I can't keep going like this HELP ME

Virginia - posted on 07/27/2010 ( 44 moms have responded )

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Today my multiply handicapped 6 year old son was supposed to have his first non-cleft related dental visit...

We get to the dentist, I sign Zachary in, then I realize someone pooped, I look at Zach and it's all over the front of his shorts and shirt, oozing out of his diaper! UGH!!! Okay, not his fault, we'll just reschedule. Then he has a major meltdown and kicks and hits and headbutts all the way until AFTER I get him buckled in the car. where he throws his head back so hard, I heard the thump and it was LOUD. He screams bloody murder. All of this while still carrying Ryan as well. and might I add the receptionist was a BI***. Who thinks it's okay to give a disabled child and his mother dirty looks like that?! I need to hit something.



Maybe I'll hit the pediatrician who says, we will just wait another year to evaluate his behavior again. Because there's no way he has Autism, or ADD or ADHD. Possibly OCD but we'll wait a year to find out...

Or Maybe I'll hit the Neurologist who just does NOT want to change his epilepsy medication. Yeah, he's seizure free 90% of the time, but he's a DANGER TO HIMSELF AND OTHERS 90% of the time as well!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!





I can't go on much longer this way, I just can't do it. He's now teaching Ryan it's okay to act out and get aggressive and violent.



I called st louis hospital first thing after we got home only to find out that the phsyc dept is the only dept in the hospital that doesn't accept our insurance!!!

So then I called his pediatrician again, this time, Zach is STILL acting up while I"m on the phone, the referral girl hears him and asks if that was him screaming in the back, I said yes and just started bawling my eyes out. I don't like to be embarrassed, especially of my own child, so I felt even worse.

She got us an appointment tomorrow which will be when they refer us to a child phsyc in Mt Vernon, a long drive, but only about half as far as St. Louis I think. She said it would be several months before they have an opening.

She then proceeded to tell me I should probably have him hospitalized!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ARE YOU SERIOUS?! I'm asking you to HELP my BABY not lock him up!!!!!!!!!!!!



Help his problems, don't hide my child away!



So I called my older sister and she offers to help me. She said I need to clean my home spotless and alphabetize everything and set up tons of routines and he would be a perfect child in a matter of months. She also told me I shouldn't yell at my kids, I shouldn't spank them either. I think the only things she said was okay was time out(which I cant do with him because he will hurt himself) and taking his toys and games away, which when I try that, he gets mad and hurts himself or his baby brother. She kept saying she wasn't trying to make me feel bad, but everything she said made me feel like she was calling me a terrible mother.



I just need some guidance, some advice, some encouragement, and some answers



:(

MOST HELPFUL POSTS

Stephanie - posted on 07/28/2010

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I know someone like your sister . . . it is easier not to speak to her at all as she gives me the same advice about my twin autistic sons. Although they are almost 5, one will not be going to school for a long time and the other starts the week after his birthday. Currently I have a suspected cracked rib from a kick and multiple bruises from a temper tantrum at the local sports ground . . . I get reported to the authorities for forcibly restraining my boys, but I have no other choice. I can recommend chocolate and bourbon for the bad days and lots of smiles and encouragement for the good days. To people who look down on me like I am incapable of dealing with the outbursts, I smile sweetly and ask :"want to help?" to those with unwanted advice "please feel free to come and set these up - you are welcome any time" and its amazing how many people wll either shut up and go away, or get embarrassed and then try and help in some small way! For the experts . . . who charge so much and are impossible to get appointments with - buy a punching bag and go for it! Nothing else seems to help :)



Try and be positive - there is always one small step in the right direction if you look hard enough (although some days I need a microscope to see it).

Barbara Ann - posted on 07/30/2010

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One word of advice.... Document, Document, Document. I wish I had done that from the time we adopted our daughter. I wish I could tell you that it is all going to get better, but it doesn't.. Not until your child is properly diagnosed. For your sake and anyone else's whose child is suffering from these sorts of mental conditions... DO NOT STOP seeking out the answers. Do not let someone tell you, you are the ultimate problem... it is not you. You and your son are being failed due to misguided information, whether it be from your sister (who I will say, has no idea what in hell she is talking about) to your pediatrician, that does not want to get his hands dirty, and even your friends. I will tell you that you do need to contact a "pediatric" psychiatrist! They will evaluate your child. You should not have a difficult time finding a child psychologist to further evaluate your son for any additional mental illness. It is difficult to diagnose mental illnesses in children until school age because the "terrible two's" can last until a child is 3-5 years old. Do not plan on getting help from the public school ESE department either. In my case, my husband lied to the supposed "behavioral psychologist" which actually turned out to be a social worker for the school board and said that our daughter ONLY displayed these behaviors with me. I am currently in the middle of a high-conflict divorce fighting for my own survival and my daughters life and future. I was too afraid to go to any sort of support group because my soon-to-be ex-husband has undermined every aspect of treatment necessary for our daughters mental health and wellbeing. He has gone so far as to tell our daughter that I will be in heaven by the time she grows up. I promise you, everything inside you will be pushed to the brink of snapping, but you need to hold on. Find your support system, even if it is a bunch of strangers on Circle of Mom's, because you are going to need it! If you notice anyone undermining your efforts to help your child; you remove them from your life and theirs. Opinions from the cheap seats are just that... cheap and useless! Follow your instincts, they are usually right! Good luck!

Staci - posted on 07/29/2010

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You are a great mother. Every day that you wake up and do whatever it takes to make life better for your children is affirmation that you are a real mom. Raising a child with special needs can sometimes be overwhelming, especially when it seems that everyone in a position to help seems to be dragging their feet. What is important is that you remain calm, get organized and take life one minute at a time if necessary until you get what you need. It is also helpful to join forums or groups such as this one where you can connect with other parents who have traveled the road you are on now. They can give you advice and information that is specific to you needs that will be invaluable.

