Venting - I am sick of this

Katie - posted on 09/27/2012

Sorry, Shelly*****

and your child is really an Angel.



♥

Katie - posted on 09/27/2012

Shelley,

as shocking as your words may seem to some, i hope you do feel comfort in knowing you are not alone. I love my four year old daughter (diagnosed with pdd-nos at 14 months) but there are times that I just want to dissapear from this life. My daughters verbal stimming is OUT of control. It is enough to drive anyone crazy. Ivealways had tons of patience and thought I was an autism super mom too.. but recently, after starting a grueling SCD diet (specific carbohydrate diet) i am not so sure anymore. We have seen some positive changes but now its mainly her irritability and stimming that I just cant take!! Every whinny morning I just cant wait for that school bus to arrive. Her stimming consists of just "geegee" sounds over and over and over and over. Its all day.stress doesnt seem to trigger it. Its just non-stop. And my Desi is non-verbal. She has zero language so the repetitive babbling is just crazy much. I understand where the woman who said "at least your son can talk" totally. But i often wonder if words constantly babbled would bd worse. Im 3 months pregnant with second baby and i feel like my stress level is unhealthy.

i love my babygirl to death. She IS unique and very special. But, life is so very hard some days. Just keep your head up and remember, you are a saint. And your

Beth - posted on 04/15/2009

Yes, the head's up idea is a great one for me, too. Our son will say something and I'll remember what book or TV show he's quoting and then it won't seem that odd, or I'll be able to say, "Oh, you got that from "Little Bear"!" Or even ask who says it, and if it's inappropriate, I'm now able to say the classic, "Just because so and so says it doesn't mean you have to say it (especially 3,695 times!)." This includes things like "stupid" to really bad curse words that deserve automatic time outs.

Deidra - posted on 04/15/2009

Just joined, my thoughts and prayers are with you. Hope things are improving. Do you have him seeing an Occupational Therapist, they may be able to help.

Fiona - posted on 04/15/2009

Shelly, 

You must be at the end of your tether.  I hope the break this weekend does you some good.  I haven't been apart from my son since October 2008 and before that November 2007; both times weekends away visiting friends in NZ.  On my return each time I was pretty refreshed and ready to get back to 'real life' again.  So definitely a GREAT idea, this B&B!  Great hubby you have.

My own son has Asperger's and he stims a bit.  Mainly spins things, which drove his teachers at school crazy.  Not that it was disturbing anyone but you know....*sigh*. He also verbally stims a bit, but it's not too bad, mostly just when he starts thinking about his obsessions (two particular sci fi shows) - then it's all systems go and he's singing - literally singing - lines over and over again from some favourite episode!  He also physically stims in public, which is okay to an extent, but he's nearly 10 and is tall for his age so it's no longer cute to other people (mostly I think stuff 'em, but he still needs to learn social niceties).  He is now home-schooled so it's more noticeable as we're around each other so much.

I agree with the advice to try and reach your son when he starts stimming.  Is that possible at all for you?  I'm lucky in that I am a fan of the exact shows my son obsesses over, so at least I have a 'heads-up' and recognise what he's stimming.  Once I'm 'with him', he generally stops at my request.

Hang in there.

Fiona

Beth - posted on 04/14/2009

Yes, take care of yourself! Any sort of respite is good--an hour here and there as well as the big weekend spa things, and we all deserve it. Also dinner with friends, the date nights IF you can avoid talking about your kid all the time (which in our case usually brings up tension, since we don't walways see eye to eye.)

How old is your son? How verbal? Any chance he could learn the words to songs? Mine is high functioning PDD-NOS or Aspergers with ADHD and we've had a lot of fun singing together. Also, I've been able to stop his verbal stimming by either ignoring him when he wants my attention (now that he's 5 1/2, I can actually reason with him--and he's much more reachable now that he's on Adderall and, most recently, the controversial Risperdal which in his case is helping enormously, see Risperdal thread). But I'll say, "I'll talk to you when you're talking in Matthew's voice," and it will often reach him. Advice for others with kids more like mine, if not yours.

Or if he wants his bedtime songs and starts getting wound up and doing this, I've finally just said I won't sing until he stops. This, of course, comes after years of awful, frustrating, angry nights where he was not very verbal (less than 2 and later) and love driving us crazy. Much better now, finally.

