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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

struggling......

Posted by on Dec. 4, 2012 at 3:19 PM
  • 13 Replies
My son is 2 and has aspergers but i guess soon i just will have to say autistic soo confusing. But any way. He receives therapy right now thro early intervention. The service coor said oh he's smart and cut his therapy to 1 hr 1x a week. All my sons drs and therapist are furious and i feel like Im at war begging trying to get my son help. This is all so need to me. Im a good mom but i need help. Its exhausting dealing with my son. Just changing his diaper is a process that i have to follow to avoid him physically becoming aggressive and melting down. He has to have a bag of horses whenever we walk in the door (obsessed with horses) again to avoid outburst. Transition and sensory is a huge thing for him and Im trying to learn how he feels and how he thinks. He slapped me today...pointed to where he slapped me and said boo boo u cry baby. Seriously? My husband works all the time which leaves me with our son...dealing with therapy the drs the every day home stuff and today i feel like i have no more fight left. Its horrible i didn't even want to put up a xmas tree i knew my son would just grab and eat it. And according to his therapists i shouldn't say no to him i should get his attention other places. Giving him a chew toy or ignore him when he punches himself or the dog. Its over whelming. Does anyone else deal with this or feel like i do sometimes. I feel like a bad mom i just want to go to bed and put the covers over my head and sleep.
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by on Dec. 4, 2012 at 3:19 PM
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lucasmadre
by Kari on Dec. 4, 2012 at 4:11 PM
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So many of the things that have you upset today we have all been through. My son is aspergers too (too bad, I am not going to stop using the term) but he is 8 now and we have different challenges but it isn't like it is when they are small. You can't reason with any two year old and a two year old with aspergers...well, forget it. 

I promise, it will get better, then it will get hard again, but then better... back and forth. Try not to loose hope and faith. Do things for yourself to refuel, if people around you don't get it see if you can find another mom near by with a child like yours. It helps to be understood (at least for me.)

Just because your son has aspergers doesn't mean he doesn't understand time out. Bad behavior is bad behavior. If he slaps you again put him on a step and keep doing it until he stays (it takes a while I know.) They need and want limitations just like all kids. I know the "meltdowns" are incredibly exhausting. I remember crying myself to sleep, I remember having my feelings hurt (and still do) but it gets easier as you start to understand how their mind works and stop taking it so personally... they are not trying to hurt you.

I can remember locking myself in the bathroom for a minute just to have a time out for myself and I know how you feel when you say you want to crawl into bed and pull the covers over your head. They do outgrow the terrible outburst, that is partly being two. You are not a bad mom or you wouldn't be trying so hard to get him help. Let yourself have a bad day, it happens. Start over tomorrow and after the little demon falls asleep tonight go in and kiss him on the quiet forehead and take a long hot bath (or whatever works for you) and crawl in bed and pull those covers up over your head, you deserve it!

Stay in touch, this can be a great place for support. Good luck and don't forget you are a good mom and it is a tough job.  xo 

charley31
by Bronze Member on Dec. 4, 2012 at 4:21 PM
Thank you soo much for what you said. It made me cry...in a good way tho. I truly appreciate the advice and kind words.


Quoting lucasmadre:

So many of the things that have you upset today we have all been through. My son is aspergers too (too bad, I am not going to stop using the term) but he is 8 now and we have different challenges but it isn't like it is when they are small. You can't reason with any two year old and a two year old with aspergers...well, forget it. 

I promise, it will get better, then it will get hard again, but then better... back and forth. Try not to loose hope and faith. Do things for yourself to refuel, if people around you don't get it see if you can find another mom near by with a child like yours. It helps to be understood (at least for me.)

Just because your son has aspergers doesn't mean he doesn't understand time out. Bad behavior is bad behavior. If he slaps you again put him on a step and keep doing it until he stays (it takes a while I know.) They need and want limitations just like all kids. I know the "meltdowns" are incredibly exhausting. I remember crying myself to sleep, I remember having my feelings hurt (and still do) but it gets easier as you start to understand how their mind works and stop taking it so personally... they are not trying to hurt you.

I can remember locking myself in the bathroom for a minute just to have a time out for myself and I know how you feel when you say you want to crawl into bed and pull the covers over your head. They do outgrow the terrible outburst, that is partly being two. You are not a bad mom or you wouldn't be trying so hard to get him help. Let yourself have a bad day, it happens. Start over tomorrow and after the little demon falls asleep tonight go in and kiss him on the quiet forehead and take a long hot bath (or whatever works for you) and crawl in bed and pull those covers up over your head, you deserve it!

