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RE: Parents of special needs kids - 7/21/2009 9:21:38 AM

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When he was younger, we started using different techniques to get him to relax. We count backwards from 100, stopping to take deep breaths at 90, 80, 70, etc. Blowing bubbles is another tool we use to disrupt the outburst. We also play alphabet games, such as Name an animal that starts with the letter A, then B, etc., and sing songs... even nursery rhyme songs.

By outburst, I mean he would scream or shriek, pinch, scratch, kick, bite, or head butt. Keep in mind that he's limited in his verbal capabilities, and is not able to express what upsets him at a particular moment. He functions about the level of a 5 y.o in most aspects.

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RE: Parents of special needs kids - 7/21/2009 9:22:15 AM

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I'm not a mom anymore, or as the state put it "assistant caregiver" or some such. I used to live with a lesbian couple who were foster mom to three little boys. The oldest had, RAD, ADD, and a host of other diagnosies. So while I cant offer to many happy ancedotes, or a lot of advice, I can always be here for hugs and well wishes :D

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RE: Parents of special needs kids - 7/21/2009 9:55:28 AM

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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.

I'm sure one of your largest worries is that he can be such a danger to himself. Monitoring that is just exhausting, I know. One of the best things you can do is use his skills to help him control himself. For instance, I had my son draw a map of his neighborhood (he's a wonderful artist) so he and I would be clear about what his physical boundaries were. (My son was about ten years old then. With a three year old, there is not much you can do other than watch him like a hawk).

Children with learning disabilities tend to be highly creative, they are the artists among us. Their brains really do operate differently, and this is a blessing, not a curse. But from a parental point of view, the first seven years or so are very labor intensive.

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RE: Parents of special needs kids - 7/21/2009 9:55:33 AM

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Sometimes we dont need advice. We just need a place to go

.\
The hardest for me is having to as my son puts it, be "bossy". I mean my son would walk around with his fly unzipped, his shirt inside out and backwards and not even have a concern. On the way out of the house, I have to tell him to close the door behind him as if I dont it will be left open. So becuase of the,"do this, now do that, now do that". I just want to go

. Because I cant get him to think about things or notice things. I am happy to say after many years of reminders, my son finally puts his dish in the sink without being reminded at least half the time.

< Message edited by lusciouslips19 -- 7/21/2009 9:57:49 AM >

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RE: Parents of special needs kids - 7/21/2009 10:07:23 AM

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quote:

ORIGINAL: lusciouslips19

One thing I do want to state, although my child has Aspergers syndrome and he is not Neurotypical, he has talents beyond compare. Aspies tend to fixate on topics of passion and they become very learned if not a bit odd.But very productive in many areas. There are quite a few writers with Aspergers and my son recently won an essay contest so that is a talent of his as well.

Always find your childs talents and skills. They do need something to be proud of. My son knows hes smart, funny and a good writer. He has been fortunate to have teachers that although he would have some outbursts with his behavior, they recognized how special and insightful and talented he was. Show you're children their strengths.

Lushy, mine can shoot like the devil. He took hunter's education and was the best shot in his class, especially since he'd never held a rifle before. His fixations are hunting and fishing - that guy can tell you exactly what type of game or fish is in an area, how to catch them, what type of equipment to use, you name it. He's also one helluva hockey player and is on a team in California, right at the home of the San Jose Sharks. (It's not a special team, but regular.) He gets right out there and does a fantastic job, he's playing right wing in the upcoming season. He jokes that he will never be a great "brain" but he is kind, loving and incredible. Ok, so maybe I'm a little on the biased side....

But he knows his strengths and works with them. He's very hands on.

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RE: Parents of special needs kids - 7/21/2009 10:07:50 AM

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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

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RE: Parents of special needs kids - 7/21/2009 10:14:07 AM

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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.

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RE: Parents of special needs kids - 7/21/2009 10:14:53 AM

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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

I can offer you (((hugs)))

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RE: Parents of special needs kids - 7/21/2009 10:16:14 AM

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(mail, btw, holly)

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RE: Parents of special needs kids - 7/21/2009 11:31:43 AM

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I think it's important to keep the focus of this thread on issues relating to our special needs loved ones. I can't speak for anyone else but I know that I went through a lot of soul-searching and negative emotions, wondering if there was something I had done wrong, something, anything I could have done differently. In retrospect, I know there's not, I did everything possible and had the healthiest pregnancy of my 3.

