Please help me with my autistic son...

[micah_mae_]

I am having a hard time. I'm depressed and anxious, bordering on self destructive. I constantly have thoughts of self injuring again, drinking, etc. But I have to hold it all together with a smile because if I break down, the whole family breaks down.

My son was diagnosed on Monday with classic autism. He's 2. His main symptom? Meltdowns. Here's something that happened earlier:

He had a meltdown at church and someone gave him a cookie, that worked like magic (of course) and we got him to the van. He fell asleep. When we got home I said "omg you have cookie all over your face" in a cheerful way. He started screaming "cookie!"

So I was like, well I guess he can have an oatmeal raisin one since he slept through lunch and I'm not in the mood to deal. Well guess what? It wasn't the right kind of cookie. He threw it down, threw himself down and screamed. I took him i...nto the kitchen to try to get him to tell me what he wants and he just screams. He bangs his body, head and hands onto the hard tile and screams. There is a puddle of tears and other less savory bodily fluids under his face. He injures himself as I sit holding him and squeezing him tight, trying to calm him down. I know some parents would say, just put him down and he'll calm down when you're not watching. No. No he won't. He physically can not calm himself down at that point. I carried him to the chair and put in a movie for him. He calms down immediately. The only way to calm him down is to turn his brain to mush. Is this what I'm in for for the rest of my life? Can I physically control a teenager doing this?

Plus it's affecting my marriage. My husband doesn't have the patience to deal with this. He walks around pissed off at life for giving him this family (I'm guessing) and I spend my time reprimanding him for how he deals with Corbin.

Please tell me what to do about the meltdowns, he has several a day..they are destroying our lives.

[NightOwlwithowlet]

If you have a therapist or counselor, call them immediately.  You need to get help for yourself.  You can't help your son, unless you take care of yourself first.  His diagnosis is still very new, it will take a while to process the diagnosis and learn to deal with it.  I'd be very gentle with yourself for the next few weeks.  If watching tv helps him calm down, it's okay in the short term.  It will not turn his brain to mush, but it may help you keep your sanity and help him calm down.  Is he getting EI?  Do you  have a social worker for him?  Is there anyone you can talk too IRL?      

[Emmeline II]

I'd pick up this book for your dh

Not My Boy!: A Father, A Son, and One Family's Journey ...

[micah_mae_]

Originally Posted by NightOwlwithowlet 

If you have a therapist or counselor, call them immediately.  You need to get help for yourself.  You can't help your son, unless you take care of yourself first.  His diagnosis is still very new, it will take a while to process the diagnosis and learn to deal with it.  I'd be very gentle with yourself for the next few weeks.  If watching tv helps him calm down, it's okay in the short term.  It will not turn his brain to mush, but it may help you keep your sanity and help him calm down.  Is he getting EI?  Do you  have a social worker for him?  Is there anyone you can talk too IRL?      

I don't have a therapist yet but I know I need one. I need to be on meds again, it's the only thing that helps as much as I know I need it to. We had a meeting with EI on Friday but our first "eval" is Jan 4th. I have "e-friends" and a couple IRL friends that I can talk to but it's hard. I'm not one to talk about feelings and I always tend to be the "strong" one.

Originally Posted by Emmeline II 

I'd pick up this book for your dh

Not My Boy!: A Father, A Son, and One Family's Journey ...

He probably won't read it. He has made it clear that he doesn't read and really just won't. It makes me so tired. I constantly have to tell him "kids with autism don't respond to that", "he has no way to understand that", etc.

[AnalogWife]

I agree, let him watch the tv at least for now, not all shows will throw his brain into mush, my DS gets interactive with Nick Jr's Puzzle Time and he learned most of his signs from sign language dvd's. 

RESPITE is a funded program for families such as yours, it's designed to give parents a break to keep them together. 

You could read the suggested book yourself and then work it into convos with your DH.  My DH also does not read books and he does not study ASD issues, but he does listen to me when present him the information.

Day by day, you did the right thing, you got the diagnosis and now you can get the services which WILL help. 

[NightOwlwithowlet]

When my son was little, DH had a very hard time dealing with his delays.  Now, I realize he had to process what was going on in his own way and at his time.  But, I felt very alone and felt like I had to figure it out on my own.  While DS had very limited receptive and expressive language when he was two, temper tantrums and pointing and grunting were his main forms of communication.  Television like "Dora", "Bob the builder", and nature videos and the Baby bumble bee videos were one of the ways he learned to talk.  I'm not sure why, but we'd sit cuddled up on the sofa and watch them together and one day, he pointed at the tv and said, "Look, it's a frog."  It was the first time he spoke in a sentence and by the end of the day he could name every animal in the video, about 10 or 12.   Not all tv is bad, especially if it helps you both.