Take your sister's words with a grain of salt. She is on the outside looking in and doesn't know what it really means to walk in your shoes. Accept whatever help she is willing to give because it takes some of the pressure off of you. She is right there are alternatives to yelling and spanking that children will respond to but you have to find out which is most effective for your children. Time out doesn't work for every child. The most important thing is that you continue to knock on doors until you get the help that your son needs. And don't be afraid or ashamed if he needs to be hospitalized. Sometimes we have to go to great lengths to get what we need and it doesn't mean that he is any less of a person or that you are any less of a person for going that route. It means that you are a great mom and you are willing to go to the ends of the earth to make sure that your babies are okay. Don't worry about what people say. You aren't here to live life for other people. Your calling is to be an awesome mother to the children you have been blessed with and that is most important. Motherhood is not about perfection. All that is required is your presence and willingness to do the job with your whole heart. Accepting that every day won't be perfect and thanking God for the days that are. Because as special needs parents we know that sometimes it takes along time to get to one.

Breathe, take life one moment a time, ask for help when you need it and life will even out soon. I wish you the very best.

Jennifer - posted on 08/14/2010

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Your sister has the right intentions but has no idea what you are really going through. Don't get mad at her, or the doctors or assistants- ignore all of that. Keep pushing to see psychiatrist that you like, keep pushing till your son is diagnosed and medicated so that he is happier, relaxed, able to live a less-anxious life. You have to be very patient, ignore anything you hear that doesn't work for you, and keep looking for someone that understands you and your son. Keep a sense of humor- you will be ok. Your family will be ok. Take a deep breath and be patient and loving to your son- he can't help how he feels and acts. I know it's very hard, but tell yourself you are a patient mom, you laugh when you want to cry, and you keep searching for the best professionals to help you. You are strong! You will find answers and you will get past this. Please write any time; I have been through all you have.

RaNaye - posted on 08/14/2010

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When my son went to the birth to 3 program, (I know your son is older than that.) They had be strip him down and use a soft corn brush on him and brush his arms, feet, legs, hands and back, then starting at his toes and ending with his neck do gentle joint compressions to a ten count. He had no body awareness and after awhile, he did get body awareness. It didn't stop tantrums but what we did find out was that pressure calmed him so we got a weighted blanket which we put on him when he would escalate. He is 17 now and bigger than me but he still believes I can take him if I have to and I believe that because I can't allow myself to believe any different. That and we taught him all through the years that he can't hit girls. He is in High School and has core meltdowns (we're hoping for none this year), but they found that a heavy bag and letting him go to town on it when he is escalating is best. In his case, the fewer words the better as he loses comprehension when he escalates. He beats up the heavy bag and has hit a wall or two but he is threatening people less and less. He is seeing a counselor now which is helping some. They also found out at school that physical activity for him is extremely helpful. His teacher who is also the football coach started him doing push ups in the event in life that a heavy bag isn't available. He started it out as a competition among the students and my son last count was doing 80 push ups in a shot. The others gave up. Find out what gives his body a calming sensory experience. My son has outgrown the weighted blanket and uses bean bag chairs. When he was 3 years old he would lie between two of them and I would lay on top. He needed that much sensory pressure to connect with his body. As he has gotten older he's needed less like that. Now he lays down himself and puts one on top if he needs that to calm. He no longer needs my body weight. He's learned the push ups and heavy bag help and he has also taken up cross country running and runs for Special Olympics. He has a part time job at a grocery store where they aren't giving him enough hours but when he works, he is one of the hardest workers they have and he enjoys doing the heavy work. I am telling you this to let you know there is hope. I used to have my boys tethered to me when I went anywhere as one would run one direction and the other the opposite and I couldn't get them in the cart fast enough. I took a plunger handle to the eye, a channel changer to the face, his impulse control was terrible. He doesn't have seizures but he does have tics and the fact that your medical community has wanted to continue to wait, shame on them! There is plenty of data out there to support the diagnosis and treatment works best when started as early as possible. I wish I could be of some help. I was told that I was being abusive at times with my kids but the people that tell a parent that in our situation don't deal with the kind of abuse we take on a day to day basis. I have 3 kids and my daughter, the oldest would have such violent outbursts she wouldn't breathe. The only way I could get her to stop throwing things at me and hitting was to put her clothes and all into a cold shower. That would get her to take a deep breath and come back to herself and then it would be over. I was called abusive for that! (She wasn't the only one getting wet in the shower!) Many of the professionals don't have a clue. When you find one like that just tell them you don't have time for their ignorance and would like to be referred to someone with some specific knowledge of your child's disability! I don't mean to rant, it just brings back memories. As for people that stare, a doctor I know with a disabled son told me he told a man staring, "He's got a disability that damaged his brain, what's your excuse?" The guy stopped looking and went away!

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Kitty. - posted on 09/11/2010

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Well, I don't know much medically but I do know that alot of children are just plain out medically labeled with a problem if they don't meet a certain criteria. Sorry, I am not against doctors or the medical field, don't misunderstand. I just know that the way things are in life in general, children are so complex in behaviors, they did not come with manuals, and parents that struggle with not knowing what to do, but not because they are stupid but for the mere fact children are all different and complex in character,behaviors and born with a natural way of getting their way . I love children, they are one of my greatest joys in life. I had the opportunity to live in a place where I got to be in the life of a down syndrome little girl from the time she was born. We have a special relationship. She is now 6 years old. Just as sweet as when she was born. I hope this post is not misunderstood and you get offended. That is not the intent. God loves these special children . They in some ways are freer than we are. I really want the chance to meet more.
To you parents raising these special children, I just want to commend you for such an opportunity of a life time to love such children . It is a responsibility that only love can overcome such a journey. By all means not negative speaking. May Love, Hope and Joy be your companions.