Stay in touch, this can be a great place for support. Good luck and don't forget you are a good mom and it is a tough job.  xo 


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TheJerseyGirl
by Michele on Dec. 4, 2012 at 8:31 PM
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My son has never been a behavior problem but trust me when I say we all have bad days... Sometimes too many! I can promise you that with therapy and routine he will get so much better. I know it isn't easy!!
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mjunieb
by on Dec. 4, 2012 at 10:27 PM

Is there an Applied Behavior Analysis program in your area? That is the best program for his behavior issues I have found. They can be expensive, but they will help train him how to control his behavior and they are covered by insurance in many cases.

There is a PC/Mac program www.behaviorbreakthroughs.com/ that is available at Amazon. There is a trail available on the iPad-Level 1. It teaches how to react to melt downs, when to reward, how effective your choices are, etc.

Rewards are given when a child does something right i.e. starts to swing but stops before contact. Bribes are offered before the child reacts, make your bed and I'll give you a cookie. The child has to really want the reward. It should be special not something you give all the time or it looses its appeal.

Block his hits gently, catch his hand or push it away. Don't allow him to hit if at all possible. They used to have small plastic punching bags with sand in the bottom for kids when mine were little. Maybe you can find one for him punch. My oldest would throw pillows and nerf balls as well as hit the filing cabinet that had is magnets on it. He loved the sound of them all falling off after he hit it.

Get him a communication system. If he doesn't talk, use sign or PECS the picture exchange communication system. The iPad has a program called Proloquo2Go that has preset icons and you can add pictures, folders, etc. iPads and the program are expensive, but I have seen it in action with very young children it can work.

Do you only have the one child? How big is your dog? Your therapists are trying to help, but they don't have to live with your child. You will learn to try to say no without setting him off. It will take time. What they are suggesting is changing the way you distract him. I doesn't always work, but it is another way to change his focus. Children on the spectrum seem to have a strong sense of stress in other people. I have heard that our scent changes when we are stress, mad, etc. There is a chance that with their sensory differences the children are able to pick up this changes. They always know when we are stressed and react. They don't know how to act or assess what is wrong so they scream, hit out, whatever their normal stress reaction is. Life is very unstable and it takes a lot of work to deal with our special children. Just remember that all parents are driven nuts by their children. (I had a hispanic friend that screamed at her daughter for lightening her hair while my son colored his neon blue and green.) You will be blamed for not discipling your child, but all you can do is your best. Make sure you get your family and friends well studied on autism so you get as much information to them as possible. You need a support system either your present family and friends or people who understand autism. Your child can't change himself nor can you, you need to help people understand what you are going through and how they can help you and your child.

Good Luck. Stay in contact with the CafeMoms, you can vent and ask for help here.

kajira
by Emma on Dec. 5, 2012 at 4:03 AM

I went through this when my son was a toddler - only didn't have any help or support because no one would believe me when I described my son's horrible meltdowns, aggressive behaviors, and screaming.

I was told it was my fault because I was "parenting" him wrong... all the tools everyone ever suggested or gave me for redirection work on my NT child - If I would have had her first, OMG would I have pushed and pushed and pushed for it to have been recongnized earlier.

I do understand. My husband didn't understand until he changed careers when our son was 7 and I started video taping our son's meltdowns and asking him to find a solution, that I don't care what anyone else saw in my son, I saw a kid who had some problems and needed help. After being in school, we had enough evidence of behavioral issues despite normal mainstream and a normal IQ and him being academically fine with a normal life and no trauma that we finally were able to get him diagnosed with autism.


I want to say it gets easier and in some ways it does and in other ways, it gets harder, because when some things work themselves out, new things come up. It's a journey, and it's a long one, but it will usually be worth all the hard work in the long run.... (and not that I suggest this, but the only time my son actually hurt me, I bit him back to show him how it felt and said I promise to never bite you again if you agree to not bite me again.... and he didn't bite me again as a toddler.) Sometimes, showing them how stuff feels and explaining WHY you don't do it.... helps. at 2, they may not understand, so i'd just protect yourself and work on distracting and trying to reward the behaviors you want.... my son though, he was ahead at that age communication wise, he didn't regress/stop progressing until he was a little older. he had abnormal speech development in the opposite way, he started talking at 4 months.

We homeschool and are very hands on. dad works a shift where he's home all day and works when the kids aer sleeping, allowing us to have 2 people here to work with our son every day and handle things as a team instead of a solo parent.

That was the biggest key to making our life more functional for everyone involved. I couldn't do it alone. It took so much out of me, I had nothing left to give at the end of the day to anyone else, even myself.


And - I just want to say, that it took a long time for our son to understand reward/sticker charts. he's 9 in a couple months and he JUST NOW gets the concept of earning rewards with it.

We use positive reinforcements, but if we don't also have consquences that make sense for the situation, he expects a reward every single time and will meltdown. So, we have to carefully balance rewards, and try to use praise and normal things he enjoys. We found that expecting school work to be done before the bins of legos could be taken out, really helped make life easier - it's not that his lego's are the special reward - it's just that if he wants to do what he wants to do, he has to cooperate at least on some stuff.

