S.S. asks from Cleveland, OH on April 20, 2008
Major Behavior Problems with 2 Year Old Son
I am a proud mother of two beautiful children, a daughter who is 7, and a 2 year old son, who will be 3 in August. My daughter is happy, friendly, and outgoing, and does excellent in school. She is getting 100% in almost all of her subjects, and always gets excellent marks in behavior and is a delight to be around. Unfortunately, I cannot say the same for my son, believe me, I know all about the terrible two's, my daughter had them big time, she threw many temper tantrums a day, and they lasted for a long periods and were very intense, but she grew out of them eventually and is much better now that she is older. But what is going on with my son has gone way beyond the typical "terrible two's" or "boys will be boys". He is completely out of control, child proofing does not contain him, he climbs gates and can figure out many of the child proofing devices and has excellent problem solving skills. He is also very destructive, my husband and I have tried every method of discipline, and nothing works. He understands what we are telling him and knows that there are conscequences to his actions, but he does not care. He also is not talking at all, he can make noises, but cannot form words, and the doctors don't seem to know what is wrong with him. We had his hearing tested, and they came to the conclusion that his hearing is normal and that he chooses to tune us out and ignore us. He has seen his pedeutrician, who referred us to a pediatric neurologist. The pediatric neurologist thinks he may have autism or ADHD, but cannot give me a concrete diagnosis because he is to young. The doctor says that by observing him and going on information that I gave her, that he does not fit the characteristics of a child with autism, but the question should still be raised because of his delay in speech. Our pediutrician recommended speech therapy, but we found out, much to our dissapointment, that our insurance does not cover it, so we saugt help from Help Me Grow, a free service provided by the government, but the speech therapist only works with my son for 1 hour, every 2 weeks, that's not enough. We did find out that he qualifies for free preschool when he turns 3, but that is still 4 months away! I don't know how we are going to survive in the meantime. My husband and I have reached our breaking point, and it has gotten so bad that we had to ask my mom to come stay with us at our house because he has become to much for just me and my husband to manage, he needs constant supervision and we cannot turn our backs on him for one second, he can't touch anything without destroying it. To give some examples, he unplugs our nightlights from the outlets and bangs them against the table and breaks them, he takes our jugs of drinking water and pours them out onto the floor, he takes my expensive lotion and eats it, and then squirts it all over the carpet. He also turned on our stove and melted a plastick container on it, we have no lamps in our living room because he pushed them all over and broke them. Whenever we give him something to drink, he holds the liquid in his mouth and spits it everywhere, and when we tell him not to do that, he takes what is left over in the cup, and deliberately dumps it onto the floor. There were no signs of any problems at birth, he was a very good baby, he only cried when he was hungry, he had a very good temperment and we could take him everywhere. He was a planned pregnancy, and I was so excited when I found out I was pregnant with him. I had a wonderful pregnancy, no morning sickness at all and I felt fantastic all the way through. When he was born, all was bliss for the first couple of years, he was just the joy of my life, but now, there is no joy with him anymore, now it is a test, to see if I can make it through each day without completely loosing it. I feel like such a bad mother because I get so frustrated with him and all I do lately is yell at him. I also feel like a failure, because I took such good care of myself during my pregnancy and did so many things better this time than I did with my first pregnancy, I also made the extra effort and breastfeed him for the entire first year of his life, which is supposed to be very beneficial for their body and mind, I guess it wasn't enough. The pediatric neurologist prescribed retaline for him, the prescription will arrive any day now, but I am curious to know if any other mothers out there have a child with these problems and has had to be medicated this young, if so, I would love to hear from you.
So What Happened?™
Just wanted to thank all you awsome moms for being so supportive and for all your suggestions! I just wanted to update everybody on Dennis, because it has ben a while. I'm happy to say that he is doing much much better now because of an herbal remedy called Bright Spark, all natural and no side effects! We found out about it 2 days after we put him on Ritalin, and decided to give it a try. He was only on Ritalin for a very brief time, and now he has ben on Bright Spark for 2 months and I have my sweet little boy back! While he is still not talking, that really doesn't bother me all that much because I'm just so greatful for the magnificent chainges in his bahavior! Potty training and speech will be an adventure, but one we will tackle!
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S.P. answers from South Bend on April 21, 2008
I would also be wary of medicating him at this point. I believe an evaluation from First Steps might be able to give you some ideas. The evaluation is free. Therapies that might then be recommended based on the results of the eval are provided on a sliding fee scale. First Steps is Indiana's branch of a government program for children with special needs of any sort from 0-3 years of age. The phone number for the local office is ###-###-####.