Tabetha - posted on 09/10/2010

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Wow! My son is 3 soon to be 4. He has started smacking himself in the face with both hands. He even busted his own lip. I'm so sick of hearing that this is a phase that he will grow out of. I wonder what I am doing wrong constantly. I took him to the ER and refused to leave until they did something and they gave us arm braces to keep him from bending his elbows and we has several different helmets. He also has leg braces. On top of that they put him on a sedative. SO I guess the only option to keep him from beating himself senseless is to drug him and restrain him. Everyone has an opinion and I'm always torn on what I should be doing. I can't imagine what I am going to do when hes six years old. I have taped pool noodles to everything he owns to keep him from crushing his face. When he bangs and I can't stop him he just hits the noodle and he can't hurt himself. He started school a few weeks ago and last week he came home looking like he had been in a UFC cage fight. I haven't taken him back to school. I'm with you girl. I also have a 2 year old son.

Jackie - posted on 09/10/2010

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We finally had our daughter hospitalized for a 2 week period 2 times during her elementary years. It was the only way I could get some help. All of her doctors were at the end of their rope and did not know what to do. It is almost impossible to get a good child psychiatrist without a referral which is what we got while in the hospital. They will also refer your family to any services both you, your spouse or other children may need. Good luck! I had to yell at one of the nurses at her doctors office the other day and say "This is bullshit! Either give me an appointment immediately or have the doctor call." He called me 2 hours later and has never called me before this. We get the looks out in public all of the time and it drives me crazy. Always remember to take are of yourself. Do not listen to anyones opinion and believe that you are a good mother to your child. No one has the right to an opinion if they haven't lived it themselves. Hope this helps!

Twala - posted on 09/09/2010

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I am a mom with a special needs child. My child is 18. One thing that you can do is join a support group of parents who have special needs children. It is great to have someone to share with. Also, do you have freinds or family that have special needs children if so, you guys can set up schedules were you would give each other breaks. I have a freind that takes my daughter sometimes just to give me a breather. You can also try and get respite services. respite services is when someone comes into the home and allow you time for yourself. I hope this is of some help.

[deleted account]

I'm sorry you had such a bad day. We're still working toward independent toileting with our 8 year old who has Down Syndrome, but one thing we've done lately that is helping is Therapeutic Listening through our OT. (They have to be certified to prescribe it) Our son seems to hae more control and has actually initiated bathroom trips a few times recently!
The egineered music is supposed to help increase the feedback to the brain from other parts of the body.
After the crazy reaction he had, you might appreciate that the first result we saw was sensory regulation. He didn't shout so much and was less extreme in his emotional swings. Sorry to say its not cheap and not covered by our insurance, but it has saved us other grief as he's become more able to handle school situations, transitions, etc.
I hope today is better!

Michelle - posted on 08/22/2010

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.MY GOD how dare they fail you and your family like this! Firstly the dental receptionist shouldn't be working in a public service position if she doesn't want to SERVE.. people who carry on with snide behaviour when they witness parents struggling or children acting out are very immature and unworthy of your concern for their opinion.
Second look into the possibility of having dental/medical treatment that is urgent and requires your child to behave or be still for long periods (as with an ECG) carried out under anaesthetic if that option is available. I'm in Australia and lucky that its covered by medicare if it's a vital treatment.
Thirdly..You NEED a new paediatrician! your child and you both deserve to be heard and taken seriously,don't settle on one mans opinion seek others until you find someone who WANTS to help you and your son, who is actively seeking to diagnose, treat and support both of you. It's very hard and sometimes travelling long distances is required before you find the help you need but you will know when you’ve found the right one. I moved interstate because of the lack of interest and assistance in my home state for my babys problems, I didn't want to move away from family and friends but for now it’s a necessary Sacrifice.
It’s hard not to be embarrassed by our childrens distress or behaviours but if you hold your head up and not show concern for peoples ignorant opinions then eventually the embarassment will subside and you'll focus more on the good things you share with your son. Show your son that you will be there to hold him when he has a meltdown, he needs to know you don’t care more for peoples opinion than helping him to calm in his distress. He may still scream and throw himself around but he will know that he’s safe in mums arms when he eventually crashes back down to earth.
Positive Parenting is a group here where parents like us can show everything warts and all because its run by parents like us with kids like ours and basically the idea of meetings is to exchange our frustrations and offer up suggestions on what might work or has worked for children and parents in similar situations. Is there anything like this in your area.?
People couldn’t begin to know how much effort you make daily for your family nor possibly imagine the erosive effects on our own psyche and physical wellbeing from the strain of raising our "difficult" children.I didn't have a supportive family or partner to help me with my autistic son, they couldn't relate or understand and your sister shows she knows very little about your case and should be ashamed for not offering you more solid assistance with the children and at least support you by being a good listener. Anyone can quote from a book or commercially promoted do’s and don’ts of child rearing, but few can walk in your shoes  Yes routines help but not necessarily with Every child, your plea here is proof that your already doing everything you can for your family. You need a break before advice.
Have you got a psychologist for your son? if not get a referral from your GP , again don’t settle on the recommended one if not happy keep seeking until you are. Our psychologist made all the difference I would have gone Insane without his intervention with schools, doctors, behaviours, and having him there to confide in. I really hope that you find someone who cares and offers genuine assistance soon. . if your family wont help try getting some respite, fun outings for your son and a break for yourself. ..you CAN keep going on but you will have many moments where it all overwhelms you, if you have a meltdown yourself thats ok!.. its natures way of telling you your working hard for your family and need time out to find a little happiness to fuel you up for the next round.
Best Wishes x ♥ x

Victoria - posted on 08/22/2010

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You are an amazing mother, you are there for your children every day and fighting for them, you should be very very proud of yourself sweetheart! xxxx

Amber - posted on 08/16/2010

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My name is Amber and i'm new here! I have a 7 year old son who has been diagnoised with adhd, aspergers autism and bipolar. I also have a 5 year old who is adhd and a 3 year old who watches and copies the behaviors of my oldest two and a 19 month old. The reason i'm on here is because I need some support, advise anything. I am emotionally drained. I just feel very alone, all I want to do is cry. My 7 year old, still poops in his pants, throws temper tantrums, wont sleep at night and gets violent. We see a thearipist and doc every week and he is on meds. Nothing seems to help. I try a reward system, i try to be consistent as possible, I try time outs and taking things away. I make a schedule up everyday. It just seems like everyday is a never ending struggle. I feel like im not a good mother because everything i do everything I try does not work. I dont know what to do.