Chores and schoolwork come first, and we make sure if things are stressful and change, we cut him some slack, and explain why. That we acknowledge when he's stressed out, and he can't use it as an excuse.

our son is smart, he knows how to manipulate, he will use things as an excuse not to do them if we give an inch, we have to stay on our toes and make sure he knows we have boundaries, even if we support him and work with his quirks. We are clear that he has to work and compromise with us too if he wants us to take everything into consideration in regards to us.

If he goes out of his way to treat us like crap, we aren't going to do *anything* special for him when he's being mean and won't even try to explain it to us. We expect communication to explain things - we can't help if we don't know.

our son is verbal though.... 

And the thing is, I didn't treat him any different than his sister is as a toddler, and I can tell you, that raising a NT child compared to him.... has never made me want to just sit in a ball and cry compared to what he put me through.

but I survived it. and you will too and in a few years, you'll look back and realize how tough you were and that you had more inner strength than you even knew.


and - one very last thought - Every autistic child will be different. You really have to custom tailor things to fit your family, and your child. there's not one mold that works for every kid or every situation... and as an autistic adult myself, I can tell you that some things just come with age too.

Just because he doesn't get it at 3... or 5... doesn't mean he won't figure it out by 9 or 12.

Living with Autism - The quirky kitty.

Our autistic Family - A Dad's point of view on living with Autism

gotgrandkids
by on Dec. 5, 2012 at 7:38 AM

Charley,

It will get better.  It really will.  My Aspie granddaughter had early intervention -- five days a week for a year.  They performed miracles with her.  She is now in first grade, and brilliant in math and reading.  Fewer meltdowns, fewer obsessive behaviors, a happier kid.... and happier Mommy.

 But once a week -- are they kidding?  You need more support, lots of it.  Be the squeeky wheel!  There is no way either my daughter or I could have dealt with this child alone.  We are a tag team, and even then it's a lot to handle.  Take a deep breath.  Get online, call local social services, the board of ed, call autism support groups.  This is just the first step of a long trip.  And one day, you'll look back at this, be glad you did it for him and yourself.  What you have there is a fascinating mind, a deeply sensitive child who makes you see the world from an entirely different perspective. 

Basherte
by Silver Member on Dec. 5, 2012 at 11:50 AM

My son's pediatrician had me stop him from hitting himself or others, telling him owie... and trying to get him to do something else. 


So far it's working. emphasis on the ing of the word working. It's still a struggle. But he's getting there.


SandyLaxner
by Bronze Member on Dec. 5, 2012 at 11:59 AM

Hugs Mama!  For us,w/our 5yo ASD Ds it got better in some ways then worse in some ways.  Every day he surprises me as to how smart and funny he is.  You DO have to treat them differently than an NT kiddo bc ASD kiddos have different challenges(communication,social,sensory).  ABA was a godsend for our guy,but yes it is VERY expensive,some are lucky enough to have an ins that would cover it.  In early intervention,my DS had once a wk OT,ST and Developmental therapy,1 hr each.  And he was 50% behind in development at that time.  I also did private ST and OT,and a gym class,so we were busy enough,then at age 3 he went into the school system for special ed preschool 10hrs a week and Mama got her naps in!

lucasmadre
by Kari on Dec. 6, 2012 at 9:29 PM
1 mom liked this

Hi Again "charly31, just checking in on you. I hope today was a better day but if it wasn't don't give up. It will come. If it makes you feel less alone I had a bad day today. Crying in the car (my favorite time to cry...lets face it, my only time to cry :) anyway, you are not alone. We all have days where it feel too hard, too long, too scary, too much. 

Try to remember that the reason it is so hard is because we love them so much. If you didn't, it wouldn't hurt like it does. Celebrate your little victories when they come and you will have them- trust me and never forget that you are in charge...just think of what a strong and smart woman you will be from all that you are experiencing.

XO  Kari

charley31
by Bronze Member on Dec. 6, 2012 at 10:12 PM
Hi there "lucasmadre". i am soo sorry you had a rough day and i too cry in the car. What happened today. If you want we can be "friends" and message eachother. Your message made me smile.....someone is thinking of me. Yesterday was horrific for. He has started spitting in my face. He's so rough and mean to my dogs which i do not allow and Im constantly saving them. I feel like the dogs know tho...something is wrong/different with my son and they literally just put up with him. If i was dog i wouldve bit him by now or at least jumped the fence and ran away. Today was a bit better prob because it was my day to work at the animal shelter. I did get a call from his early intervention service coordinator and they agreed to reevaluate my son Mon since they cut his therapy in half. I wrote letters had all his drs/therapists write letters. Im the mom from hell. i really hope you're able to rest and maybe pull the covers over head. Im here if you need a friend
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