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C.W. answers from Columbus on April 21, 2008
It is NOT your fault!! (I will keep repeating that, so you will begin to absorb it!)
Keep contacting the doctors. Make a video, even with a cell phone, so you have something to document this. Show his non-verbal responses. Document his behavior - 10 AM, spilled lotion, ate some, threw up all over. Show this to your insurance company. Show it to speech therapist.
It is NOT your fault!! (I will keep repeating that, so you will begin to absorb it!)
Keep talking to all resources - school Special Ed programs, they may be able to help diagnose. Show that video to them. Speech pathologists, etc. Keep on fighting for him. Your son NEEDS that from you.
It is NOT your fault!! (I will keep repeating that, so you will begin to absorb it!)
Get advice from other parents - like this! Don't give up!! Children cannot verbalize what they need, this is probably making him even more frustrated, so he acts out even more. It may get worse, before it gets better.
It is NOT your fault!! (I will keep repeating that, so you will begin to absorb it!)
Watch Patty Duke as Helen Keller in "The Miracle Worker", she played a "wild" uncivilized child who was stuck inside herself. Your son may have some of the same frustration. She was able to be reached, he will be also - you just have to persevere until the key is found!!
It is NOT your fault!! (I will keep repeating that, so you will begin to absorb it!)
Surround him with SAFE ways for him to release frustration - carefully supervised bathtub play with LOTS of splashing!!!!!!! Foamy rubber balls and toys, which can be squeezed and thrown, with less damage. Maybe avoid toy building sets with hammers and pegs, he may not be able to avoid throwing the hammer. Help him use dexterity in fun ways - frosting cupcakes! Finger food cereal, not bowl with liquid.
FIGHT FOR HIM, you are all on the same side. Don't fight WITH him - at this point it is fruitless, he is not able to respond to punishments. Become TEAM DENNIS, everyone focused together on solving this, and all on the same side.
GOOD LUCK!! It is NOT your fault!! (I will keep repeating that, so you will begin to absorb it!)
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E.W. answers from Dayton on April 21, 2008
I would be very hesitant to give such a young child Ritalin. The long term effects can be devastating. I do understand where you are coming from. My daughter (4) did pretty much the same things your son did, right down to the speech delay. She isn't autistic or even ADHD. (We had all the tests run by so many Drs.) She's actually very gifted! (High IQ, Comprehension etc..)
What worked for us (and this is HARD!) was to take away all her toys when she acted out. She learned that if she did something bad, she lost something she cared about for a long time. My husband and I had to stand firm and not give into her. We also ignored her when she screamed and acted out. (slamming doors, kicking the wall etc..) When she hit us, we hit her back on her butt and put her in the corner for five minutes. There were times I had to stand right behind her to make sure she stayed in the corner.
It took approx. one month of consistent discipline from both of us. There was never a time where she got by with anything. On the days where she just ran us ragged and we felt like giving up, we had to dig deep and hang in there. It was not easy by any means.
We also took extra time to play with her. We made crafts, we read books, we baked etc.. We gave her a measure of independence by letting her decide what fun thing we were going to do with her everyday, BUT if she acted out, she lost this special time and had to spend it in her room. We showed her that by acting good, she was rewarded with things she liked to do. I know it sounds harsh, but we were not getting answers from the Drs, and I flat out refused to put my child on mind altering drugs.We had more than one fight w/ her old pediatrician over this, but I am so happy I held my ground.
Now we have a wonderful 4 year old little girl who is very well behaved. She will say please and thank you w/o prompting, She picks up her toys, she listens to us 9 times out of 10. (She is four!) She will still throw a temper on occasion, but it's not severe like it used to be. She also knows how to read, dress herself, and she knows her alphabet. She can write a little and spell simple to medium complex words.
I hope this advice helps you and I just want you to know that you did nothing wrong and you are doing nothing wrong! You're not the only one who has/is going through this. Hang in there and I will be praying for you and your family.
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L.B. answers from Columbus on April 22, 2008
S.,
I am a speech-language pathologist, and I have a few suggestions...
Instead of the neurologist, try and get the physician to order a "full developmental test" which is typically done at Children's Columbus or Cincinnati due to suspected autism and delayed communication skills. This may lead to a diagnosis which will in turn be paid for by the insurance. Your speech therapist and EI specialist can give you summaries of performance and their professional opinion to push the MD along if needed!
