My daughter, my frustrations..........

LIsa - posted on 08/22/2009 ( 7 moms have responded )




I have a 4 1/2 year old girl who I really believe have some strong characteristics of this disorder. I began researching this when she was 3, closer to 4 actually when the state finally diagnosed her as having a severe speech delay. At the age of 3 1/2 she was tested in the 3 percentile for speech. A 97 percent delay. After advocating and waiting, I finally got her in our Early Special Ed for 2 days a week. She attended that 2 half days a week last year, her speech has improved tremendously but I still see other issues. I have asked professionals over and over there has got to be an underlying issue that has cause such a delay since there were vowels and such she never learned back in infancy. Also, it used to take us 2 hours just to prepare her for the fact that we will be getting dressed and leaving an hour after that! Special Ed has helped that alot, but there are still things, like wanting all the lights on in the house, won't flush the toliet due to the noise, washing her hair is just a nightmare!! no water near the eyes or on the face, echoing what I say more to herself, not mocking (well not all the time :) ), eats the same foods, won't go outside if the air smells, like if there is dew out or after it rains. She just started preschool 4 days a week and has had a meltdown, like throwing her full toybox across the room, grabbing her hard plastic golf club and hitting it so hard on her door ( over and over) it made a dent, crying at the drop of a hat ect, everyday this week but thursday, this is all responsive to her having to go to school 4 days a week. She does fine at school though which is good. I know she's only 4 1/2 but that just seems extreme way to acclamate to a school schedule. She jumps on my all the time (painfully that is), she has had a history of just spinning in circles and arm flapping but that hasn't happened in awhile.

I know there are more but I can't remeber. I have to add that her dad has ADHD/Asbergers (mild), I have ADHD, her cousin has severe Autism and her uncle on my side asbergers. So there is a very clear family gene. I don't know how to get tested, when I talk to her school they pretty much say that since they haven't seen any problems (this was when she was going only 2 days a week) then it's my parenting. When I talk to family I am over reacting, it's just her age, blah blah blah...I don't see anything severe but I am afraid it could be something that can effect her educationaly and personally as she developes. She is exteremly bright and that it seems will be the extra shove right in between the cracks and she will not get the help she needs.

Now that she is in school 4 days a week and we need to revamp her IEP I wonder if I should bring these issues up again since she has different teachers and a nicer principal. Last year her principal and IEP team accused me of wanting something for free and threatened to take the little time she did have away since I asked for more so I am leary of asking for more help but at the same time it's my daughter's right to have the best education she deserves and I don't want my fear of being bullied jeopardize that.

I love her so much and I know I get too frustrated with her. I do feel like I am failing as a parent. That makes me feel like a failure as a human. Shes my greatest thing God has given me and I feel like I am screwing this wonderful gift up.

Any suggestions???



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Brandi - posted on 10/07/2009




What I've learned about the school districts is that they aren't great at getting things diagnosed, but work better with diagnoses. What I mean is that you'll be better off to get her diagnosed by someone outside the school...a neurologist, Occupational Therapist, her pediatrician, whomever. Unfortunately the schools don't have anyone qualified to make an SPD diagnosis, but they should be willing to make accomodations for your daughter once she is diagnosed. Then you can go back to the school and say, "We have this new diagnosis to add to her IEP." What services/accomodations do we need to add to help her achieve? Good luck!

Tiffany - posted on 09/25/2009




My son is 2 1/2 and his development has been fallowed by the health department since before he was born. The health department has done some testing and would like me to take him to a pediatric occupational therapist for a sensory evaluation. I do not think insurance covers this. I also have people say he is just a little boy or he will grow out of it. He goes to a mother's day out 3 days a week and is great there. So, they will not do anything, they have said, " children are like that with their mothers." It is frustrating. You may try the occupational thapist and see what they say.

Shelly - posted on 09/24/2009




You are not failing as a parent, first of all. It's very clear to me from reading your note, that you care very much and are a good parent.

That is disappointing to hear about her school's reaction. I agree.. shame on them! They need to be more careful about who they hire as principal.

Some of my family and friends were the same way about my son (age 5) with the "he'll grow out of it", "it's just a phase", "he's just a boy" attitude. His Dr actually told me that "he will outgrow it". But others were asking me if he was autistic or had some other issue. I decided it would be better to find out for sure than to sit there and wonder. So I got some recommendations from other homeschooling moms, and took him to an Occupational Therapist. She gave us the diagnosis of SPD. It was a relief for me, knowing that he did have something that we could put a name to, and that there were things that we could do. I also, STRONGLY recommend reading "The Out of Sync Child" by Carol Stock Kranowitz. I have read the book a couple times (just loaned it out to the YCM director at our church), and am taking notes! It's a great resource, but more importantly, find an OT in your area who can give you a diagnosis, and help you decide a course of treatment.

I pray that you find the answers you are looking for... Children are a gift, even when things are difficult.

Heidi - posted on 09/23/2009




I have found that putting things in writing, such as "I request that my child be evaluated but a psychiatrist or occupational therapist by ______(date)" is usually effective for schools. They just seem to try to do as little as possible.If it is not demanded they won't do it.

[deleted account]

I understand how you feel. My daughter just turned 8 and for the last 6 years we have turned everywhere we could think of for help. Early intervention and her school told us they found nothing wrong. They believed she had ADHD. Several doctors made diagnosis of ADHD, ODD, and even PDD. They had her medicated and when I realized the medications actually seemed to be making her worse I tried to talk to the doctor who walked away from me. Needless to say I took her off of the medications myself and continued to look else where for help once again. In July we took our daughter to an occupational therapist for an evaluation who diagnosed her with SPD. To our surprise she has made remarkable progress in such a short time. Instead of throwing violent tantrums for 1-2 hours she may throw a bit of a fit for maybe 10 minutes...huge difference. An OT saved our little girls life, maybe they could do the same for yours.

User - posted on 09/02/2009




First off, shame on that principal! What is wrong with people these days? Anyway, I know what you mean about thinking you are messing things up. My daughter is 8 1/2 and I JUST got the diagnosis, went through the "it's just her age, it's just her", but it didn't get better. The best thing you can do is educate yourself, read "The Out of Sync Child". Keep trying to find a pediatrician who will LISTEN. Contact a local OT group and get a recommendation for a pediatrician who specializes. That's how I found my daughter's pediatrician and it really was better to have that confirmation. Don't listen to the school or your family. STart with finding a pediatrician and take it from there. It does help relieve some frustration when someone thinks you're NOT crazy. My family still gives me the look, but now my daughter is in OT and is really learning how to deal. Check out this website also http://www.sensory-processing-disorder.c... it really helps. (as for the food thing and water- appease her for now. just let her know you are listening to her and that does help. she's probably just as frustrated as you are and doesn't know how to voice what's going on.) good luck!

Sandy - posted on 08/22/2009




I went to my family doctor and after some routine testing he referred my to the developmental and Behavior specialist in our area. There is usally a waiting period to get in, but there is where I got my twins Diagnosed with ASD. Also, they were attending speech therapy and I talked to them about my concerns, they were tested there too, for sensory issues, and now get OT weekly. Keep asking..demand help...start with the medical doctors and don't give up until someone gives you the right referrals.

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