New Here

Hi everyone, I am Jenny, after fighting for my now four year old daughter for nearly two years we have gotten her diagnosis of Sensory Integration Disorder and she is now in Occupational Therapy. What seems ironic to me is that I've had to fight for this through the schools and doctors but in her first week of OT the therapist says she is a textbook case and it's glaring that she has SID.

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

▶ Reply to This

Replies to This Discussion

Permalink Reply by Jennifer L Daschel on January 4, 2012 at 10:41am

Jenny,

I have a 4 year old with these issues as well. She was just diagnosed with SID by her private doctor but the school battle has just begun. They say she's normal. She OBVIOUSLY isn't. She is also having a PDD and Asperger's diagnosis ruled out. I have the same difficulty as you do about differentiating the two behaviors. Some of my family understands but some do not and my husband's family is totally not supportive of this. My husband is coming around but i'm not thrilled with how he handles her. I hate the judgement I get from people everywhere we go. They assume she is just a bad kid. It kills me. My daughter is also waking up constantly! Last night was just one time! Or one that she came to my room. I go back and forth. THey told me I could reward her for not coming to my room at night. But if she's waking up I want to know. So while I get more sleep if she stays in her room I don't know what is really going on with her. We give her melatonin which helps her get to sleep but not STAY asleep. Does your daughter socialize well? Does she have trouble with clothes? What about saying "I love you"?

Jennifer

▶ Reply

Permalink Reply by Carolina armesto on January 13, 2012 at 2:08am

Hi im carolina, i have a son with spd and a pdd dignosis, for him being with other kid is so hard, and the way kids and members of the family look at him it kills me too, they looked at him and let him knoe he looks wird, that just so unfair that makes me mad...but you can teach her to show you that she loves you, im also a children psycologist and i promese you can do that, it took me a year but hes really really tender with me my husban and my parents..star teaching her a bear hug, it has to be a really hard deep hug, and when she feels confortable doing that then move to just a hug, and then you changed for a hug and expression, and then you will feel her love and its just worth it.... My son has trubles with some cloths, washing and cutting his hair, nightmears, getting wet, before that was getting dirty, with poo, and i can keep going, he tells me he notice he is not like other kid, noise kill him, but we have to be really orou they fight a lot and its just exahusted...i really really hope your dughther tells you love you, very soon

▶ Reply

Permalink Reply by Carolina armesto on January 13, 2012 at 1:58am

Hi, my name is carolina i live in merida, mexico since by son, now 4years old was 7months i new something was hurtting him, here they dont not what sensory processind disorder means, so they still telling me how i shoild teach him, or if its just that he wants attention, or that i orotect him too much, the true is that he has his first dignosis at age of 2 years10months ols at the star center in denver and the seond one at age of 3and i went last july to the alfsno center in miami an to the miami childrens hospital an they say exactle the same, spd and pdd , but even with all that my friend, part of my family and my sons teachrs still saying he has tantrums, bsd bahivior and ofcorse i should be doing things differently,hes imoroving so much, so i feel so lonley that sometimes its really hard, but ones everylong time i meet someone who makes me feel im doing the best for my son and that i cound on them, ans that gives me the strenght enough to keep going, nightmears where the worst part for almos 3 years but they stoped a few months ago...as a write every strategy let me find out whst helped us with the nightmears and i writte you back, because sleep is really important in order for your girl to feel much better and have less meltdowns, nd ofcourse for you, its just exhustting i can tell, but they will pass, at list for seesons. I hope to make friens that can talk an feel the same language thsn i....thank you so much caro

New Here

Replies to This Discussion

Events