If the MD doesn't want to go to that extreme of the full developmental testing...ask him to least consider a behavioral consultation for helping with the behaviors.
If you are able to go to a hospital based speech therapy or even Columbus Speech and Hearing, talk to the "Patient Financial Services" staff. They may be able to figure out a way of affording additional therapy that your son needs. Don't just take "no" from insurance0--have the MD sign an appeal. Have him document a non-developmental diagnosis.
Talk to the Help Me Grow staff. You have an IFSP, if you feel that 2x per week of speech is not enough...you have the right to change that plan. Or, ask the facilitating EI specialist to focus more on the language/behavioral interventions to make your son more successful.
Next, does he have any sensory issues? For example, does he crave movement, does he shy away from soft things, does he close his eyes and flash the lights?...an Occupational therapy evaluation and therapy may help if the "Behaviors" are more sensory seeking behaviors versus reactive behaviors.
I know that the above may seem alot, but I hope it helps. You have truly done right by your son and family by starting therapy early. The earlier the intervention the better. It is a struggle now, but borrow my faith!
Good luck,
LCB
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M.R. answers from Columbus on April 21, 2008
S.,
Welcome to the world of atypical developmental disorders!
First and foremost, you cannot let these hurdles of doctors not knowing what to tell you and insurance denials be road blocks. Dust yourself off, and pick yourself up, it may happen again and again before you think you really know what to call your son's condition, you may never have a name to call it.
We have been there, and you just have to move on to the next doctor until you find an answer that makes sense to you. You will know when you find it. Refuse to be a victim of insurance, schools, doctors, etc. Untie your hands and move on to do what your son needs right now, what ever that may be for today...
We have had the best luck, far and away, with Developmental Pediatricians. They will act as a case manager for you also and will make referals for his entire program. It may take a while to get in to see one, but make an appointment and put yourself on thier waiting list for cancelations, and call every week to see if you can get in sooner.
If your insurance will not cover speech, you must find a way to pay for it yourself. You will probably end up doing this alot, it is a sad fact for children with developmental disablities. It is not fair, but it is what it is. Even once he is in school, the public school is NOT obligated to give him as much speech therapy as he needs to reach his full potential, they do not have to help him maximize ANY potential to its fullest, they only have to offer him access to a basic floor of opportunity. Find a therapist, get him weekly speech therapy, and do the homework dilligently to make your dollar go as far as it will go. The sooner you start, the better the outcome.
Explore sign langauge, it will help him with his frustration. Find some simple signs on the internet and start using them yourself, he will pick them up too and once he can comunicate, he may be less destructive. Another tip that I got from a preschool special ed teacher for our nonverbal daughter was to tell her what I wanted her to do instead of what to stop doing. They are not at a developmental stage where they can flip what you say and do the oposite, it really does help them.
If the Ritalin helps him, use it. It is one of the most tested medications there is. Drug therapy for the symptoms children with developmental issues suffer (and the DO SUFFER) can be releived effectively with medication. There is absolutly no credible evidence that any of the diets, suplements, or other "cures" work, but if you choose to try them, do not abandon standard therapy. Any one anecdotal story about someone whose child improved with these things is not helpful to you at all, so try not to listen to anything other than double blind, repeatable studies done by repuatable researchers. Your son does not have time to waste on false hope, and although traditional treatment will not offer you flashy results or cures, your son will make real progress which you will learn to value in time.
Therapy, medication, and special education will have a measurable impact on his condition, no matter what the diagnosis turns out to be. Emotional disorders, toruettes, ADHD, ASD (autistic spectrim disorder) etc, all have the same treatment protocal, you treat the symptoms that you see and you offer theraputic interventions and educational solutions to target specific needs.
Call the county MRDD board and find out what evaluations you need to have to get him on their lists, do what ever it takes, if the lack of diagnosis is a problem, try to get him a diagnosis that will quailfy him, even if you have to change it later, and you probably will anyway. Once he qualifies and has a case worker he will be eligible for respit service; they will send a qualified care giver to your home for several hours a week to give you a break. You will need this. He can have a "noncategorical" lable once he enters the public school system at age 3 until he reaches school aged service (grade 1) and this may be enough for MRDD. Check with them and get the process started.
I wish you the best, it is a hard road. You did nothing wrong, sometimes it just happens. I would also suggest that you ask your doctor to test him for Fragile X syndrome, this is one of the possible disorders that could be ruled in or out with a blood test.
M.
