08 PM

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As a person who has chosen not to breed, I will say: Leashes on toddlers or (any kid who needs one) are a good thing to me - much better than a crying kid with wet pants waiting by the service desk at Target. Choosing medication is scary, but sometimes, some kids, really benefit and are happier - being able to have an artificial control on emotional states sometimes gives people the time to learn coping and social skills to be able to live off the medication. I support you either way. In fact, I will stand behind you all the way as you fight like hell for your kid - your brother, sister, parent - because I see too many people around me who had kids like buying a pair of expensive shoes, just another accessory, and THOSE are the ones who piss me off. The rest of the parents who try their best, make mistakes, keep trying, and love fiercely - THOSE parents earn my total respect.

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RE: Parents of special needs kids - 7/21/2009 8:11:22 PM

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quote:

ORIGINAL: Racquelle

As a person who has chosen not to breed, I will say: Leashes on toddlers or (any kid who needs one) are a good thing to me - much better than a crying kid with wet pants waiting by the service desk at Target. Choosing medication is scary, but sometimes, some kids, really benefit and are happier - being able to have an artificial control on emotional states sometimes gives people the time to learn coping and social skills to be able to live off the medication. I support you either way. In fact, I will stand behind you all the way as you fight like hell for your kid - your brother, sister, parent - because I see too many people around me who had kids like buying a pair of expensive shoes, just another accessory, and THOSE are the ones who piss me off. The rest of the parents who try their best, make mistakes, keep trying, and love fiercely - THOSE parents earn my total respect.

I have seen parents at school who refuse to see a problem and get an IEP. When my son was in a diagnostic kindergarten class (before being put in regular classes). he was quickly mainstreamed for reading and math. He had an aide from the class go with him to help him while there. A boy in the class ended up utilizing the extra help more than my son. Too bad his parents wanted to keep blind to his special needs.

< Message edited by lusciouslips19 -- 7/21/2009 8:12:08 PM >

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RE: Parents of special needs kids - 7/21/2009 8:18:21 PM

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hello all you wonderful moms! i am in the same boat as many of you. I am the mom to four special needs boys, one biologically mine, the other three are drug exposed transracial adoptees. the oldest will be 18 in september, he was born weighing 2 pounds 13 ounces at 7 months gestation. he has cerebral palsy, is mentally challenged, has a host of neurological problems tied in with the cp, is almost legally blind, has scoliosis, has a blood disorder that is life threatening when it flares and had seizures for many years. he has the mentality of about a four year old, but in his adjusted classes he has a better gpa than mine, lol! number two is almost 15, has adhd and aspergers. he is very intelligent but socially he has problems that he's in therapy to deal with. his fixation is sports and this summer he's playing football with a city league. believe it or not, with me being in the wheelchair and unable to get into the basement, he does all the laundry! his charter school principal told me he was the smartest kid in his school and they'd love to have ten more. number three is 12, he was born positive tox for cocaine and went through withdrawals. i got him straight from the hospital at the age of 9 days and went through the tremors and all that with him. he is very intelligent but has severe odd. he was the one i had in residential treatment for a few months. he's doing slightly better, so i have a glimmer of hope for him. he may have some cognitive delays as he does not do well academically, but he has potential if we can get him in the right setting. number four is 11, he was cocaine exposed in utero and born about a month early to an incarcerated mother. i adopted him at the age of two. he's always been emotionally delayed and had difficulty with letters and numbers, he has difficulty recognizing and has dyslexia to boot. he also has odd, but not as bad as number 3. both of the younger boys are in day treatment this summer and will need special placement for school as the school associated with their therapy is closing. none of my boys take any meds currently, which is sometimes a good thing and sometimes not.

i have dealt with three year olds who have refused to sleep, had violent melt downs and were so hyper the doctor spent a half hour with him and handed me a script without a fight. i have dealt with seizures, athsma attacks, multiple surgeries, transfusions, schools that refused to cooperate, special eqiupment, cruelty from outsiders, you name it, i've been there with all of you. yes i leashed my boys! when they were too big for that i'd dress them all the same when we'd go to places like the zoo or the fair, then i could point to one kid and say "he's wearing that outfitand looks like....." if anyone got seperated. we've done the expected behavior speeches, the routines, you name it. it's been hell, but worth every second! they are my life.

thanks to the powers that be for giving us this place to vent and support each other. love to all of you and your families!

PM

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RE: Parents of special needs kids - 7/21/2009 8:51:17 PM

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quote:

ORIGINAL: intenze
I cannot tell you how many IEP meetings I have been to where the parents don't even show up. Its sad, really.

Darn, ours IEP meetings are long and detailed. Get is in writing and make it as measurable as possible.

It's great reading about how the future has turned out well for others' kids. Thank you.

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