I know this is a hard time for you, but ask for help from friends and family (if that is a possibility).  Find a therapist.  Some people swear by support groups, I found having even one friend with a kid with a disability makes all the difference.  If only because they understand your fears, concerns and wild ravings.  Take care of yourself. 

[bluebackpacks]

Originally Posted by AnalogWife 

RESPITE is a funded program for families such as yours, it's designed to give parents a break to keep them together. 

[beachcomber]

My heart goes out to you right now. First off, you're not alone in this. You have forums like this one where you can share your struggles and get support. It's not a hug or a day off, but it's a tiny light in the darkness. Also, you really need to look after your own physical and mental health. You can't be there for your son if you're having a nervous breakdown (which you're totally entitled to, by the way). Get meds if you need them to cope with all this chaos in your life. Try to get yourself out of the house at least once a week to a class or yoga or just to sit on a bench and stare at the trees. Do something - anything you can - to rejuvenate yourself. Your son needs a lot so you need to keep replenishing your own stores of energy.

He physically can not calm himself down at that point. I carried him to the chair and put in a movie for him. He calms down immediately. The only way to calm him down is to turn his brain to mush. Is this what I'm in for for the rest of my life? Can I physically control a teenager doing this?

Ok. This is very common in kids on the Spectrum. Most can't self regulate to calm themselves down. You are NOT rotting his brain to put him in front of a movie. You're breaking a pattern of self stimulation that's destructive. The very act of tantruming can be stimulating to kids at times. Once they start, they get so into it, they cant' stop. It's like spinning. Breaking the connection is good. No matter how you do it.

Also, he's 2. This is NOT going to be the rest of your or his life. Right now he's completely governed by the Autism. It's leading him and he doesn't have any of the skills or cognitive tools to change that. As he gets older, with ABA, social skills groups, lots of positive reinforcement, etc., etc., he may be able to - very probably will - learn to self regulate, to maintain control of his behaviors and to contain elements of the Autism. But it takes time. And a LOT of work on his part and yours. Hang on to that.

Regarding your husband. He needs support too. Can you find a support group for Dads in your area? He needs to go and talk to other dads about how they took the diagnosis. It's a lot to learn to live with. It's a lot of dreams to watch crumble and when you're in a place like "the terrible 2s" on the Spectrum, it can be scary because you can't look to the kid down the street for comparison. He needs social support and so do you.

[sbgrace]

I'm so sorry you're struggling so much right now. This age is tough, new diagnosis at any age is tough (even if it was expected hearing it is hard), autism alone is tough, meltdowns are horrible for everyone. You do need medication I think. How soon can you do that? You might also get numbers of crisis type lines you can call if needed. This is a hard time for a marriage. It took my husband a long time to figure out how to even sort of manage my son. He still tends to make things worse than better honestly and my son is almost 7 but it's better than it used to be. My husband has learned what he has learned from me rather than reading any book. But right now your husband is processing and grieving this too. He's grieving the child he expected, the family he expected, the marriage impacts. My husband was angry for a long time. Neither of us "got" that his anger was equivalent to my anxiety and tears for a long time. We're trying to repair now.

Your son's inability to self regulate is very common. My kiddo was a mess at that age. He has gotten better in time. There is more lag between instigating whatever and his meltdown. Things got better in that regard around four which I know sounds like a long time off but we survived and you will too. You might figure some things out faster than I did too. We have some time now to head it off so to speak. We've also learned that keeping my son's blood sugar stable and keeping him rested helps. We know what not to do or at least I do. But at that age it was really, really hard. There is nothing wrong with calming him with TV. You do what works. I never found anything to work with my son at that meltdown point for a long time. It was horrific. It's being able to distract his mind. I know that now. You're doing it with TV. In short, I don't feel that desperate sense of I can't go on like this anymore though. Time does help. It will help you too.

[StephandOwen]

That is such a hard age with any kiddo, it's unbelievably hard with a special needs kid. My ds has autism and is now 7. Ages 1-3 were hell for us (I was a single parent during that time too). Some days I look back on that time and wonder how in the world we survived it. I really don't know. 1 day at a time, I guess.