Shannon - posted on 08/16/2010

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Hang in there. My now 16 year old used to act like that. We still have our moments and obviously other issues now, but it has gotten much better. I still remember being in the store with my oldest having a major tantrum and and grabbing hold of his arm and trying to keep him from tipping over the shopping cart in which both he and his toddler brother was sitting in. EVERYONE in the store came out to the end of the aisles to look, but not one person offered to help. I finally got them to the car and got them home and that night noticed the perfect bruise of a hand print on his arm. I cried about it for days and worried that someone would see it. Do what you have to do to protect your child and get him the help that he needs. People who have not been there, don't get it, even if they are "specialists".

Sherri - posted on 08/14/2010

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Virginia, I am so happy you will be getting some help from your friend. It always helps so much to just get some time to yourself.

Christine - posted on 08/14/2010

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Virginia,

I empathize with what you are going thru so much. My bff has a 10yr old daughter who has Downes Syndrome and severe MR. The child gets physical, screams, yells, and just basically loses it at least 100 times a day.

I see my bff spank or smack the child after she has been attacked by her (and the child is much larger than the mom) but all I really see happening out of that is that the child now knows how to hit harder...vicious circle. I feel for u since she is a single mother who has just been diagnosed with ovarian cancer.

My suggestion to u is the same as it is to her...You need some respite. Someone who can give u a break and take her for a couple days. I dont know where u live, but respite care is offered thru the state. Contact Dept of Human Services of Dept of Mental Health in your state. Even pathways...they can offer resourses to help get u plugged into support groups for parents of children with your type of disability. It's not easy, but as always, persistance pays off.

One more thing, you are NOT a terrible mother. You are just doing the best u know how with the situation and circumstances you were dealt. It IS ok to ask for help when you need it. THATS what my taxes pay for.



Good Luck!

Elena - posted on 08/13/2010

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Best friends are the best. Do you think you will be patient with her? Divorce is never easy.

Virginia - posted on 08/13/2010

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Elena that sounds like a wonderful idea.

I have news that will help me out to tell you all.

My best friend, Deanna, and her two kids are coming to live with us. She is great at handling my babies and Zachary loves her daughter gracie so much.
She's going to babysit for me anytime I need, and I'm going to help her get on her feet now that shes going through a divorce. I'm sure things will all become a little less stressful with her here to help us out.

Elena - posted on 08/13/2010

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Dear VIrginia, I was wondering if you have any time to take care of yourself? if not. maybe someone can help so you can go and just catch a breath? Yoga, meditation helped me so much but i had help in the house.

Ruth - posted on 08/11/2010

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So, with everything you have going on you have time to organize? I have 4 children one with special needs, who is a 14 month old twin that was 3 months premature. We are back and forth from the hospital 3 hours away. My 11 year old has ADHD and my 6 year old is a drama queen. One has therapy 3 times a week and I am supposed to go through excercises everyday 3 times myself. School is not in session and this summer has been tough.
I feel your sister needs to support you in a different way. Routines are hard to keep. Calling in "super nanny" does not work in these situations. How can someone tell you how to discipline a child that has no formal diagnosis. You need to push for them to find what condition your child has so that you can do what is best for that condition.
Back in the 70's the solution for most special needs children was to put them in homes or hospitals. I don't feel that is the best solution either. You love your child more than anyone else ever can. If anyone can do it, you can. You have to remember that God allowed you to have this child because he knew you could handle it. Pray for strength, even if it is to not kill the receptionist at the dentists office for being so judgmental and not having any idea what you go through on a daily basis. If your sister is willing to offer free advice is she willing to give you a break once or twice a week to recoop, have her help you organize (if that is also what you want.) Some days are worse than others.

Hang in there, I know it is tough. Push for a diagnosis as best you can. You may have to be a bi***. It is your child and no one else will fight for him either!!

Mary - posted on 08/11/2010

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I want to encourage you to not feel in any way that you are a bad mom. I have five children, three of whom had disabilities, and grand children also with some disabilities. It is truly difficult for people without children with disabilities to understand the life of these families.

The most important thing I have found in dealing with the problems presented, whether you are able to find the right meds or doctors or not, is to be sure that your children know that you love them unconditionally, and just refuse to be embarrassed by their behavior. I also suggest reading up on such things as Autism, or whatever you think your child might have so that you know the symptoms and behavior expected for each condition.

If possible, engage in conversation, reading, play and other activities with your children, on their level, and try to have some happy times with them so that they know that you totally accept them and love them even when their bad or violent behavior (not their disability) is unacceptable.

I have also found it helpful to stay close to my own spiritual resources and stay in prayer, realizing that God knows our needs, and that He loves us more than we can ever know. Reading from the Sacred Writings can be helpful for our own sanity, and the tests of our lives.

As to those who respond to your situation with rudeness or insensitivity, I would say love them, forgive them, and help them. Their behavior is because they are not in a place of understanding, not because of anything you or your child may do, and as one writer said, people behave at the level of their understanding.

Be well, and keep doing the best for your children, and may God bless you.

