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She is also seeing a neuropsychologist to rule out PDD or Asperger's.
For the longest time I didn't think I needed any sort of support group but now for some reason I really really do. No one gets it, not my family and not my husband. Sometimes I feel like it is me and her against the world. I have trouble trying to figure out what behaviors are related to the sensory issue and what is just plain old bad behavior.
I'm tired of well meaning people giving me parenting advice, telling me that I am not firm enough...always finding fault in me because they don't understand what it is like to live with this 24/7, they don't understand just how big of an impact it has on our life.
I am exhausted too, she is waking up multiple times a night.
Wow, didn't expect to write that much-sorry. I hope to get to know you all.
Jenny
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Replies to This Discussion
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Permalink Reply by Jenn on -
Jenny,
My name is Jenny also and I have a 4 year old son and 2 year old daughter that also have sensory issues. I too am soooo sick of hearing I need to be firmer or I'm too easy with them....It is very frustrating. I would welcome someone I could share my moments with that understands what day to day activities can be like. Thanks!
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Permalink Reply by Jenny on
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I'm so glad that someone finally wrote back! Would you like to be email buddies? Maybe we can vent to each other!
My email is TheRetroHousewife @ G Mail . Com
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Permalink Reply by Angela Carneal on -
HI Jenny,
My son is almost 5 and has SPD. I feel so alone as well. No one understands what Im going through not even my family. I'm a single mother & work full-time. I just need to know I have other moms out there like me. Im so glad i found this site and would like you to know your not alone. My son wakes up alot too and won't go to bed early. im tired all the time. He goes to OT 2x a week and really should go 3. Lets keep in touch maybe we can help eachother.
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Permalink Reply by Dana Twaddle on -
Jenny,
I too am new to this site and although your post is somewhat old, I figured I'd try to reach you anyway. I have a two and a half year old that was diagnosed with SPD about two months ago. Like you, I knew something was wrong. My family blows it off as her being spoiled (the excessive crying and clingyness), the school says it's normal. I have been on the verge of a complete break down because I feel like I am the only one that sees it. Luckily, my husband sees it too, but is leary of the diagnosis, although he doesn't outright voice it. I have been researching, reading every book I can find in order to help her. She has her whole life ahead of her and I'm still not sure that she won't have a Autism Spectrum diagnosis before it is over with. I, like so many others, am worried about her future ability to make friends and get along in this big world. I am looking for other parents out there who are willing to be a shoulder for someone like me, and I in turn will be one for them. I's a terrible time when the only support you can find is that of strangers, but then again, who better to understand than those going through it themselves.
I would love to hear from any of the parents struggling with this! Please feel free to contact me at danaraylene@yahoo.com. Please lsit Sensory Processing in the subject so I will not mistake it as SPAM! LOL!!!
Thank you,
Dana
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Permalink Reply by Tanya Fleshman on -
Hi Jenny,
I understand how you feel. I too don't feel like I'm getting the support from my husband and mom. I just finished reading this book called "the out-of-sync child" by Carol Stock Kranowitz and it has some great advice on how to work with children that have sensory processing disorder. She also wrote a book called "the out-of-sync child has fun" and it tells you about types of games you can play with your child to help their sensory issues. She also has a website... http://out-of-sync-child.com/ Maybe you can find some tips there that will help. You're definitely not alone in this, there are lots of others that are going through similar issues with their children. All we can do is raise awareness and keep doing the best we can to make things easier for our children. Feel free to write me any time. chenmae_tzu@yahoo.com
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Permalink Reply by LaDonna Gray on
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I am new to this site and your post is the first one I have read so far. I feel you all too well. I have an 8 year old daughter that was just officially diagnosed yesterday by an OT. I have struggled with the SPD behavior for years not knowing what was wrong with my girl but knowing something wasnt right. I do feel like its "us against the world." I am so happy that the OT saw what I have been seeing and experiencing which seems like forever. My parents do not understand, thinks the OT will just "fix" this and it will all be better soon. They have no idea what we struggle through daily. My daughter has had struggle after struggle with wearing clothing. She has wore the same undies, shirt and pants since the first day of school in August. Every afternoon after school, she strips naked at the back door, and her clothes go straight to washer to be clean for next day. I am beginning to sweat the fact that her underwear are beginning to wear out and have no idea what we will do when that happens. I am just happy that I found this forum, the OT saw what I have been experiencing and hope to be on the right track to get my girl the help she needs. Hang in there!