Around age 4 it started getting better. Now at age 7 we have a system worked out. It's not flawless, and we still have those meltdowns at times, but they are far fewer than they were at age 2. At age 2, the tv was one of our much needed resources too. There were times that the tv was the only thing that would calm him down (specifically- Thomas movies). I can tell you that, looking back, I don't regret using the tv at all. We needed it to help ds. As your son gets older you might try making a "calming area" for him. We did this for ds, but I think we started when he was 3. Maybe even 4. DS's calming area is his bedroom closet. The bottom of the closet is cleared out and we pile pillows and blankets in there. The walls have posters about the planets as well as glow in the dark stars. There are also glow in the dark planets hanging down. There are sensory toys in there as well as his body sox. We taught ds that when his world isn't going the way he wants and he starts melting down to go to his calming area. This helps him SO MUCH. It took a loooong time and lots of repetition (and sometimes I even carried him to his calming area- not forcing him in his closet but just helping him regain control of his body if he was being violent. 99% of the time once he got to his closet he would go in on his own and calm down), but he finally understands that he *needs* that time to calm down. It doesn't always work, but as time goes on he uses it on his own more and more. He actually sleeps in there quite often now because it helps him regulate his body and calm down enough to sleep at night.

[micah_mae_]

Thanks everyone for all the support...it is so good to know that I'm not alone and that many others have gone through this and made it through. I am taking notes for sure, a calming area would be really good for him I think, although the only place we can put one would be upstairs which would make it a bit more of a pain..

I'm honestly worried that one day DH is going to just say "you know what, I can't do it anymore" and leave...I never thought he would ever do that but he spends so much of his day frustrated. I almost want him to leave just because I want him to be happy.

I'm definitely getting on some meds ASAP. I'll see if my mw can prescribe something in the short term until I can get in to see someone..

Thanks again everyone, really..

Oh do any of y'all have book recommendations for grandparents, aunts/uncles, etc?

[nayma]

i'm going to echo the sentiment that 2 is just plain AWFUL!!!  like others have said, i look back and think, "i really, truly have no idea how we made it through that time intact."  it was the hardest time of my life, thus far.  my dd is 4 now, and though we certainly still have very difficult times, my shoulders don't feel like they're carrying an elephant anymore.  i remember coming on this board when my dd was your son's age, and people would say, "it'll get better."  i'd think, "i can't make it that long..."  in retrospect, i would have gotten on anti-depressants SO much sooner.  i convinced myself so many times that they wouldn't help.  i was wrong.  are they a magic bullet? - nope.  but they certainly help.  another thing that i think helped (with no side effects) was rhodiola - an herb recommended for energy, PPD, etc.  you can get it at whole foods- i'd ask your mw about it.

as far as grandparents, etc., i'd start with the movie "temple grandin."  imo, people are much more likely to sit through a 90 min movie, then dive into a new book.  hopefully the book can start a dialog, and inspire them to read a bit more.  i'll keep thinking on the titles. 

hang in there :).  xxxxx

[kme]

Let me echo what others have said and tell you that 2 is hard, espcially for kids on the spectrum.  At 2 my son was nonverbal and the only way he could communicate was to throw a fit.  I felt like I didn't know what to do with him most of the time.  I had a huge sense of failure.  But it will not always be this way.  My son is now 7 and completely different than how he was at 2.  Here's what has helped:

1.  EI - CRITICAL!  It is where he learned to communicate and get through the day

2.  Private speech and OT.  Most of my son's difficulties stem from sensory issues and OT can help greatly with that.  There are many other theapies that may help as well: ABA. RDI, Floortime.

I agree that letting him watch TV is OK.  My son used to watch a lot of Nick Jr type shows and loved Dora and Diego.  He was then interested in coloring books, story books, and games featuring the characters.  Then he watched a lot of Scooby Doo and again - books, games etc about Scooby Doo, then it was Spongebob, now it is Gooosebumps.  I don't necessarily think it is bad to let your kid watch TV if it calms him and it may even generate interest in other things like it did with my son.

A book I would recommend for you to read is "Overcoming Autism" by Koegel and LaZebnick.  It breaks down the symptoms of autism by chapter and gives advice on how to deal with each symptom.  Chapter 3 addresses meltdowns. I refer to this book a lot.

Hugs to you and please take care of yourself.  It is so hard when your child is first diagnosed and you feel completely adrift with no clue what to do.  That's what EI and other professionals are for. 

My husband takes little to no interest in learning about ASD.  I think it is hard for fathers to process it for some reason. 

Hugs to you and good luck.

[micah_mae_]

Thank you, it's nice to know that my hubby isn't the only one who acts that way and I'll look at that book!

