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Old 12-31-2012, 03:18 PM   #1
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How do you deal with the frustration?

How do you all deal with your frustration?

I feel like a horrible mom saying this, but the stress of dealing with my DS, Owen, is starting to wear on me. The boy won't eat, and it doesn't matter what I do or don't do, what I offer, how I present it - it nearly always disintigrates into him crying and me sad and frustrated. I make it fun, we stack foods, we have a good time playing with it, but he does NOT want to eat it. And no, he is not the kind of kid who would eat if he gets hungry, I waited him out for an entire week recently before I gave in and started spoon feeding him again (that is the only way he eats the little bit that he eats right now, if I distract him with something and put the spoon in his mouth). He eats no solid foods at all, just purees - and he is actually regressing to the point where his food can't even have ANY texture in it anymore or he will scream and melt down, whereas before I could get away with things like cracker crumbs and mashed peas with no problems. He has been in therapy for two years, and it just seems like he's going backwards instead of forwards. Not to mention that he hasn't gained almost any weight since he was 2, and he just turned 3 in November... I'm trying so hard not to show my frustration in front of him, because I know all that does is negatively reinforce his behavior, but gosh - it's so darn hard. I'm so worried because if I stopped feeding him, he'd stop eating. Simple as that.

Also, I just found out that my MIL, who watches the kids on the weekends, is not following through at all with Owen's therapy and it's like pulling teeth to get DH to participate, too. I just want to rip my hair out because I have zero help, no one who understands, and nothing seems to be helping...and unfortunately we can't just "wait it out", because, well...the kid has to eat or he'll end up hospitalized for dehydration (which has happened twice before). I don't know what is causing this recent deterioration, since he has legitimate medical, psychological, AND sensory issues that are all contributing. He is being evaluated next week for autism, but what they say isn't going to impact his current therapy since they are already trying everything they can as far as eating goes. Along with a lot of other unrelated family stress, I feel like I'm not in a good position to be helping him right now, but nevertheless it is up to me...so I really need to figure out how to alleviate my frustrations (not WITH him, just with the situation) before it further impacts his progress. Any suggestions?

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Old 12-31-2012, 04:00 PM   #2
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You feed a mommy's day out. I know this sounds cliche but this too shall pass. We all go through these feelings. Give yourself a break. You are doing everything in your power to help your child. There will be rough patches, regressions, moments where you wonder if you're doing the right thing, where you wonder if you're doing enough, where you feel like giving up. And that's ok. But I promise you'll get through it. Are there any local support groups you could join?

Also sounds like you need a 'come to Jesus' with MIL (and maybe DH). She needs to understand you are not just being "crazy" or "over protective" and she NEEDS to follow through with therapy if she's going to watch him. She needs to be part of the team, so to speak.
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Old 12-31-2012, 11:49 PM   #3
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Re: How do you deal with the frustration?

Hugs mama! Family therapy really helped us. It was "for" DS, but it was really helpful to me because someone listened to my frustrations, helped me process them, and helped us work on a plan to make things work for our family.

My mom is my daycare. She comes to every therapy appointment and every doctors appointment. She "buys in" to what we are doing because she comes. I would invite MIL to come to some therapy so she can see first hand what you are doing there. It really helps with the buy in and follow through at home.

Just wondering...have you considered an inpatient feeding clinic for DS? They can sometimes make major strides if you go inpatient for a week or two. There is one at Riley Children's Hospital in Indianapolis that is 5 days long, but I know there are even better ones out there. Kennedy Kreiger is supposed to be the best, but we haven't been there.
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Old 01-01-2013, 08:32 PM   #4
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Re: How do you deal with the frustration?

It helps me to keep track of where my son IS making gains. Even if it is usually a completely different area of development
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Old 01-01-2013, 11:29 PM   #5
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Re: How do you deal with the frustration?

