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advice wanted
Author Message
Sunshine Offline
Newbie

Posts: 8
Joined: Dec 2012
#1
advice wanted

hi there,
i have a beautiful 5 year old daughter that has been diagnosed with SPD. This is very new to my husband and i and my family. I am very up and down at the moment. My daughter sensory seeks and is socially innappropriate at times and becomes very erratic and when she is like this its really hard. I am very interested in hearing of people who have tried anything that they can recommend has worked or improved their lifes. She is constantly not sharing, yelling in kids faces, hits, is mean and all i ever hear is her name being yelled out. It always seems to be her upsetting kids. I am waiting to see an OT but i feel like i need help now. My other issue i have is i am so sick of people telling me we are too soft or she just needs a smack. I would be very interested in hearing of anyone that has any nice one liners or things they say to interfering judgemental people, one being my own Father. I know i need to develop thick skin but i am very senitive and emotional at the moment. Thanking you in advance.
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heather40 Offline
Busy bodys
*

Posts: 210
Joined: Sep 2012
#2
RE: advice wanted

First don't listen to those people telling you that you are too soft. Ok, now that I have gotten that out of the way. lol You will be sensitive right now because it is so new to you, believe me that will pass! Punishing by hitting or time outs only makes things worse! I remember before I knew what was going on with my son ( he is 8 now) and I would put him in time out it would make things worse, why?!?!? Being restrained in a sense can't tolerate it! Well... once I got the diagnosis the flood gates opened and then I was able to figure out what ot do! SPD kids are very visual. Use visual cues, it will take time but it will work. A big one that I had shared on here some time ago was I have my kids do push ups, they hate it but.... it is good for my son with SPD, he too is a sensory seeker! Her social skills will come with time that is a big one. My son still hits but mostly his brother. He has just actually hit a huge milestone and used his words a week ago and told another child "I just don't like to be touched" I about dropped over! Heavy work is awesome for sensory seekers! Weighted items; blankets, lap pads, etc... That is why they are all over, well give them what they are looking for! Because she is so sensitive even being accidently bumped can in her mind make her think someone hit her. My son had to learn that sometimes we bump into each other you can't hit someone every time they bump into you. As for your father, this is your child, he needs to learn and educate himself because I'll tell you what I had a hell of a time with my ex in laws, they used to tease my son which he takes everything literally and did not understand the teasing and it would send him into meltdowns. I finally ripped them all apart! I had had it! The stupidity make me want to vomit! I am not a person who will hold back, when it comes to my kids I really don't care about the other persons feelings regardless of who they are. Children cannot defend themselves to an adult, they have to be respectful, but my feelings are.... we are their parent, advocate, protector they depend on us to have their back. Believe me I have mine! Be blunt, again I have said this in other posts. I have made up business cards to hand out, explains what my child has then directs them to a site where they can educate themselves! There are no excuses these days when we have so much advertising and chairities advertised all over regarding different disorders. It is not like when I grew up (70's) and if you had special needs you were stuck in a room like you had leoprocy and nobody knew why you were in there but YOU WERE! lol So there is no reason for ignorance!~ ANyway.... Get used to her name being called out, every time I see the schools phone number show up on my phone, I know why! lol I am on a first name basis with the principal and asst. principal! lol Get some books, Out of Sync Child is a great one, keep posting on here your road blocks and we will share what we can. I say make yourself a behavior chart, the stop light one is easy and good to use. Gives the three warnings and have pockets on it to move a popsicle stick or something that maybe she can make to move when a warning is given, by the third warning you go to do your 5 push ups ( good for deep pressure). I find that transitions are easier with knowing what will happen. I tell my son " First warning!" Move his thing to yellow, he zips right back into shape. If she has trouble transitioning that can be hard thing for them too, set timers then she is aware and can prepare herself for the change. "You have 10 min and I am setting the timer when it goes off we are done". Print out picture cards they are free online, I also taught myself some basic sign language; "finished, more, etc... " things that if you are in a situation where you cannot do push ups sign "finished" and eventually it will work. Do not avoid social settings for her, she needs to learn this, from what I understand this is the hardest and comes last. I will think of more stuff now that I have written you a novel! hahaahahah Everything will be ok, find what she is most interested in and go with it, use that to your advantage. A lot of heavy work before you go somewhere, let her go and run and jump before you have to go somewhere that you have to sit for some time, get a sit fit cushion they are like $25, my son has used his since pre school. Don't let anyone tell you anymore about what you aren't doing ignore them and focus on what you are doing. They are clueless!!!!! Happy New Year !!!!!!!!
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Sunshine Offline
Newbie