Also, if he isn't doing anything but sitting and stimming, would it be safe to leave him in another room, door open, so you can get away from it for awhile? Or maybe you wear the Ipod and tune him out! These kids give us plenty to vent about--and, if we're lucky, plenty to love. Best of luck, Beth

Maria - posted on 04/14/2009

I don't know if you have read Louder than Words, I know a lot of people don't agree with her, but she said one thing that made perfect sense, buy an Ipod!! Of course, mine is a cheap MP3 player, but sometimes, you just need to block it out and get your work done! Also, does he take B vitamins, it is known to increase speech but also occasionally babbling and repetitive language. (or so I have heard) It did make my daughter babble a bit more and she became really fidgety, so much so she couldn't even rest at night and we took her off of it. I hope everything goes well for you! Enjoy your weekend off! Enjoy yourself!

Regina - posted on 03/25/2009

My son has had his bouts of verbal stimming. So I know how you feel. Let me first say that he cannot help it or control it so punishing him will only make the compulsion to do it worse. I used to complain about my son verbal stims until one mother (whose son was non verbal) said to me "at least he can talk, I would give anything to hear my son talk". I always think of that now, and it helps.

My son got better with this when we changed his diet and eliminated food allergies, perservatives and food dyes. He also had major yeast overgrowth in his gut so we treated that too and it helped tremendously. Yeast causes havoc for our childrena and always increases stimming. Now when he starts "scripting" I go up and ask him what he is talking about, it is usually about some show he watched or about something that happened at school. Then I just say well tell me all about it and I try for a moment to keep his eye contact and have him talk to me. Each time it gets better and better. I know it is tough, but don't give up. Try the diet and even try finding a DAN (defeat autism now doctor) Our's has helped us tremendously with our son!

Lynne - posted on 03/25/2009

Quoting Jaimie:

i feel so alone, my son has aspergers and theyre now looking into adhd, i feel like our world is collapsing around us, sometimes i feel like walking away and not come back, i wouldnt of course but i feel like i cant cope anymore, i just want to enjoy been with my son, he wont let me in to his world and it scares me that ill lose him to some other world

hi jamie im lynne we ve known our son was differant from the age of 2 before that he seemed like a perfectly normal little boy outgoing a loving full of life then almost over night he changed he was shy wouldnt talk to anyone even people he knew relatives his own dad its so hard cause on the outside theres no disability u carnt see any diff to any other child people think there rude and ignorant but there not they just cannot communicate in a way that we understand its hard from a parents point of veiw watching this normal looking person in front of u always actin so strange we still have no definate diagnosis at the min its social a communication disorder as they cannot tell for definate untill the age of 6 or 7 hes 6 now but u end up spending so much time in the house as they dont want to go anywhere a if he does an hour later he wants to go home again or he starts playin up so u get cut off from everyday things like talking to people as he carnt make freinds in a way other children do its heartbreaking to see im always here if u need a shoulder to cry on ok ill leave it with u keep ur chin up

Tamara - posted on 03/24/2009

I know where you're coming from, Shelly. My son verbally stims a lot too, although it's much better. It used to be all the time, in fact, the only time he verbalized was stimming. Most likely he's repeating movie or tv lines, I listen to my son closely to figure out which movie it is. If I can, then I'll throw in the next line, and it gets his attention, because then I'm on the same page as he is. Then we might have either a repeat of the lines I know, or he'll smile, and continue on, but to *me* instead of the air. Luckily, he's more verbally capable now, so if his verbal stimming is, say, at the supper table, I'll ask him a question that he's capable of answering, and it derails his movie train of thought. It's probably not a regression, he's replaced whatever he used to do with this new type of stimming. Like typical kids, they have stages, and they'll get over it. Punishing him will only increase his stress, and stress will only lead to stimming. Engage him, in whatever way he will engage. And if you really can't handle it, walk away, put your Ipod on, turn the stereo up, and let him go at it in peace. It's not wrong, it's who he is right now. In fact, that's how my son learned to talk.

Francie - posted on 03/24/2009

You give me a sense of perspective regarding my own son. His Asperger's Syndrome is not nearly as difficult as what you are going through, yet I feel some of the same anxieties - mostly exhaustion from having to fight the same battles over and over again. I hope that your son's therapist can help you with some ideas on how to help him transition his behavior - perhaps offering him a fidgit of some sort that he can play with or chew on when he feels stressed would help? I realize that it would be replacing one habit with another, but would probably be less stressful for you to deal with. I wish you all the best as you work through this. You're not a bad mother, just an exhausted one. Take care.