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Originally Posted by mibarra View Post
You feed a mommy's day out. I know this sounds cliche but this too shall pass. We all go through these feelings. Give yourself a break. You are doing everything in your power to help your child. There will be rough patches, regressions, moments where you wonder if you're doing the right thing, where you wonder if you're doing enough, where you feel like giving up. And that's ok. But I promise you'll get through it. Are there any local support groups you could join?

Also sounds like you need a 'come to Jesus' with MIL (and maybe DH). She needs to understand you are not just being "crazy" or "over protective" and she NEEDS to follow through with therapy if she's going to watch him. She needs to be part of the team, so to speak.
The problem is, that this isn't just "a moment", this has been pretty much my son's whole life. No one can figure him out, or give us answers or solutions, and it's just really wearing on me. He will make a tiny improvement, and then fall back 4 or 5 steps. He has had actual medical specialists give up on him.

And as far as MIL goes, I have told her numerous times...this recent one was at Christmas, I did point it out and she just gave me some lame excuse and I dropped it because I didn't want to start a fuss on the holidays. She constantly tells me what I want to hear, but I know she isn't actually following through, so I'm at a loss. Talking to her obviously isn't helping, but I cannot afford to pay a sitter and the kids love their g'parents so I am stuck. I don't know what to do/say to MIL and DH to get them to understand how important this is... Pretty much every single person in my family, DH included, think Owen is just going to "outgrow" this and that someday he'll just be sitting at the table and say, "Hey, I want a hamburger!" and our problems will be overwith. Actually, I've even had two different doctors say the same thing. It is so aggravating.

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Originally Posted by luvsviola View Post
Hugs mama! Family therapy really helped us. It was "for" DS, but it was really helpful to me because someone listened to my frustrations, helped me process them, and helped us work on a plan to make things work for our family.

My mom is my daycare. She comes to every therapy appointment and every doctors appointment. She "buys in" to what we are doing because she comes. I would invite MIL to come to some therapy so she can see first hand what you are doing there. It really helps with the buy in and follow through at home.

Just wondering...have you considered an inpatient feeding clinic for DS? They can sometimes make major strides if you go inpatient for a week or two. There is one at Riley Children's Hospital in Indianapolis that is 5 days long, but I know there are even better ones out there. Kennedy Kreiger is supposed to be the best, but we haven't been there.
How do you find a family therapist? Is it just a general therapy, or is it medical-related? I wish my MIL could come to his therapy but she works two jobs during the week, so she is never available to come. I bring information for her to read, and I describe what we've been working on, and she says she'll do it - but like I said, I know she isn't following through, so what do I do? Part of the problem too is that one of my MIL's jobs is working with a severely disabled teenager who cannot feed himself (no muscle tone) so it's her job to do everything for him, and I think it's hard for her to seperate the two situations - she just falls into a routine of doing everything for Owen, too, instead of pushing him a little bit.

As far as the inpatient clinic - yes, we did have that offered to us. However, the clinic's method of treating kids was to set a timer and to essentially force-feed the child until the timer went off (if they didn't open their mouth, I was supposed to wipe the food on their lips to force them to lick it off). I was not at ALL comfortable with that method, since to me all it did was to train the kid to suffer until the bell went off instead of teaching them how to eat and enjoy mealtime. I was terrified of going through a week of that and what it would do to him, rather than for him. Have you been to an inpatient clinic with your DS? Do you know if either of those two you mentioned or any others do more of the food chaining approach?

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It helps me to keep track of where my son IS making gains. Even if it is usually a completely different area of development
I really need to remember this, thank you. He is a very smart kid and he has (thankfully) been pretty healthy this winter, which is unusual for him. I'm very happy about that part!
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Old 01-02-2013, 09:32 AM   #6
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Sorry it's so rough mama! I had to fight for 3 years to get a proper diagnosis on DD1. Once we got it figured out she just took off, but her issues were much less complicated. I'm so sorry you're struggling. It's terrible when doctors give up. I'm thinking there must be some specialist place, like the Shrine Hospital for clefts and orthopedics does, for feeding issues. Maybe a charity to help with costs.