Susan - posted on 08/06/2010

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Don't let anyone make you feel embarrassed of your kids, the receptionist needs to show a little respect, You sound like your having a really hard time and anything I used with my daughter wouldn't work with your son, his needs are more severe than my daughter, You sound like a fab mum, as you are willing to try everything to improve his life and that of your other son. Don't give up trying and I hope that you get a dignoises soon and recieve the support you need on helping your son.

Roshelle - posted on 08/06/2010

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Our daughter Madison, has mild left sided CP. Basically, it's a baby that's had a stroked during or very shortly after delivery. Your situation sounds so similar to mine b/c for one, she still is not potty trained. The Pediatrician said until she quits automatically peeing on the towel after her bath, she's just not ready. So I hate dealing with that too b/c you know it's uncanny how they can wait until the darndest times to give us and everyone else in the tiny little room a "gift" I hear myself murmuring Bill Cosby jokes about how we all loved the baby's 1st poopsies...until they got a lil' older, then older...not so much love for those ones. Since our daughter can talk, walk, understand us, and make logical decisions, her only problem is a sensory one for the left side of her body. She only weighs 34 pounds...but of pure muscle, and when she thinks she's going all out, she does just that. We struggled for months, husband restraining her to keep her from hurting herself, sometimes not even making it to school b/c of a meltdown in the morning. I have cried till I have no more tears to shed. And quite frankly, I'm sure your sister had best intentions to offer help, but unless you are dealing with this type of behavior in your home day to day, nobody knows? Except other mom's...like me. I'm also a Registered Nurse in L&D no less. Irony. I do have the name of an absolutely fabulous Neurologist here in Atlanta/Alpharetta Georgia area. His name is Dr. Howard Shub and he is with Child Neurology Assoc. of Atlanta. Office: 404)256-3535. They have an office on Peachtree Dunwoody, Atlanta and one in Alpharetta. He is AWESOME to say the very least. He doesn't beat around the bush with anything...he believes you when you tell him she/he pulled your hair out and bit you on the leg....but the best thing then is he says: Here's what we're going to do about it. He's AWESOME. Truly saved us from certain nervous breakdown. We have 3 other children that have all of their own needs too so it's sooooooo difficult. I feel for you girl. I hope that little insight and a prospect for a really great Doc will open some new doors for you.Mothering is the hardest job on this Earth x how many kids you have, that's why I know we certainly must be going to Heaven right?? Hope the post helps you.

Sherri - posted on 08/04/2010

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Virginia, If this started when he started the meds, it may be the meds that are causing the behavior. My son was on Phenobarb originally which is known to cause behavior problems. I am not sure about Keppra because he wasn't on it long before we switched him again, but it could be possible it causes behavior problems. Like I said, it depends on how much you want to push. Switching a medication is always going to cause seizures anyway until you get the dose right so I really don't understand why they don't just switch the meds now. If it was me, I'd tell them to switch it now or give me a better reason why they don't want to switch it yet. Seizures are important but his behavior can be dangerous for him and others too.

Katherine - posted on 08/03/2010

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Sweetie, keep your head up. You are NOT a bad mother in the least. I too have a multiple handicap daughter, Emma (3yrs) that is trach, vented, g-j feeding tube, and can't even hold her head up. There are days that she cries and is really upset and I feel helpless.
On top of that, I have 5mos old twins.
We all have our "not so smooth" days with our angels. And it's ok to break down, and it's ok to get frustrated. But I'll tell you what I do. I have my 5min pity party by myself in my locked bathroom and I'm over it and deal with the situation at hand: twins crying and screaming, Emma's machines beeping - perhaps she's about to gag, telephone ringing, cell phone ringing, feeding pump beeping, deciding what to make for dinner, etc....

Regarding the medics; it's is difficult to find the right doctor for your child. Keep searching until you find the right one for yoru son. Ask questions, ask your son's therapist (if he has any) who they refer, or ask another mom with another special need child for some reference for doctors. It takes time to find the one that you're happy with. One of my daughter's therapist had a feeling her daughter was possibly autistic and she went through 5 pediatritians before she found the one that listened to her (needless to say her mommy instinct was correct and because she found a doctor that listened to her, her daughter got the care and the treatments that she needed and is doing rather well.)

And your little guy, I know it's hard, sweetie, but try to spend some one on one time with him. I try very hard to do this with my twins and it is hard. Do you have a friend that you can call on to come over with coffee or something when the boys are sleeping? Reason I ask is I do have a friend that is a night owl and when her or I feel like we're about to go insane in our four walls, we call each other during the day and I tell my husband "I'm going on a late coffee date with Shelly." We go to a dunkin donuts, get some decaf lattes and a treat, and sit in the parking lot and just vent our hearts out. And it feels so good to get all your frustrations off your chest. When I get home, it's like my whole day has been a page of a book that has been turned over.
I've learned that only another person that is in your shoes will understand truly how it is to be a mother of an angel. We can't just pick up and go. But, we do learn how to appreciate the littlest things about life in general to another level that only someone in our position is in. Everyone else that is not in your position will quickly give you suggestions and don't get upset. This is they're way of them trying to help you and at the same time they are thinking "crap, what can I do?"
So my dear, keep your head up. Acknowledge that you are going to have some rough days. Through the storm, keep your focus on your goal and accept the mishaps that happen. Then, think "what can I do to fix this now." The ignorant receptionist that said about your child hospitalized "Would you put your loved one in a place because they're having a bad day?...no?...thought so - put your supervisor on the phone."

Hope this helps a bit...it's easier said than done, my dear. But trust me - you are not a bad mother and not every woman can go through what we go through for our special need children.
♥ kat

Virginia - posted on 08/03/2010

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Oh wow.
Well he's only had 4 seizures so far. He had his first february 09, when he was diagnosed with epilepsy. Then he had 3 more and they upped his does to 2.5 mg twice a day. He's just gotten continually worse with his behavior ever since they started the meds, but the past couple months have been THE WORST EVER!
He's been seizure free about 4 months so far this time around.
I'm just worried about waiting, obviously he shouldn't be this aggressive, and he's starting 1st grade this month, I can't stand the thought of him hurting people at school and getting into trouble, that only adds to his confusion of what's going on in his mind right now.