A tip I used with Monster #3 was to plan our outings carefully, not over-scheduling since too stimulation would cause melt downs. So instead of running multiple errands when he was with me, I would break it down to just one or two, depending on how he was doing.

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Or is this the beginning of the end?"
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RE: Parents of special needs kids - 7/21/2009 11:43:11 AM

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quote:

ORIGINAL: daintydimples
But from a parental point of view, the first seven years or so are very labor intensive.

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.

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RE: Parents of special needs kids - 7/21/2009 11:56:45 AM

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Another tip is before you go into anywhere with your child. Let him know why you are there and what you are doing? I Ask mine "what type of behavior do I expect?" He says "good behavior" and then I say, "what does that mean?" SO he was always prepared as to what the expectations are and what will happen if his disobeys.

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RE: Parents of special needs kids - 7/21/2009 12:01:02 PM

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We do that "prep" discussion every morning before school or day camp. He's on a behavior plan and he has to chart how he did during the major steps throughout the day (group time, activities, lunch, etc.) The best part is that no one is micromanaging him - he has to rate how he did (although when he doesn't act appropriately, he's learned to occasionally leave it blank - HAH) and then we discuss it with his teacher and/or at home with him. This doesn't avoid all the problems, but it helps him keep himself on track during that long day.

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The meeting of two personalities is like the contact of two chemical substances:
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RE: Parents of special needs kids - 7/21/2009 12:07:39 PM

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I read most of the writings and wanted to put my two cents in if I may. ADHD can be painful for the one with the diagnoses because they know something is going on but they cannot stop it. Other times you have young people who make excuses for their behavior because of being labled ADHD. There are a lot of misdiagnosed young people out there. So it is always good to get second and third opinions. Children with ADHD respond well with medication (they now have a patch for ADHD), set limits and boundaries (that must be consistent), talk therapy, and groups. You may want to look into Lifespace Interviewing Techniques which are used to de-esculate before the child becomes overly aggressive. And can be used even if the child has an outburst. I have found that often parents not all take their child off their medications or see-saw their children on meds. It takes up to 6 weeks for medication to get into their system. Taking the child on and off medication because the child "seems" better or seem to have a side effect can cause resistance. And can be very disruptive to the child who is feeling great and suddenly plummets into a episode.

Children with aspergers need strict limits, independence, and a quick intervention when they become upset.

Also if children has violent tendencies a lot of times it isn't simply ADHD it could be a sign of depression. Many adolescents become very agitated when they feel no one understands them and so they act out. I knew one adolescent who had been depressed for 2 years and he decided to attempt suicide because he couldn't take the pain inside of him. He has a diagnoses of ADHD but when hospitalized was diagnosed with clinical depression.

Bipolar disorder is usually not diagnosed in children because it is not usuall considered a child psychiatric disorder. It is mainly for adults. Or it is BPD and the child is simply misdiagnosed.

It is important to educate yourselves and know your rights regarding your childs mental health even while their in school. Usually schools will not want to evaluate a young child, but push if you need too. It could really give ur child the services they need.

Good luck!

< Message edited by GoddessOrchid -- 7/21/2009 12:10:08 PM >

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RE: Parents of special needs kids - 7/21/2009 12:09:55 PM

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Master and I have two UM's at home, both of whom are special needs.

Our daughter has behavior issues that appear to stem from lead poisoning when she was 2-3 years old. She has little, or no empathy for those around her. We're trying to 'retrain' her to remember there are others in the world apart from her and they don't exist solely to provide entertainment for her.

Our son is autistic, high functioning. With school out it's been a royal nightmare. His ability to function around others has dropped, drastically, though the computer at the library has helped there. Because of the built in timer he accepts that he can only have thirty minutes at a time playing the games so, we're looking for a similar program to put on the computer we let them use at the office.

Both UM's are very bright but our daughter refuses to use it, and will delibaretly not pay attention to her class work, or anything else, unless she wants to do it. Our son doesn't do well outside of routines, and out of school those routines aren't as easy to keep in place.