Posts: 8
Joined: Dec 2012
#3
RE: advice wanted

Thank you soooo much for your reply. It was great. I have out of sync child and I am
Half way through it. I had a terrible day today. I went to my dads for a BBQ and she
Had a massive melt down. Previously to this he was on to her about silly stuff. I really
Think I am going to stay away from my dads until I am feeling better to deal with him
And also until I see the OT. I really need to be strong and have some strategies in place
With her. I spoke to my brother today. He is great and very supportive and reading the book
But he did tell me that he doesn't trust my daughter around his daughter at the moment. His
Daughter is 2. That cut deep. He did say that he probably shouldn't be telling me that. (wish he didnt
Really) made me feel like crying. He thinks I should tell people about the SPD so they will understand
Better but I'm so worried they will judge her. How do you deal with this? I pray the OT helps bc I feel so helpless at the moment and the thought of people thinking badly of my daughter breaks my heart. That is wonderful that your son managed to say that to the other child. Can I just ask what do you do
When you are out and your son is starting to misbehave? Do you take him away? Give him warnings? Take him for a walk?
Happy new year to you too. I hope it's a happy one.
P. s do you think the out of sync child has fun is a good book to read to?
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heather40 Offline
Busy bodys
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Posts: 210
Joined: Sep 2012
#4
RE: advice wanted

Awww, I'm sorry. It is very hard and that is why she had the meltdown I bet, that and just all the stimulation. If your dad asks why you are not coming around tell him the truth, you don't understand my child and do not want to take the time to understand her. What you do to her causes her actual pain and she does not know how to cope with it yet. Until you understand and take the time to learn what is wrong with your granddaughter we will have to stay away. Let him think about it. Than maybe your brother can talk to him too. IT does hurt, but I understand. My son used to be very aggressive he has beat up more people in his first 4 years of life then I have my whole life and I do Muay Thai kickboxing! lol I would tell people I understand if you do not want us around. He punched my friends daughter in the face one time and, oh wait TWICE second time was awful!!!! She was gushing blood everywhere!!!! Over a toy! He used to bite, scratch, it was awful!!!!! I am still on edge all the time, but not as bad. You know I think it comes with the territory, at least your brother does understand and is taking the time to learn, but at the same time he wants to keep his child safe as you do yours. So once you get your "sensory diet" in place and get some sense of control so to speak let it roll.
I personally tell people depending on the situation, my son knows what he has, I make weighted blankets and I had him design the logo and I made tags to put on them. He is so proud, he knows they go all over the country to help other kids feel better and to spread awareness. I believe that with education comes understanding, with understanding comes extreme patience ( lol). I don't just go around saying "My son has SPD, but if in an extreme case like someone is just plain ignorant I will tell them , if we are out somewhere and he is flipping out because he is extremely impatient. That is usually when he starts having a "potty mouth". HE has switched from hitting to being mouthy when he is getting impatient now.
What do I do...... Well sometimes bribery works! lol If we are going somewhere that I know will take a lot of time and will be hard for him I use the bribes ( I know might not be the best thing) He loves Lego mini figures, so sometimes I will have one on hand in package and if you can make it through what we have to do you will get this. Ummmm I have a warning chart where his tag will be moved so I will tell him " Do you want a warning?!?!" He will stop because at the third he has to do push ups. I try and catch meltdowns before they are going to happen. there is no excuse for teasing a child with issues or none, but with my son he takes everything literally and doesn't understand that so it is just plain mean! Whit a meltdown, I wouldn't call it misbehaving, it is something that is out of their control because they do not have the coping skills to deal with it. You have to remember ,especially with school that she is NOT a behavior problem or she will be labeled as such! She has "problems" that cause her behaviors. If I know it is a situation that is to overstim for him I will take him away for small breaks so he can "regroup", if he is getting lippy I will give him the warning, but you need to have a warning system in place that they are aware of, so they think " Oh boy when I get home my warning chart will be moved or whatever" I bought a pocket folder and made a mini one to take along with me, and for the sitters house. Always bring along their calming tools, weighted blanket, favorite book, etc... whatever it is that helps them to calm down. I can feel your stress, it weighs so heavily. I never could ever sit down when we went somewhere, I still won't leave him places. He started scouts and I won't leave, he gets too excited and then he gets really loud and lippy! the scout leader is too laid back, not happening and the other leader had a smart mouth with him and I told her off! She told him " I don't want to hear you" Then she looked at me and said I say that to all my boys, I told her "Well I don't say it to mine and you won't either' Then told her what he has, she felt like a big JERK!
I have the out of sync child has fun and I do like it! I used to use the game all the time with holding up the wall! Especially if we had to wait somewhere in a line, we would play it while we waited! lol Talk about looking strange! But it worked and hey you get to the point where you will do what you have to!!!! I always still take a bag of things with me just in case!! We have to wait 8 min in the car after I pick him up from school then go get my other son from his school. It is the LONGEST time ever! If I forget to bring something it is like 8 hours! " I'm thirsty, I'm hungry, " Then I am like we will be home soon, " BUT IT I AM NOW!!!!!!!!!!!!!" SHEESH! So I grab a drink and snack with his Nintendo ds or a book! lol Should he learn to wait, sure, he know there are things he has to wait for and he knows it. Something else that might help her is something like under armor or something like it. It is soft material, but it hugs them. She can wear them under her clothes. My son's OT told me to have him wear those, my friend's son has SPD also ( get those two together!!!! PHEW!!!!)he wears them all the time!