Sherri - posted on 08/03/2010

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Virginia,
I sort of understand what they are saying but my son was not seizure free before we switched him. He went from Keppra to Depakote also. We had just increased his Keppra because of another seizure just one month before we changed him to Depakote. Depakote is a seizure med also. Why keep messing with the Keppra when he won't be staying on it? That makes no sense. Well, I guess it depends on how much you want to push. But I will tell you my son is not seizure free from the Depakote. He is also on Topamax and together they have kept him seizure free for a year now.

Virginia - posted on 08/03/2010

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Thanks so much for the advice everyone!

Sherri,
They told me they want to wait a minimum of 18 months and IF he stays seizure free for that amount of time, they will change him from Keppra to Depakote. I understand the seizures are the most dangerous part of this, but he's not just hurting himself during his meltdowns, he's hurting anyone around him, and he doesn't even care who it is.

Sherri - posted on 08/03/2010

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Let me start by saying, I sympathize. I have been there myself. My 10 year old is physically and mentally handicapped and for years his behavior got worse and worse. The pediatrician told me it was growing pains. I'm serious, she said growing pains! Then the behavior got worse. Screaming, crying, hitting his head, biting his knuckles until I would lose it myself. I was at a loss and so was his school. His teachers and therapists could not even work with him anymore. I had stopped taking him into public except for dr. appts.
Then after almost 3 years of this extreme behavior, and with the backing of his school, I got the neurologist to change his seizure meds to a seizure med that also helped behavior. Many people don't know that behavior medication can mess with seizure medication so you need one that does both. My son is now on Depakene (Depakote) for the last 2 years and though I will not say he never throws a fit, he is a changed little boy. I can take him into public again. He works with his therapists and even laughs while he's doing it!
Here's what I recommend: Is your son in school? Get his therapists and teachers to back you up and tell his neurologist you demand a change in his meds to one that will control his behavior also. DO NOT take no for an answer! If there is one thing I have learned, it is this...You are his mother and noone, not even the doctors, know better than you. You have the right to demand a change in his meds. Be diplomatic but firm.
As for your sister, unless she has a special needs child herself, she will not truly understand what it is like because neither does my sister. Let her "advice" wash over you and do what you think is best for your child. There is nothing wrong with a spanking when necessary and if you have to scream to be heard, so be it. You are in charge and you are not a bad mother. You are just working with something beyond your control right now. Once your son's behavior improves, you will see an almost totally cooperative little boy.

Tracey - posted on 08/03/2010

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WOW! The aggressiveness and acting out could be ODD (Oppositional Defiant Disorder) which my son has, in addition to the ADHD.

It isn't easy and I wish I had a magic cure for you.

Tammy - posted on 08/01/2010

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If you live in the DFW area I have an amazing place for you to take him, I encourage you to call me. I read my story reading your and cried and relived the last six years. Ours is still not over but it is so much better, and the violence is gone. I have to say its a GOD thing but he sent us to the people tht he worked through!!

Tammy - posted on 08/01/2010

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You can call me if you would like, I have been down that road for 6 years, I have had cops, doctors, psychiatrist, and CPS make me lock up my child in a mental facility 18 times. I have fought every entity out there to hang on to y child and prove that i am fit enought to care for her. I kept fighting and finally after being beaten and charged by my child, knife pulled on me and the cops, we found out that my daughter was screwed up by all the meds. They made her more violent than the actual cause, which are you ready for this Thyroid tumors. Give me a call, I can help you by listening to you and offer advice, I can help you remain strong with the doctors and all the authorities that will come into your life.This is why I figured God put us down this path of wrong diagnosis for years so I could be a voice and help others that are going through the same thing. My name is Tammy 817-757-0252 call me anytime during the day, and Tues, Wed, Thurs. day or night

Andrea - posted on 08/01/2010

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I have a 6 year old special needs child and although he doesn't have behavioural prolems i do see alot and speak to alot of parents from school...
I think it is great to have a formal diagnosis so u can work with it and he will then get the appropriate funding that all disabled children or people deserve but really its not going to change the way your son is diagnosis or none he will still be the way he is.... I have no advice for you as i said my child has no behaviourals i just think to try start working on the problems now don't wait for the (slack) professionals to diagnose him it's obviously taken 6 years to get this far who knows how long it will take...
I hope you find what you need and what helps your children i to was a single mum of 2 one with severe disabilities and one "average" child its hard enought with out the additional needs.....

Joni - posted on 07/30/2010

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I'm so sorry. I understand what you are going through. I have a child with multiple disabilities as well and I would say the worst years were from 3-7. I don't know where you live but you need to get in touch with your local Regional center, mental health or some place like that and get your child some help. Change doctors, anything that will benefit your child. I would definitely recommend in home behavioral therapy as well. And remember, IT'S NOT YOUR FAULT. You might think about finding yourself someone to talk to as well. I went thru therapy and it helped a lot. Someone not close to the situation always has a better insight than family. Hope this helps.