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E.M. answers from Evansville on April 21, 2008
I was a bit hesitant to add my comment because the experience I have to share is not mine, but secondhand. However, here goes. A friend of mine and her husband, both doctors, began to realise that their two-year-old son's behaviour was not normal for a child of his age. He did not speak (neither German nor English - they are bilingual), he would go into screaming fits and strike out when he did not get his way, he was unusually active, and his attention span was either very short, or bizarrely long. They researched and read many books on the subject of reversing autism, and decided to take drastic steps. They changed his diet completely, following a completely sugar-free diet. (Those with autism and ADD/ADHD apparently cannot metabolise sugar properly) They also employed a special needs teacher to homeschool him from the age of 2 1/2. After 2 years of this, he joined his local nursery at the age of 4 1/2, his behaviour totally changed; he spoke, acted up much less, and was more than capable of keeping up with his peers. The only precaution they take today is to ensure that his diet is completely sugar-free. They are aware of other parents who had the special needs teacher for their child, but did not follow the diet, and their child did not experience the same reversal of symptoms. I think you could probably study the reversal of autism/ADD/ADHD online. Also, I should stress that my friends did this without a diagnosis from a pediatrician or specialist; however, they were doctors themselves. You may want to have that diagnosis first before you try a radical education/diet approach.
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K.S. answers from Columbus on April 22, 2008
It sounds like you've received a LOT of great advice. One thing I have to caution on is that someone suggested that you are treating your kids differently. Even negative attention is attention. That may be true, but children ARE different & will be treated differently. PLease don't think that you are doing anything wrong.
That said, someone also suggested a referral to Childrens for a development assessment. Great idea. When my sone was 3 1/2, a doctor told me he wasn't speaking well enough. I actually wasn't aware of it. We understood him. The doc told us that on average, outsiders should be able to understand a 2 year old at least 50% of the time, a 3yr old 75% & at 4 typically 100% of the time. Ben was not near that at all. He sent us to Childrens. He does have a developmental delay & went for speech & OT only once a week, but we did notice a change. He is now 5 & is a special needs pre-school thru the public school system. At first, the hospital thought we should try the MRDD. They told us that they don't take children over 3 1/2. That left us out. For other reasons, we had Caresource. So, insurance was not the issue. That also might be something to look into. Remember, the earlier you get with the hopsital the better. There was an almost 6 month waiting list for us.
I, too, would be reluctant to use meds without a definitive diagnosis. I do remember watching Jenny McCarthy on Oprah once about her son who has ADD, I think. She talk about the diet change. That really might be something to also look into. There would be no reason not to try it. You don't need a diagnosis for that. Yes, I think that it was pretty radical, but what can a diet change hurt.
Please, keep in mind that this has nothing to do with any thing that you did or didn't do. You have no control over anything that may be going on in his little brain. Also, one thing that works for our son, is that when he gets upset over something, I start to talk softer. For me, it works two fold. It actually helps me calm down, and helps him calm down. Then, he can tell me whats wrong. Good luck. Keep after the doctors until you get some real help.
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J.D. answers from Cincinnati on April 21, 2008
My son has the exact same thing. He is 8 and non-verbal. I went through the same things at 2. he is still to this day hitting, screaming and pushing. He has been diagnosed with a creatine deficiency and non-verbal apraxia. This was found on an MRI. It all started from a seizure so a CT SCAN was done and nothing turned up. He also had an EKG, ECG and something else. They did the MRI and found a low level of Creatin. He was on supplements for a year and had a follow-up MRI every 6 weeks. I was told he does not have autism but has some characteristics of Autism
Find something for him to do like help around the house or have him put something away or get you anything. Then give him extreme high praise. He may be seeking attention from you so find something he really likes and play. My son loves therapy balls so we will play an hour on those every day. I make silly noises and stuff. Sometimes I chase him around the house or act like a complete goof ball. With extreme meltdowns I give him tight hugs but not smothering or dump bean bag chairs on top of him. My son likes pressure or being squished.
I get the insurance thing. I was covered for 3 years and now they say no its a developmental delay. Its not and I'm sure your son does not have a developmental delay.
You are not a failure. I understand how you feel. You need an hour a day by yourself. Its not easy but you will get through this.
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K.J. answers from Cleveland on April 21, 2008
My son is loud, my son is hard-headed my dau get the jest of what is expected. I've been married 22yrs... Your son is inquisitive,.machanical, maybe scienctific... You'll never know if you have looked at him manterial and not faternal two things you must do... praise him for his accomplishiment like their brand new and not an comparison.
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