It takes everything I can to remain calm at times, especially when she's pushing to get her brother into trouble.

muse

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RE: Parents of special needs kids - 7/21/2009 12:13:30 PM

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I really feel for all of you struggling with all you have going on. I do want to say... I am living proof that you and they can survive it. For those days when you don't feel you can take one more moment, do keep in mind there comes a day when you know you got through it and can give yourself a pat on the back and say whew what a ride, but we survived!

From birth my one son was dying. It took months to figure out why. He was born with an ear infection and had constant problems. So when he was three months old and all over the house when he shouldn't have been able to roll over intentionally... whoa, I knew something was up! It took another four years to figure some of that out. I used to sit and watch him, exhusted and almost numb, wondering when he would fall down in exhustion. I got locked in rooms, had to find a way out and over fences, jumping in pools and hoping he would let me back in. Till I found ways to make sure he couldn't do that again. We doubled um gates, we locked all things and tried to keep him from hurting himself... that led to a few nights sleeping on the floor in front of his door so that he couldn't get out without me knowing it. They blamed his hearing loss for his acting out. I knew nothing about any of it or hyperactivity.

At four he stood in front of me jumping up and down, lil cheeks rattling and saying... I want... to... stop... but I.. can't. Finally they figured out it wasn't hearing loss and was hyperactivity and they sent us to a doctor who had been treating hyperactivity for 26 years. My son blew that doctor away! He had never seen a kid so hyper. I learned all the stats... how many ended up violent and in jail... the lifetime devistation. I was determined to save my son.

Now, I used methods many would consider wrong. In fact, I considered them wrong at times and had a lot to deal with, but I knew what was working and the only thing that worked. I will never forget going to the doctor and counseler and wanting to report myself because I had been too physical with him because it was the only thing that stopped him. I remember coming out bruised and wounded many times trying to hold him down from killing himself by bashing his head into the wall. He was physical and I had to be. I wanted help and couldn't find it. I couldn't deal with the physical aspects and felt abusive.

So I go to report myself and they say... no... you didn't abuse him, you are the best parent we have here. God damn... now what? Don't they see this is out of hand? If I am as I am.. how bad is it for others and what are those poor um's living with???!!!

I was directing the shelter and some of the ladies were standing with me in front while the um's played in the fenced yard. I was wearing my director wear... meaning a dress. My son decided he was the best quarterback and tackler in the world and proved it to another... I told him no... stop that, don't do that, you could break his neck... did he stop? No! Our shelter was right across the street from social services and all the ladies I worked with sometimes on a daily basis. They could see the yard and all that went on there.

Director... mom of mr hyperactive... in a dress, jumped that fence, ran and tackled and took down her beloved, but unmanagable son. The women gasped... I knew I could get into big trouble, but he wouldn't stop and he was dangerous. He didn't learn unless he knew exactly what it felt like and would do something until he knew the pain of what he was doing to others. He never did that again.

He grew up... no police... no arrest... no school problems... the only drawback was that he felt he had to be too good... but that verses mean and in trouble... I would accept. He was youth minister, responsible a bit ocd but is married and a daddy and joining the military and shipped off in Oct. He made it... but so did I.

The other two were learning disabled and a whole different story. But the doctor could not believe there were three in one family. Neither could I! lol

My methods were extreme and I often questioned them... but I knew I had to do it. I don't regret it.

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RE: Parents of special needs kids - 7/21/2009 12:26:55 PM

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Donna.....I Love you!

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RE: Parents of special needs kids - 7/21/2009 12:29:23 PM

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Lockit, thank you for sharing details that some of us are reluctant to admit to.

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RE: Parents of special needs kids - 7/21/2009 12:32:48 PM

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Thank you... the thing is... we get trapped in the guilt, the shame.. the frustration and don't talk about it! No one can handle all that without losing it at some point. I think with those I have had contact with, the talking about it helps and admitting or confessing or even just facing it aloud can help you balance it. We are our own hardest critic.

Hugs!

Oh... and my son... the rocket... thanked me for raising him as I did.

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RE: Parents of special needs kids - 7/21/2009 12:39:10 PM

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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.

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(in reply to Lockit)

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