Tap Posted May 22, 2013 Share Posted May 22, 2013 DD6 has been in public school all this year for kindergarten. Homeschooling her is not an option right now (she is agressive/violent and knows how to push my buttons). I put her in public preschool last year so we would have her IEP in place for kindergarten, specifically so she could be moved to a special needs program right away. They decided to mainstream her for K and just offer supports to help her. It has been a horrible school year. She has not progressed academically although she seems to have normal cognitive function. She has not progressed socially and she is acting up or sleeping at kindergarten every day. The last time period they tracked, she missed 1200 of 1800 minutes of instruction due to behaviors or sleeping. We had a behavior plan meeting yesterday. They have pretty much decided to finish out the school year with a one-on-one but to move her to a special needs program in the fall. I know it is the right decision....but it makes me sad none-the-less. As much as I thought they were wrong in mainstreaming her, I held out hope that they were right and they could offer supports to make it work for her. We are looking for answers, it just takes so much time to get them. The school is going to do a full evaluation of her before the end of the school year and rewrite her IEP to get the correct placement for her. We are working on getting a neuropsych eval done but it won't be until fall (Dr availability that takes my insurance). She has a sleep study tomorrow to tell us if the sleep issue is behavioral (avoidance) or biological. She has an appointment with an ENT to rule out tonsil/adenoid issues. I just feel like there is something I should be doing to help her, and I can't find the answer. Even if it is a biological answer, just knowing that will be something. I just feel sad to be taking these steps backward. I have seen my kids stall out and not move forward for a while, just to see a huge leap seemingly overnight. Not moving forward is hard enough, but going backward...this is a whole new feeling. Quote Link to comment Share on other sites More sharing options...
Starr Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: I'm sorry that this is so difficult. It sounds like you're getting everything scheduled. It's hard that it takes so much time. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
*Lulu* Posted May 22, 2013 Share Posted May 22, 2013 ((Hugs)) Quote Link to comment Share on other sites More sharing options...
Oakblossoms Posted May 22, 2013 Share Posted May 22, 2013 Have you tried removing dairy from her diet? I would do gluten after that. I know removing tonsils seems commonplace. But, when they swell up they are telling you something. I am sorry you are going through this. Quote Link to comment Share on other sites More sharing options...
celticmom Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: :grouphug: :grouphug: Another thought, food allergies/sensitivities can cause most if not all of the issues you mentioned. I was diagnosed younger as a child than your dd but many of my symptoms were behavioral and my dd has behavioral symptoms due to a food sensitivity. Quote Link to comment Share on other sites More sharing options...
Kathryn Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: My ASD 7yo is aggressive/violent/defiant. We've been waiting for over a year to get back to the behavioral pediatrician. We had our first appointment to talk about this two weeks ago, will go back in two weeks for them to do whatever testing they decide to do, and then back again (two hour drive each way each time) for their recommendations. I'm nervous about it. Quote Link to comment Share on other sites More sharing options...
Tap Posted May 22, 2013 Author Share Posted May 22, 2013 Have you tried removing dairy from her diet? I would do gluten after that. I know removing tonsils seems commonplace. But, when they swell up they are telling you something. I am sorry you are going through this. She was allergic to dairy as a baby so she has just had dairy reintroduced this year. No, difference before or after so we know that is not the cause. We have never been 100% gluten free, but pretty close. I tried 100%, but only made it a week. During that time we did not notice a difference, but I know it can take longer. I have a large list of food allergies, dd14 has sensory/food preferences, and dd6 is still off of most dairy. It gets to the point that it is impossible to cook when we go gluten free. Honestly, if she had any other signs of celiac, I would make it happen, but without, I think I just hit a wall. We are a busy family and eat out a couple times per week for quick grab and go. We go to good quality fast food places (usually Burgerville a PNW chain) but I can't do this at all if we are gf. DD6 eats chicken nuggets for at least one meal a day (one of her fixations) and when gf we can't do that (she doesn't like the gf ones I found). This leads to a behavior if she can't have them.....which perpetuates my exhaustion and thus the wall comes screaming at me, I hit it,.....and then I give in. We will be on vacation a bit this summer, so maybe I will try again then. We stay at a cabin (no eating out), so it will be easier to just not take anything with gluten on the vacation. It will only be a week at a time, but it would be a good start. Quote Link to comment Share on other sites More sharing options...
Oakblossoms Posted May 22, 2013 Share Posted May 22, 2013 It can take a good 6 months to really see a difference. Has to do with everything recirculating through the body and bloodstream. Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Tap Posted May 22, 2013 Author Share Posted May 22, 2013 It can take a good 6 months to really see a difference. Has to do with everything recirculating through the body and bloodstream. I have heard a month or two, but not six. That honestly makes me not even want to try. I know it sounds bazaar to not try, but we already have such food issues here, I can't imagine making my entire family go gf for 6 months to notice a difference. (I have allergies to egg, milk, tomatoes and peppers, potato, peanut, hazelnuts, almond, sesame seed, salmon, shrimp and a few others). DD14 doesn't eat mushy or creamy things (Alfredo etc) or melted cheese and eats raw veggies not cooked. The thought of adding gf to that is just...well without a personal chef....it is overwhelming. I am not a stranger to food sensitivities and the difference it makes. Maybe that I why I fight this so much. I know it can be the issue, but the amount of work required to honestly and truly see if it is the problem is just overwhelming with her other issues on top of it. Quote Link to comment Share on other sites More sharing options...