99% of the time kids DON'T grow out of it. Sounds like MIL and DH are in denial. Does your therapist have any research to share that would help them?
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Old 01-04-2013, 08:13 AM   #7
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*hugs* feeding issues are the worst, everything else I manage with quite well, I can deal with the behavior problems I can cope with all the little stuff but I completely understand the helpless feeling when your child is effectively starving themselves. My DS lived on applesauce, yogurt and protein powder for years. Very few other foods and like you we tried waiting him out and he just lost a bunch of weight and got dehydrated. We have been through oral motor therapy, child and youth mental health, bribing, begging, screaming and crying and none of it really did a damn thing to help. Around the age of 5 things really did improve on their own and now he eats a variety of foods, mostly carbs and only things that can go smooth in his mouth and nothing crunchy but enough variety to keep him healthy. Every time he has had a serious regression or has stopped eating entirely it has been because of something stressful in his life completely unrelated to food. The most recent time it was actually because of something that was happening at school and once we addresses that he started to eat again so sometimes it helps to try and step away from the table and look at what else is going on in his world. We have almost had to resort to a feeding tube being placed a couple times. One thing that is working for us right now is squishy packs, I have refillable packs that are like squish ems or the baby food pouches and I'm able to purée a lot of nutrient dense foods together with fruit, omega oil and protein powder and he will drink them.

My MIL was in deep denial that there was anything wrong and so would really do very little to help with therapy so we just accepted that. I do therapy, DH does therapy when he can, my Mom will help with what she can and we work with professionals but when the kids are at Grandmas they are just kids and there is no therapy and that has worked for us, even when she was my full time daycare we just did more therapy in the evenings and on the weekends and let it be.

As for the frustration, I play roller derby. I take 2 hours a night twice a week to leave my house and my three kids (one SPD, ADD, PDD-NOS, one NT and one SPD, limited verbal, awaiting ASD assessment) the mess, the laundry, the dishes, everything strap on roller skates and smash into other woman on roller skates. There are 3 autism moms in my league, we all hit hard!
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Old 01-04-2013, 05:43 PM   #8
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Re: How do you deal with the frustration?

My 2nd son is a restrictive eater too. It is a behavioral disorder all of its own. My son has PDD NOS and it is part of it. He did not eat solid food till he was 2 1/2 and then only 1-4 select foods. Just do what you need to to keep him eating. You want him to not lose what little taste for solids that he has. Also add some pediasure or carnation instant breakfast to his diet if you can get him to drink it. It is very stressful to have a child who will eat only under certain very ridgid circumstances.

My son is nearly 5 and will eat pizza, burgers, and french fries. Yeah - fun. I can get him to sometimes eat clemintines, pop tarts, grapes, and yogurt. Just keep trying and do what you need to. Make sure to kick eveyone else in their butt!
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Old 01-04-2013, 05:47 PM   #9
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Re: How do you deal with the frustration?

Oh - my frustration is with DS3 who has ODD. He says no, does what you tell him not to do, refuses to listen, and no form of discipline works. I want to rip my hair out and DH is ready to kill him. All we do is say no and stop all day. You want to give happy thoughts and moments but they are hard to find. I try to give him one on one and time with mom that is cuddles and positive, but it is hard after you spend the day screaming at a child who just cannot listen. I actually at one point begged them to sedate him I was that desperate. I didn't of course. I just felt so alone and insane with this child.
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Old 01-08-2013, 11:05 AM   #10
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Oh I wish I could call some of you. My boy is amazingly smart but everything is a battle and it's getting worse. He refuses to eat unless it's mac n cheese, oranges, yogurt, or dry cereal. Every meal is a battle and I feel like I'm losing. Everyone says he's just a boy. And he'll outgrow this but he's getting worse! Idk what to do anymore. I'm all alone with 5 kids under 7 and I feel so lost.
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