Gia - posted on 07/30/2010

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Well, your sister's advice is pretty good. But good luck keeping a house spotless and alphabetized with children! Routines/schedules do help out a LOT! Some people think "but I'm a stay at home mom, why do we need a schedule aside from mealtimes?" - there's soo many things that can become routine. Such as a reading time, TV time, outdoor time, movie time, activity w/ mom time, etc. Yelling at your kids will only make them act out more, since their behavior is often resulting in their environment,if they are in a calm, quiet, relaxing environment and have all their needs met, they should act much calmer and more patient. Of course, it takes time! Same goes for spanking. Time outs and loss of priveleges/toys works much better in the long run! Everytime you raise your voice or your hand to your child you are breaking their trust in you! I have a son who's mentally handicap and has a SEVERE case of ADHD. He loves to cause problems so that he can laugh about it. Somedays I swear he's not happy unless someone is in tears crying because he hurt them, or I''m upset with his behaviour and trying to put him in time out! It can be very frustrating! Another thing that helps tremendously is knowing what kind of "obstacles" can occur and be prepared for it. I keep a duffle bag in my trunk that's like an "emergency kit" which contains spare clothes, bibs, diapers, even juice boxes andnon-parishable snacks, and "quiet activities" - just about everything that an solve any problem that arises while we're "out and about" so that way I don't have to be stressed because my child had an accident, soaked his clothes in drool, ate something and got it all over him, or we're stuck waiting in a waiting room longer than expected (quiet activities!) - which can also work great when fighting in the car or not able to sit still! It makes life go soo much smoother! And the snacks because sometimes that's what kids need when they are acting up! All kids are different so it's hard to say what your individual children's needs are. Hopefully that will help you? As far as his "tantrums" - even though it seems like he doesn't care about getting hurt, it's not very likely that a child is going to break a bone or get a noncussion from a tantrum. They are great at ACTING! Of course, accidents do happen - so you just make sure that dangerous objects are moved during a tantrum. Sometimes ignoring them works. The WORST thing you can do is to give into them! (they will NEVER end if you do!). When my kids first started their "tantrum test" when they were maybe 2 years old - I ignored them from the start, but my mom would throw herself on the floor and sound all crazy just like them, next thing you know they are sitting up looking at her laughing wondering "what is wrong with HER?!". Hopefully you're able to get it all under control before they get older, it's very difficult but the sooner the better as the longer you wait, the harder it gets. If you ever need to talk, I'm here!

[deleted account]

please go to www.nichcy.org and click on state resources. Find your state and look for the state ChildFind organization, which will do a free evaluation of children at risk for disabilities. Clearly you will qualify. You can also ask at his school for the evaluation to be done, but you MUST put your request in writing. On the NICHCY website, also look up under Organizations for Parents and contact state Parent Training and Information agency, which can also hook you up with the appropriate evaluations and services.
take care of yourself!

Virginia - posted on 07/30/2010

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Thank you all SO much for the kind words, advice, and encouragement!

I went into the pediatricians office and demanded a referral to the only child phsyc in the area (an hour away). They did, but he kept telling me that he can't give him drugs...I don't remember asking for any drugs for my son, if anything I'm upset that the drugs he's on is making things worse!
Zachary had a huge meltdown when we left, just like I knew he would! He punched me and head butted me in the head and stomach, dropped to the floor and flailed about like a madman and screamed at me "NO MOMMY NO GO HOME!!!!!"
The nurse there that I really like came out and carried my youngest to the car with me. Zachary was still going on with his fit, she got to see almost the whole meltdown, the meltdowns that he has everytime he doesn't get his way, 5-6 times a day! He kept fighting me to get into his booster seat and started banging his head against the car door and backseat. I started crying because no one other than family has ever watched this part of his tantrums and I was so embarrassed. I didn't want her to think I was hurting him.
She buckled my baby in the other side of the car and walked around, took my arm, pulled me to her and hugged me so tight! I couldn't hold in all the tears! I just stood there hugging a practical stranger, crying my eyes out and telling her I was so scared, I don't want to be a bad mom!

She cried and she told me that I'm a strong woman and an amazing mother, I can get through this, and anyone who looks at us the wrong way or says something about it can kiss my ass and her ass! HAHA!

I thanked her and told her that she's the first person in a long time that's ever told me I'm a good mom and it meant so much to me.

Zach was still freaking out in the backseat so she leaned in and told him to please be good and be nice to mommy, it's not nice to hurt mom.

We left and he continued to head butt the seat and scream until I told him we were going to watch his favorite movie at home.

*sigh*

I CAN DO THIS! I HAVE TO!

The doctors want to wait at least 18 months and IF he stays seizure free they will switch his meds to a different kind that is made to prevent seizures and help with mood swings. That seems so far away, but I guess it's better than nothing.

I've got an appointment to see the child phsycoligist but their first opening is in October.

In the meantime they keep telling me that if I can't handle him to hospitalize him.

Today we are going to print out some flash cards with emotions on them, and I want to work with both of my boys on expressing their emotions without hitting and screaming, no idea if it will work, but it can't hurt right?

Misty - posted on 07/29/2010

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i wish you luck remember to breath breath breath and cry all you want if ppl don't like screw them we have a diagnosis and still have to take crap from family and school so i got little business cards that tell about autism and i love to hand them out with a smile of course it will get easier it will get better just don't ask for timelines there arent any and yes i have had to cut off family for their stupid views but i tell my son it is not his fault i love him just as he is if he didn't have aspergers he wouldn't be the same boy and i wouldn't trade him for anything!

Donna - posted on 07/28/2010

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No way I'd expect alot better from our authorities, but then again, sometimes all they care about is their own lives. yeah I have been there withh Aaron, he can be quite violent, and I had a lady lecture me because I had had enough of him hitting me (he;s hurt my back from constantly pushing me), I smacked him on the bottom twice because he wouldn't stop and the woman had a go at me and said she never wants to see this again and the fact that they (as there were others around, I was taking my other son to TKD) were there to help, I was mad, I explained that he came out of class and just slapped me in the face and to ignore his bad behaviour I decided to reward my other son with a sweet from the garage in the hope that he would learn but all the way there and back he kept hitting me and my other son. I tell you when I said to the woman what happend and said I was at the end of my tether not knowing what else to do, she never said anything again and has been nice to me. Also my old neighbours accused me of abusing him, as I was shouting and he was upset, what they didnt' see was that he wasn't upset at me shouting at him but because he coudn't find his toy. Well at least if got me help and proper respite for a weekend a month, just sad that is has to come to that. I do see some of the adults I work with in and out of hospital because of medication (especially seizure meds) as the side effects are'nt good, so sad. I really hope you get the support you need. Sorry I wasn't critizising your house, it's hard enough to look after special children and keep a house, I know this first hand, my husband couldn't see how hard it was, but saying that it got easier when he left, one less child to take care off. yeah you know your son and what works and doesn't. I just hope and pray that things get better for you and you get the support you need. You need to fight for everything I tell you he who shouts loudest in this country works.

