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PPL who just don't understand
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Trinitysmom Offline
Newbie

Posts: 3
Joined: Jul 2011
#11
RE: PPL who just don't understand

My daughter is 4 diagnosed w/ spd 2 yrs ago and I read alot and hear routine routine ................... but she fights me on everything from meds to lotion to dressing to brushing of the teeth to getting on the school bus evrything so I have to say I just go w/ it as a single mother it is exhausting and i'm not sure how to implement a routine >? thoughts ? and thses last few mo I see so mnay signs of ocd which I have read can be part of spd . Also I have recently lost my job of 10 yrs due to there were sending us home to work and there is now way I could work at home w/ her is there any resources out there as far as grants for ot and diff therapies ?
All ideas are welcome ! Thanks
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knofskia Offline
Newbie

Posts: 7
Joined: Jan 2012
#12
RE: PPL who just don't understand

I know what your son is going through; I remember what it felt like. I still feel like that sometime. It feels like your body won't work right, can't work right. It feels like the people around you expect you to be normal, to be perfect. You try to be perfect for them. You try to make your body work, by pleading, by bribing, and, finally, by pure force of will. You hope that you can use your anger and frustration against the SPD, to finally beat it. But, without the right tools, that anger can't beat the SPD and, if we fight too hard, the anger loses focus and we hurt someone around us, verbally or physically. We don't mean it; most of the time, we don't even understand it.

The best thing is to understand, and help your son to understand, that we have limits. Sometimes, we can't do something; sometimes, we just can't do it right now. But, if we take care of ourselves with good nutrition, exercise, and sensory diets, we can have more better days.
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LynnNBoys Offline
Regular

Posts: 277
Joined: Dec 2010
#13
RE: PPL who just don't understand

(07-10-2011, 12:33 PM)Trinitysmom Wrote: My daughter is 4 diagnosed w/ spd 2 yrs ago and I read alot and hear routine routine ................... but she fights me on everything from meds to lotion to dressing to brushing of the teeth to getting on the school bus evrything so I have to say I just go w/ it as a single mother it is exhausting and i'm not sure how to implement a routine >? thoughts ? and thses last few mo I see so mnay signs of ocd which I have read can be part of spd . Also I have recently lost my job of 10 yrs due to there were sending us home to work and there is now way I could work at home w/ her is there any resources out there as far as grants for ot and diff therapies ?
All ideas are welcome ! Thanks

Yes, routine is very important for most SPD kids! One way to implement a routine is to tell her that you are going to do A, B, then C. Then do A, B, C. Even before we knew about SPD we had a bedtime routine. It's always been pajamas, brush teeth, go potty (once potty trained), read books, then tuck into bed. Or bath nights, it was bath, pajamas, brush teeth, go potty, read books, then bed. We reinforce this by telling them exactly those words. "in 10 minutes, we're going upstairs to get pajamas on, brush your teeth, go potty, read books, then bed." Over the years, it gets easier because we've done the same thing for so long.

We have a routine for school day mornings too. They have to be all dressed before they go downstairs for breakfast. Etc. I struggle to have routines during school breaks. And there are a lot more meltdowns because of it. I notice on the weekends that my older son asks me repeatedly, "So what are we doing today? What are our plans today?" He does better if I give him a rundown of things we'll be doing. If something comes up unexpectedly, he has a meltdown and says "But you said we're doing X!". So I try to stick to what I say. Or I tell him repeatedly if something might change.

If she's fighting you on it, maybe work out with her the order you and she will do things, then stick to it. Even write it down. Or we had a visual schedule posted in their rooms for them before they could read. Pictures of pajamas, one of someone brushing his teeth, clip art of a toilet, etc. They could look at that if they forgot what was next. And it reinforced what was expected of them.

My older son is a by-books, follow-the-rules kid, so it was easy to get him to do the routine. My younger son is more stubborn, but we tell him it's the rule and he has to follow it.

The key is to be as consistent as possible.
Lynn Shy
mom to 2 boys, one avoider and one seeker
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Marci Offline
Regular

Posts: 88
Joined: Jul 2011
#14
RE: PPL who just don't understand

We have had days just like the OP's, when somebody who just doesn't get it triggers my son and the whole day is hell for us both.

That being said, since he started on Omega fatty acid treatments, we have had ZERO meltdowns. In the 3 months prior to that, the meltdowns were getting more frequent and more intense by the day. But neurologist we're seeing now has my son on a supplements regimen that has made HUGE differences in his coping skills.

Sometimes gentle, appropriate nutrition therapy can do what the most loving parent can not. We can not change the connections in the brain that misfire and cause our kids to lack the skills to cope with certain situations; these kids are just chemically different through no fault of anyone's.