Twigs Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
QueenCat Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: Tap :grouphug: Mine needed a 1 on 1 aide in the regular classroom at the age of your daughter. It made a world of difference for him (and the teacher). Quote Link to comment Share on other sites More sharing options...
chiguirre Posted May 22, 2013 Share Posted May 22, 2013 I have heard a month or two, but not six. That honestly makes me not even want to try. I know it sounds bazaar to not try, but we already have such food issues here, I can't imagine making my entire family go gf for 6 months to notice a difference. (I have allergies to egg, milk, tomatoes and peppers, potato, peanut, hazelnuts, almond, sesame seed, salmon, shrimp and a few others). DD14 doesn't eat mushy or creamy things (Alfredo etc) or melted cheese and eats raw veggies not cooked. The thought of adding gf to that is just...well without a personal chef....it is overwhelming. I am not a stranger to food sensitivities and the difference it makes. Maybe that I why I fight this so much. I know it can be the issue, but the amount of work required to honestly and truly see if it is the problem is just overwhelming with her other issues on top of it. Uhhh! I agree GF/CF was a royal pain in the butt! I was sooo glad it made no difference for my boys. OTOH, GW is very sensitive to salicylates. We found this out when he went bonkers drinking 100% juice Cranberry cocktail. The grape and apple juices make him very aggressive. If you think this might be the problem, it's easy to test out. GW still needs meds, but he's become pretty pleasant to live with since we clued into the issue. Feingold is so much easier than GF/CF that I'd try it first and see if it helps. Good luck! Quote Link to comment Share on other sites More sharing options...
J-rap Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: I'm sorry. But she isn't moving backwards, really. It's just your understanding of where she's at that is moving backwards. The closer you get to understanding what her very specific needs are, the closer you are to being able to get her the best help. I think you're actually moving forward toward that goal. I know it must be difficult, however, so more :grouphug: . It does sound like she is in a good place right now. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted May 22, 2013 Share Posted May 22, 2013 I'm sorry! It must be "bad news at IEP meetings" week. (((Tap))) Quote Link to comment Share on other sites More sharing options...
MyLittleWonders Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: I am so sorry. We have also had great success with GF (and CF), but it is a pain, especially when I was temporarily off of all nightshades. I felt like eating was seriously depressing. I second the idea of Feingold; that is easier in the bigger picture and made/makes huge differences for my middle son especially (a lot of anger/rage/oppositional stuff when exposed to anything artificial; we found out that even a minute amount is bad when I tried to give him some children's Advil and he took less than 1/4 teaspoon and reacted). From our experiences with Feingold, GF, and CF, it was about one month for systems to completely reset, but after a couple weeks, we could tell things were moving in the right direction. It's the same if anyone is exposed to something on the "illegal" list - about 30 days to fully clear but the behaviors start to calm down a bit by week two or three. Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted May 22, 2013 Share Posted May 22, 2013 I have no words of wisdom, but I'm sorry it took a full year for them to acknowledge her needs.... glad she's getting the help now. :grouphug: Quote Link to comment Share on other sites More sharing options...
Miss Marple Posted May 22, 2013 Share Posted May 22, 2013 :grouphug: I'm sorry you're going through this, but I agree with jjhat7 that by understanding your daughter's problems and getting her help, you are actually moving ahead. I'm sure it doesn't feel that way, though. :grouphug: Quote Link to comment Share on other sites More sharing options...
Truscifi Posted May 23, 2013 Share Posted May 23, 2013 :grouphug: It sounds like you *are* doing everything you can to help her. It takes time, though. :grouphug: Quote Link to comment Share on other sites More sharing options...
Eagle Posted May 23, 2013 Share Posted May 23, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted May 23, 2013 Share Posted May 23, 2013 I totally get the food issues that cause problems for some kids, because we have those things at my house, but I noticed your dd was placed with you from foster care. That alone is likely the root of the issues your dd is facing. Even if she was placed as a baby she may have experienced a hard life before birth (that affects kids), and there may be unknown issues that the birth parents have that may have been passed down. The important thing is that you are looking at all of the possible options and getting the help she needs. As others have said you are not going backward, the school is just finally realizing what you already knew. That kept you from moving forward this year, but hopefully that will change. I hope that they help her next year, and in the mean time I hope you get some answers from private sources that are usually more helpful than schools anyway. Quote Link to comment Share on other sites More sharing options...
Tap Posted May 24, 2013 Author Share Posted May 24, 2013 Thanks everyone, I really appreciate the hugs! We are at the sleep study right now. She is snoozing away in her bed, I am propped up here on the couch, hoping that I will be able to at least sleep part of the night. The sleep tech was really nice to her and she just sat and let him apply all the electrodes and wires. She did great! We should get the results in about 2 weeks. I feel a bit better about things now, but still disappointed at the lost year. Dh and I were talking today and I finally figured out why I feel like we have moved backward. Last May she was a 5yo girl who was on target or ahead for reading and math. She was considered bright and while she had behavior issues, they felt that a regular teacher could handle her and her regular students. Now at 6yo, she is considered behind academically, has severe behavior issues, is considered dangerous by other kids, and many of those kids that happily sat next to her in the fall.....now scoot out of arms reach when she joins them at the table. I do realize that she hasn't lost skills, but she has lost considerable ground for age appropriate milestones. She started the fall in the highest reading group and was on booklet 6. Then they started to lower her reading group in the fall as her frustrations and issues started to consolidate around reading time. 3 more reading steps downward, 5 months later, and she is on booklet 9. The group she was with is in the 30s packets. She knew her letters and sounds when she was 4yo so she came to the school with a solid background at 5yo. 2 years later and she can barely blend basic sounds. I would say she has progressed about 2months of reading ability in 2 years. I know all kids progress at different rates and that some leap frog ahead when things finally click. But it isn't that. This is her life. She has a solid disconnect between the ability to learn in formation and the ability to use the information. ugh, need to go to sleep before I start stressing out again. Thanks for the kind thoughts, prayers and hugs Sweet dreams, Tap Quote Link to comment Share on other sites More sharing options...
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