Jaimie - posted on 03/24/2009

i feel so alone, my son has aspergers and theyre now looking into adhd, i feel like our world is collapsing around us, sometimes i feel like walking away and not come back, i wouldnt of course but i feel like i cant cope anymore, i just want to enjoy been with my son, he wont let me in to his world and it scares me that ill lose him to some other world

Shannon - posted on 03/24/2009

I just want to scream sometimes too. I have also yelled at my son. Don't beat yourself up about it, you are human and can only take so much. My son (6 yr ASD) is so obsessive about things he will repeat them over and over for sometimes hours. It's enough to turn even the most patient person batty. I also struggle with my connection to him. Sometimes I feel like he is the sweetest boy in the world and I get a glimpse into his world and everything is good. Other times I feel like he is trapped in a world that I can't seem to penetrate. Just remember all you can do is try your best and love your child for who he is. Try to focus on the good things and just weather through the bad times. That's what I do. It works some days and not others. We have been given a gift. A challenging gift, yes but a gift. These special children are unique and wonderful in their own ways. I wouldn't change mine for anything. As mothers all we want is our children to find happiness. If my child is happy more often than not I feel I have accomplished a lot! I hope this helped you a little. YOU ARE NOT ALONE!!!!!!

Cindy - posted on 03/24/2009

Enjoy your time off. You deserve it and I'm sure you'll feel much better when you get home.

Shelly - posted on 03/24/2009

Thank you to everyone for their encouragement and advise. I needed it desperately. My husband bought me a gift certificate to a bed and breakfast spa and I never used it because I felt too guilty leaving. I reserved a room for this weekend and I am getting away. You all were right. I need to recharge my batteries. Thanks



As for diet he is already GFCF, Soy Free, Egg Free, Nitrate Free, Phenol Reduced, and Dye Free, Corn Free and nothing in the diet changed so I don't think it is that. But Thanks for the suggestion.

Lynne - posted on 03/24/2009

I don't know if this helps, but a couple of my son's behaviours have also driven me crazy. He used to make a high pitched moaning noise that used to completely stress me but it stopped as suddenly as it started and he has never done it since. I really hope that the same will be true of your son. I also wanted to comment that you are completely normal in your feelings about your boy; I think we have probably all felt utter despair and at times I have been scared that I hated my son (I don't!). Hang in there and remember, you are not alone. xx

Michelle - posted on 03/24/2009

Hi Shelly, I'm waiting to get a diagnosis for my daughter and I know how you feel. Some days I cant bear to interact cos I know it will be so exhausting and I then feel so guilty for feeling that way about my own child. My daughter does things in public that I find very embarrassing like twitching and whirling in the middle of supermarkets and pulling at her clothes, and daily life is sheer effort. I dont really have any advice except it sounds like you need some time away, even if its just to pop to the shop for a magazine and BREATHE. We all need to re-set our batteries at some point and you coould do with some kindly relative or neightbour giving you even an hour's peace for a bath or a cuppa. I hope things improve for you soon, or you find a way you can get through this period. Also, he's probably getting anxious and stressed about it and peopple noticing it which will make him do it even more. My daughter acts worse the more I lose my temper with her - its a vicious circle.Try to keep thinking that maybe it will stop as suddenly as it started. Get your baby photos out and re-connect with the joy he can also bring. Good luck x

Cindy - posted on 03/24/2009

I don't go through this with my son, but my prayers and thoughts are with you.

Marci - posted on 03/23/2009

I totally sympathize.  It seems like every time you seem to have a good handle on things a whole new challenge blows through the progress you have made.  I have felt the same way about my son and I hated myself for it.  The biggest challenge I have is giving myself a break and it is hard but important.  I found when I am at my calmest, I get through to my son better.  God bless you and I hope the new diet works better!

Mary Beth - posted on 03/23/2009

Hey Shelly,

 

So sorry to hear you are having such a rough time.  I encourage you that there are other solutions online for his diet.  If something changed 4 mo ago it is quite possible a food allergy or a reaction to food.  Autistic kids are extremely sensitive to food coloring, eggs, wheat (glutten).  There is sensory integration therapy that will also help a great deal.  My son has sensory integration disorder and the Occupational Therapist will be working with him shortly.  Finally get some counseling for the whole family and some well deserved breaks from your son.  I've been told I was being a marter by not leaving my sons with a sitter and getting away. 

 

I have taken the above steps and my son is greatly improved and I hope you will have the same results.  If not, don't stop looking for solutions.  They are out there, but they are so very hard to find when you feel all beat up.  So I'll be praying for you Shelly.  Put yourself in time out when you can't stand your son.  "Mommy has to go to her room for a time out and she can't talk to anyone."  Count to 10.  Forgive yourself, I can't stand my son when he is in his cycle either.  But deep down we both know we love them.  My  empathy is with you.  Mary Beth