Have you been able to consult a neurologist or developmental pediatrician to see if any type of supplements might help?
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Sirena Offline
Newbie

Posts: 9
Joined: Nov 2012
#15
RE: PPL who just don't understand

I wonder if having a "overload" plan in place that could be clearly "written up" and discussed with Mom and family. Kind of like a management plan for diabetes or asthma. You wouldn't tell your asthmatic kid who was starting to wheeze to "just get a grip" nor can a kid flooded with neurotransmitter or cortisol can't really "turn it off" just like that. But perhaps if you create a 5 or 10 point scale of "arousal" with your kid and check in frequently during the day to say "what number are you at" and link the numbers with appropriate soothing interventions, then he eventually might be able to self advocate and articulate his needs and you could have a tool to say-"this is how we are going to handle this situation." Hope this helps! By the way, I have Lupus and the extra stress of spd at home is rough-I can relate to just not having the energy & responsiveness to deal as we would like some days. Hugs!
Sirena
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kath2740 Offline
Newbie

Posts: 9
Joined: Sep 2012
#16
RE: PPL who just don't understand

This sounds so familiar! It can be so frustrating to you and him both when a close family member does not understand or accept the diagnosis and limitations. I have been in this situation many times with my DS 3, a SPD seeker. I get especially on edge if I know DS2 is sleeping and I am trying to prevent a meltdown from waking little brother up. It can be difficult with another family member is interacting with him because you want them to have their own dynamic, but you also should feel like you can step in when you see DS is starting to meltdown even if it causes friction with your mom. I have gotten into major arguments with my DH and my own mother over this, and the ways I respond to DS. Have you shown you mother any information on SPD? Would she be receptive to it? Sensational Kids has a checklist that is easy to read for subtypes that may explain more about your child, and why you do what you do to your mother. She should respect your reason for stopping the interaction and method of calming DS, even if she does not agree because YOU are his parent. Polite, but firm can be difficult to achieve! Then again, even if you try to explain, she may not be open to it (my DH is not, and my mother does not understand).
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#17
RE: PPL who just don't understand

We have found immediate intervention is the key to putting the meltdown to rest before it explodes. I was recently dropping of my daughter (5) at day care, and within one minute of arriving, she threw herself on the floor, started banging her head and screaming. It was caused by something small, which I can't even remember now. I picked her up and put her under arm (no small task with a nearly 50 lb. angry kid), carried her back to the car, took her home and called out of work for the morning. I knew if I left her in that condition, the whole day would be hell for everyone--day care, school, our family. She was fine after about 10 minutes of squeezing and rocking. We had a good morning and after I put her on the bus for kindergarten, I went to work. My recommendation would be to remove him to a quiet place with just you and him, where you can pull out your sensory "tool box" and use your tools until he gets back under control. I'm betting you are the only one who truly knows what will work, and although it's nice to have a helper sometimes, in meltdown situations, mom is usually the one who has to address it. When my daughter is with daddy, he is strong enough to just pick her up and hold her really tight until he feels her relax. Then he gives her a snack and they go outside to swing or monkey bars or run for about a half hour. It certainly isn't for the faint of heart, though, and not everyone can call out of work or spend 45 minutes of their day totally focused on calming their child down.
My second recommendation is to read the book Effective Parenting for the Hard-To-Manage Child. It is really helping our family with managing our SPD girl's behavior.
My third recommendation is to investigate dietary changes. We began the Feingold Diet (feingold.org) a month ago, and meltdowns are rare now, and when they do happen, they're over in a couple of minutes. The one mentioned above was a week before we started Feingold.
I hope this helps. You're doing a great job! Only you know in your heart of hearts what will work best for your kiddo.
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heather40 Offline
Busy bodys
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Posts: 210
Joined: Sep 2012
#18
RE: PPL who just don't understand

Ok, first YOU ARE NOT A BAD MOM! Learn from this... YOU make the rules for your child, YOU know what he needs an dwhen he needs it! Your mother is not to dictate what you know your child needs. I would have asked her to leave! I am totally serious! She first off should not have put her hand on his mouth, that amplifies the problem! He was obviously getting frustrated reading and needed a break! She does not understand any of this yet. If you can find a workshop that you and her can go to, I HIGHLY suggest taking her to it. I made it clear to my family and inlaws at the time that I make the decisions regarding my children, then when Logan came along with all his SPD issues I became even more strict about my kids. If you do not understand the issue stay the hell away! You are not going to make my child's life miserable or ruin his day because of your ignorance! I'm sorry but there is nothing that upsets me more than people who want to ignore what is smacking them in the face! You are probably a much more reserved person than I am, and the next time you know he needs his chewy, your mom says no, you go get it give it to your son, have him go where he needs to go and take your mother off to the side and tell her; I am sorry that you won't take the time to understand your grandson's problem, but I do know what he needs to help him. (Sorry that is about as nice as I can get)You said she watches him for you, how does she deal with his meltdowns when you are not there? You are a great mom, you know your child, you knew what he needed, you had that one moment that I bet you will never let happen again. The next time put her in her place and she will eventually learn! I am sorry but that makes me mad, I know she is your mother, but it is just people in general, I see it all the time at work. I sub in a school dist and they have kids with SPD in behavioral classrooms and expect them to sit still nad not talk! I am actually going back to a school today that I subbed at and bringing them fidget toys that I bought for them! They are being punished for behaviors they CANNOT control! They will never feel successful if they do not get the help they need! One kid gets punished for having an outburst, but he then gets right back on task! He needs to hop all the way to the bathroom and he gets yelled at for not walking in the hall! I took him then and had him hop all the way there and back! Uneducated people teaching children with special needs who do NOT know how to handle them! EDUCATE EDUCATE EDUCATE! It is the only way we are ever going to change the way these SPD kids are viewed! Ok, sorry I will get off my soap box now! Have a great day!
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