[sbgrace]

I've been thinking about you and your post and I wanted to add something I'm not sure will help at all re: the marriage. But in retrospect I think a lot of my husband's anger and marriage issues were because all of my focus/energy/self was on my son and not my marriage because of the circumstances. Marriagebuilders.com website materials emphasizes that you have to spend time meeting each other's needs (website specifies the needs and the emphasis is on meeting the top one or two) to maintain a relationship. You have to spend time period. And with a special needs child, at least mine, time was what I didn't have. But I also didn't have the focus. I don't know how I would have done things differently as at the time I felt I was hard pressed to just survive. But in retrospect most marriages can't survive what I expected mine to survive. If, when you're on medication and feeling more stable, you and hubby can find a way to connect and meet each others needs in some measure I think it might help hubby's anger. That marriage builders site is very helpful. I don't know when my son was your son's age I would have been able to do it differently but maybe had we tried some of it I wouldn't be wading through the marital damage now.

[micah_mae_]

Originally Posted by sbgrace 

I've been thinking about you and your post and I wanted to add something I'm not sure will help at all re: the marriage. But in retrospect I think a lot of my husband's anger and marriage issues were because all of my focus/energy/self was on my son and not my marriage because of the circumstances. Marriagebuilders.com website materials emphasizes that you have to spend time meeting each other's needs (website specifies the needs and the emphasis is on meeting the top one or two) to maintain a relationship. You have to spend time period. And with a special needs child, at least mine, time was what I didn't have. But I also didn't have the focus. I don't know how I would have done things differently as at the time I felt I was hard pressed to just survive. But in retrospect most marriages can't survive what I expected mine to survive. If, when you're on medication and feeling more stable, you and hubby can find a way to connect and meet each others needs in some measure I think it might help hubby's anger. That marriage builders site is very helpful. I don't know when my son was your son's age I would have been able to do it differently but maybe had we tried some of it I wouldn't be wading through the marital damage now.

Thank you for this and for the website (I'll definitely check it out)..I realize that everything you say is true and we do definitely try. It's hard to spend time together because by the time he gets home I'm in a mad rush to get dinner on the stove and get the kid fed..then DH takes him upstairs and if he falls asleep while laying down with C I don't see him again that day. We have little time together.

[DaughterOfKali]

Try googling to see if there's an Autism Association; Autism Society of America; or Autism Alliance near you.  Some may have meetings, support groups, and classes/discussions. 

My heart goes out to you.  I remember when my son had massive meltdowns.  It was so awful.

[PNWmama]

To the OP, I just want to thank you so much for putting this out there...I've been feeling much the same way lately but don't quite have the courage or the energy to post my feelings.  So thank you for writing this post.  I've been having horrible angry feelings, am depressed, feel like a failure.  My son is a little older than yours and we got his ASD diagnosis six months ago, but it all still feels so new.  The advice you were given by the other posters has been so helpful to me.  I know now that I need to get help from a therapist so I can take care of myself. 

Hugs to you from a stranger :)

[micah_mae_]

Originally Posted by PNWmama 

To the OP, I just want to thank you so much for putting this out there...I've been feeling much the same way lately but don't quite have the courage or the energy to post my feelings.  So thank you for writing this post.  I've been having horrible angry feelings, am depressed, feel like a failure.  My son is a little older than yours and we got his ASD diagnosis six months ago, but it all still feels so new.  The advice you were given by the other posters has been so helpful to me.  I know now that I need to get help from a therapist so I can take care of myself. 

Hugs to you from a stranger :)

I'm so glad that this thread helped you too! Online is the only place I can release my feelings, it's so refreshing to get it all out. *hugs* If you want to vent and don't want to share with the world you can PM me..I know next to nothing about ASD at the moment but I know a lot about depression and anxiety.

[KIWIFRUIT417]

I have an autistic son and was dealing with the same problems as a mother. It was something almost unbearable when my little boy would smack his head into things and got knots, or throw himself into things and get bloody cuts. It is very hard to see your baby hurting themselves. We found a way to help our little man when we were researching ways to treat autism. It was really hard at first but then becomes easy. My todler had stomach problems too, and we started him on a gluten free and casein free diet and within the first day, his stomach calmed down, and within a week he had improved balance, and was talking a little and was making eye contact a little. Within 6 months, he had gone from at least 10 violent episodes of injuring himself a day, to 1 or 2 a week. We have kept him on the diet for over 2 years now, and have seen so much progress overall, that we think he will be a functioning adult when he grows up. His autism specialist is so impressed with his progress on the diet, that she asked for video footage of him, to encourage parents of autistic children to try it, when she hosted seminars about autism. When we tried the diet, it wasn't because doctors said to try it. It was because we were willing to try anything within reason, to help him, and it happened to work for us. It takes 6 months for gluten to leave the body, and if you try the diet, you should be sure the food he eats is gluten free or you won't see results , if it is going to work for him. A lot of information is availabe on the internet about it. Good luck, whatever you do.