You are going to hear things that are going to hurt, I think the worst thing I heard was another kid call my son crazy on the playground. All he wanted to do was join in and this little punk called him crazy. That broke my heart in pieces. Adults, that is just ignorance they should know better, if not educate yourself. You need to look at it from your brother's perspective his child is very young, but this is a learning experience for your daughter as well. If she likes to be around her then talk to her. You can't be around your cousin right now you have to remember she is a baby and can get hurt, you have to be careful around her, etc.... They don't know how hard they are doing things, to them it could be light as a feather but actually feels like a rock fell on you! Things will fall into place, it will just take time. My biggest advice to you is with others, always be an advocate and have her back, she cannot defend herself from stupid adults you will have to, school will be a challenge believe me! Never allow them to label her behavioral, she does not have a behavior problem, she has a sensory problem. If you need anything please write I know what you are feeling and it is a very heavy feeling, but it will get better, believe me! Have a good one!!!!!!!! Heather
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#5
RE: advice wanted

My 5 y.o. daughter was diagnosed in July last year, just after her 5th birthday. These are the things we found successful:
Books: Effective Parenting for the Hard To Manage Child; Growing an In-Sync Child; Sensational Kids: Hope and Help for Children with Sensory Processing Disorder.
Tools: Chewable Necklace (my favorite is by Jellystone Designs) or Chewy Tube (Therapy Express); Hippity Hop; Weighted Vest or Belt; Yoga Motion-Yoga DVD for kids.
Strategies: Spend time outside every day; Make heavy lifting/moving part of the child's daily routine (lifting laundry basket, carrying backpack with 4-5 pounds in it; pushing a box full of toys around; pulling a wagon; Use push ups as a discipline (if you can locate the post regarding this, it's a hoot to read).
Diet: Feingold.org has a diet that, although not easy, has changed my daughter's behavior 90% for the better. Meltdowns are rare--meaning maybe once a week. I discovered the biggest culprit causing bad behavior was BHT. Once we eliminated that, there was a lot of improvement. Then by keeping a diet diary I was able to discover other sensitivities that caused problem behavior.
If I had to pick only one thing from what I've written, I'd say try the Feingold Diet. Membership is $70 a year and worth every penny. They investigate foods for you, you get a nearly 200 page food list to choose from and the support forums are excellent.
Our daughter's SPD symptoms did slowly improve over the past 5 months with OT, but the most dramatic change was in her behavior from the Feingold Diet.
I wish I could say she's 100% potty trained, but at least we've gone from 3-4 accidents a day to 6-8 a week. That improvement also resulted from the diet.
Remember, you are not being too soft. Kids with SPD need accommodations equally as much as people with other disorders. You may wish to keep a diary for a few weeks of your observations of her behavior, which may help you to identify what you would like her OT to work on initially. Welcome to the group!
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Sunshine Offline
Newbie