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Thought that I would give everyone an update, its been a couple of years. My daughter was indeed diagnosed with Asperger Syndrome and OCD. She went to a special integrated preschool and then main stream kindergarten. She is now in 1st grade. I think if she were tested at this point she wouldn't be on the Autism Spectrum although she is quite quirky, can't tell a knock knock joke to save her life because she just doesn't understand that type of humor (which actually kind of makes the knock knock jokes she comes up with even more funny) It seems like once she had official diagnosis family were a lot better in their support. At this point she is what I would call a very quirky kid due to what is remaining of her Asperger Sydrome (I know they say you can't grow out of it but it seems as if she did lose quite a few characteristics thanks to early intervention) but she has friends and is living the life of a normal child. She has started medication for her anxiety, I kept her off of it for as long as I could but her quality of life was suffering for sure , the medication has helped.
To all you moms, if you feel in your gut that something is wrong then keep going, don't take crap from anyone, I can't tell you all of the doctors I took her to and the hours I spent on the phone arguing with insurance companies. Do what you have to do , YOU know your child best.
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Permalink Reply by LaDonna Gray on
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Amen to that!!! I feel that same way!!! I have spent endless hours reading, researching, talking, to educate myself. I feel as if I went to doctor and said this is what my daughter has, now help me. He had never heard of SPD before. I live in a town of 6,000 people and I was told there is one other child in our county that has been diagnosed with SPD so yes, I know how you feel. It has been an uphill battle but personally I feel light finally there is light at the end of the tunnel!
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Permalink Reply by Jenn on
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HI Jenny,
I sent you a response awhile back and haven't had a chance to come back on. Glad to hear things are going good for you. My son was finally diagnosed last year as being in the Autistic Spectrum. He is mainstreamed in a private school, but I am working with his district for services. He is also in 1st. grade. I don't have anyone to "share notes" with so feel free to email me mcdowell@vissolutions.com. I would welcome the support!
Jenn
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Permalink Reply by Tanya Fleshman on
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Hi everyone,
Its been a while since I posted. I am now living in California and have been divorced now for a while. My ex still has trouble understanding the SPD thing but he is finally coming more to terms with it. Its really hard living with an SPD child because most people think they are just "bad" kids. My boyfriend also thinks I'm not firm enough with him, although he's slowly starting to understand my son more. I used his IEP and he's finally going to a special ed class. There's only 14 kids in his class, 1 teacher and 2 aides and he's thriving in that environment because he's finally getting the attention he needs. I'm still having problems with my mom not being consistent enough with him and her undermining me a lot. This obviously does NOT help his behavior. Having dinner with my son is a nightmare because of his issues with food. I got tired of making separate food for him all the time, so now I have a 2 bite rule. Unfortunately he still goes to bed hungry a lot, I'm hoping that will change eventually, there has been some definite progress, he's finally starting to try more new foods. I still don't have him in OT since I just moved here in July and still trying to work the system. His OT back in Florida suggested I put him in martial arts, because it would help a lot with his proprioceptive. So he now goes to capoeira 3 times a week. He's made such tremendous progress there. He's becoming less socially akward. Besides the capoeira, they also learn how to play the instruments and even learn Portuguese, its a full immersion in Brazilian culture and he loves it. He's so proud of his new "moves" and his first batizado (its like a baptism where he will get his first cord and his capoeira nickname) is coming up in december so he's been working really hard. Its such a positive environment for him and he's calmed down quite a bit. I highly recommend this for anyone dealing with children with SPD. Sorry about the long post lol. Feel free to write me anytime if you would like to vent hehe. chenmae_tzu@yahoo.com
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Permalink Reply by Jennifer L Daschel on
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LaDonna! We live in a very small area as well. It is 1700 people. Their school is 300 kids pre-k through 12th grade. We just got our diagnosis! The principal had never even heard of the diagnosis. We'll see how things go.
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