Rachel - posted on 07/28/2010

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sweetheart i am from the uk england,i have a child with odd md cd.it is very challenging at times just like what u appear to be experiencing.
yes definatly keep the younger child out of way when he is in a rage but when he throws things don't speak to him or make eye contact at all just go and stand up what ever he has thrown he will eventually get fed up of it and calm down,i don't think holding them until they calm down helps as that just makes them worse,and regarding the sister well does she not realise that cleaning the house if it is not up to her standard then y dont she do it for u and help instead of criticize

Donna - posted on 07/28/2010

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you poor soul (please know that this isn't a feel sorry for you) but you are going through so much and so on your own. I think before you start anything with your son you need a proper diagnosis.Yes boundaries and what your sister is saying to a certian degree are correct but you need to know what is wrong so you can work with him. i had terrible times with you younger son who is now 10 but acts 6 and still has tantrums like a 3 year old, time out works for him now but didn't when he was young. I feel lucky that I got help here in the UK you don't need insurance we are all treated the same, although post codes can mean the difference to what services are available. I pray that you get the help and support you need. You're not a terrible mother, only mothers who have special children can understand what it is like, they are all a bless and I know you know that, the factyou don't want him to be in an institution says it all. you should ask your sister to come over and clean for you, tht would be a good start and help. You can't do everything yourself. I hope that this is an encouragement. I have had these arguments with well meaning friends who don't have kids or don't have kids with special needs. But one thing that is really important I have found is a good routine, where your son will feel comfortable what is coming next, hard when they are young but will help in time and also strong boundaries, carry through any threats, and again hard at the beginning, I have been there and really think of you and your situation. Do you have social workers over there who could advise you and be able to tell you of any agencies that can help? Can't say they are all that great here as they do get it wrong but some of what they say does help.

Good luck and hope things will get better for you and your family.

Iridescent - posted on 07/27/2010

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We're dealing with a lot of issues in our home right now as well. The only clinic that was worthwhile took a TON of searching to find! Our doctors kept blowing off our children's issues, as did the school. They are real! My 9 year old broke his hand because he punched his 11 year old brother so hard this spring, for nothing! And this is regular behavior for him, along with a lot of other things. Our 3 year old, every doctor appointment the doctor asks us if we'd had him officially diagnosed as autistic yet. So I set up an autism eval with one of the doctors that said he is without a doubt at his last visit, and instead they do the blasted Denver Screening tool and said no diagnosis yet, come back in 6 months to re-eval. Hell no! That was not an autism eval! We have an 11 year old autistic child, we KNOW what autism is! We are not stupid.

Anyway, I called clinic after clinic. I searched online. I called child advocates and asked who they usually see as a good, accurate doctor that doesn't see one specialty all day so misdiagnosis one thing as their specialty, because they may be similar. It took a lot of work and me bawling at a totally different child's specialist appointment for her liver to finally get the appointments we needed. They couldn't get the boys in quickly, but they did have medical records compiled, have gone through them, have set up therapy appointments and did something called a "Pre-Assessment" which is regarding the boys, but not testing them yet, due to waiting list issues. I'll take it! That was 2 weeks from first call to appointment. They're setting up immediate help, and will do the full evaluations as soon as they're able and give them the proper diagnosis.

You may want to consider admitting your child to the hospital. I'm not saying this to make you feel bad. The reason I am saying it is because very few clinics will help now and determine cause later when the waiting list is too long. Most just make you wait and suffer and lose the time that the child could be improving. With seizures, how can they say he's controlled on his meds when 10% of his seizures are still occurring? That's ridiculous. 0% should be. None. That is control. Plus seizures DO effect the brain and DO cause brain disorders. That is known. Admitting him to the hospital would bypass the huge horrid waiting list of minimum 6 months and get him the help NOW, and possibly get him to a real control of seizure activity NOW, safely. That's important.

Your sister is an anal control freak know it all. Gotta say it. It appears she's never had a special needs kid, which is fortunate for her, and I personally would love to let her live in my shoes for an hour or two just to show her how insane she is.

Nicole - posted on 07/27/2010

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i had sort of the same problem with my child which is now 10 but when he was approx 18mos i had a consult with an early intervenist and they saw how he reacted at times and this is what some told me if hes in a safe place like carpet or something let him have at it and ignore him because mine had a habit of just throwing himself back without warning whenever he got mad whether it be in your arms or on the floor he would of course u dont want them beating their brains out by theirselves but say they are in living room with carpet and it start let him throw self back throw a fit yeah he may hit head but it carpet and if as in ur case he hurts other child just remove the child so they cant get injured and ignore the tantrum but at same time with out eye contact or acknolweging that hes there just make sure he not in danger if it just behavior and eventually they will see that they get no response and cut down on frequence or quit mine eventually did and i felt bad a lot of times during his outbursts but i guess it kinda worked oh and ive also been told and had to do when they are like that just sit in the floor with them holding them so they cant hurt themselves or you untill they calm down ive had to do that to and yes ive had my fair share of smacks in the face and feet and if u are in public people may think ur crazy or look at u funny but they just dont understand the situacion they think i believe oh just what a spoiled brat and the mom letting them get away with it well i quit caring what other people think when it happen in public because i know how my kid is and what i myself have to do to control him and be able to deal with it myself

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