Posts: 8
Joined: Dec 2012
#6
RE: advice wanted

Thank you so much for that. I have been
Reading the out of sync child and the out of sync
Child has fun. I thinkibg of getting a swing
For inside that she can hang upside down from (
She likes that) and also was thi king of making
Like a crash pad. I looked on eBay and there were
Some long pool bean bags that I thought I could get
2 and let her jump onto them. Do either of you
2 or anyone out there have anything like this in your
Homes? Have you found it to work? How long and how
Often do you get them to do it? Do u get them to go on
It when they are becoming erratic? Before? During? Would
Love some advice on this. I am waiting to see the OT but I
Am sick of waiting.
Cheers
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heather40 Offline
Busy bodys
*

Posts: 210
Joined: Sep 2012
#7
RE: advice wanted

I used to have the mini trampoline in the house, IT WAS WONDERFUL! I can't remember what happened to it. I would have him use it before we would go somewhere, when I saw frustration, or at his leisure. lol Couldn't put it away it was too big. Get a storage bucket with lid and fill with rice or beans hide toys in it and get large tweezers, that is a good one, something to use as a distraction, have to sit and focus and redirect from the other issue that was upsetting her. That is one you put away and take out so it is special each time. Just start making your own "sensory diet" and go with what works for her. When you use your OT you can tell her what you have been doing and what works for her and go from there.
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Jaffa Offline
Regular

Posts: 112
Joined: Oct 2011
#8
RE: advice wanted

I have a 6 yr old boy who has SPD and I have a mini trampoline that he gets out and has to jump on when he is having whinging and thrashing around moments. He enjoys the big exercise ball to sit and bounce and lie on and roll over. I also get him to try and push the wall if I am out and he is beginning to get stressed.
My son is a perfect pupil in school they have never seen a meltdown from him and he has been in there since he was 3 in the nursery. His school however sent him to OT as they suspected he has SPD.
I too have had people in supermarkets say he needs a smack or people staring while he writhing on the floor. I use to pick him up and take outside to calm down. Now I take his ds or mobigo and he plays on it while we shop. If people say anything now I will comment that he has a disability that is not visible. You will grow a hard shell to the ignorant people.
I do have to have him outdoors more than indoors. On his bike or running or jumping. He loves the park. Lots of heavy work. It does get easier
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stineybeany Offline
Regular

Posts: 10
Joined: Jan 2013
#9
RE: advice wanted

I second/third the idea of a mini trampoline! It is a lifesaver! I also have my son build his own obstacle courses (he is 5), so he gets the heavy work of building it, plus the input of using it. Tunnels, tents, etc; whatever he needs to use. Also, if he needs to focus and cannot, I have him put toys in a backpack and wear it (like a weighted vest), and it helps regulate him. We also got him a punching bag (since gone, he broke it!) to hit, and we practiced that is what he hits when frustrated (rather than other people). I also found i need to have patience- for myself, for my son, and for those around me. If I am a wreck, I cannot help him calm down. Socially, is it possible to have playdates with one or two children in a setting where you can redirect her at first, as well as get an idea of what makes her upset? Knowing what will "set off" my son is helpful, as i can try an intervene ahead of time. good luck!!! you can do it!
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heather40 Offline
Busy bodys
*

Posts: 210
Joined: Sep 2012
#10
RE: advice wanted

It is a process, but once you know what the triggers are you can help to stop them before they start. I know now every instance that will set him off. I talk to him before hand, ' If blah blah blahh happens ' you cannot hit, scream, hide, etc... He went to his best friends Saturday and usually when it is time for me to pick him up he will go in a corner and hide, he will get a smart mouth, etc... So we discussed this before he got there. The punishment would be he would not go back. He is too old to be hiding from me,when it is time to go it is time to go! He is VERY fortunate to have found a friend at school who is very laid back, they are like long lost twins, he just adores my son and when Logan is mean or has a behavior his friend will tell me ' It is ok, he is my best friend". They are 8 years old. I thank his mother all the time for giving birth to this child! He plays with other kids, but gets frustrated much easier then he does with this boy. So there is hope, a lot of discussion before you go somewhere I have found helps as well with age. I am still horrified to leave him at a persons house which is not often! It is mostly because that maybe the parent might not understand why he is doing something, so I always explain ahead of time, then hope for the best! It will all come with time, stay strong, in shape lol for all the chasing, you guys will be ok.
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