https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game Style Advice for Fashion Lovers en-US Tue, 28 Apr 2026 10:49:50 +0000 http://bbpress.org/?v=1.0.2 q https://youlookfab.com/welookfab/search.php https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368255 Fri, 17 Jun 2011 00:56:07 +0000 catgirl 368255@https://youlookfab.com/welookfab/ <p>Hugs to you. I have been waiting to write a novel here, thinking about all I want to say, and now I see it's all been said by the wise, compassionate voices of YLF. I work with parents of kids with special needs often, and the biggest message I take from them is that constant advocacy for their child. They persist, and document, and argue, and lobby, and write letters, and appeal., and speak out. And it is all done with endless love. </p> <p>The professionals you will deal with may or may not be helpful, but the community of parents and caregivers you will find are going to be your biggest source of information and support. Do not be afraid to ask questions and insist upon getting information - I can tell you that persistence and determination make ALL the difference.</p> <p>Hugs to you on this journey - your beautiful girl is precious. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368235 Thu, 16 Jun 2011 23:55:13 +0000 Jonesy 368235@https://youlookfab.com/welookfab/ <p>Yes, Julie, that is *precisely* what I meant :). This waiting period is very emotionally draining, but then the whole testing/diagnosis process can be insane too....I remember when my daughter was having eye problems when she was a few months old. We were referred to a specialist (a pediatric eye surgeon). I was absolutely expecting her to talk about mild interventions, like patching her eye, etc. Instead, she started talking about surgery, within the new few weeks. I remember so vividly the feeling of trying to listen, but being so overcome with anxiety and fear that I could not process what she was saying to me....Anyway, as I said, trust your gut, go to these meetings with the docs etc. in pairs if possible (so if one of you is having a hard time following, the other can pick up the slack), and take good notes, as Katiepea sagely suggested! I will be thinking of you. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368196 Thu, 16 Jun 2011 22:06:43 +0000 Lena 368196@https://youlookfab.com/welookfab/ <p>Julie, I have nothing to add and no experience to share, just wanted to say that my heart goes out to you. You and Ben are wonderful parents and ahead of the curve. Stay strong. I'm thinking about you and Teah. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368147 Thu, 16 Jun 2011 20:40:48 +0000 Inge 368147@https://youlookfab.com/welookfab/ <p>I have no new suggestions, Julie, but just wanted to say that I completely understand your frustration with all the waiting. My sister's son is being tested for Asperger at the moment, and over here it all takes a very long time too, while as a parent, you want to know as soon as possible what exactly the issue is so you can then try to determine what to do next and find the necessary support.</p> <p>I'm sending lots of positive energy for you, Teah and the entire family. Hang in there! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368123 Thu, 16 Jun 2011 19:58:55 +0000 nancylee 368123@https://youlookfab.com/welookfab/ <p>Such wise advice here already...no need to add more. Sending you strength and calm as you start to navigate the "system." You are doing exactly the right thing by being an advocate for your child. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368091 Thu, 16 Jun 2011 19:23:34 +0000 RoseandJoan 368091@https://youlookfab.com/welookfab/ <p>@ Marley - stop and breathe will be my new moto</p> <p>@ Elisabeth - thank you </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368090 Thu, 16 Jun 2011 19:21:51 +0000 RoseandJoan 368090@https://youlookfab.com/welookfab/ <p>THANK YOU so much, you will never know how much I appreciate your support and wisdom. In Scotland at the moment there are 8000 people diagnosed with Autism Spectrum Disorder, this works out of be 1 in every 100 people or 1 in every 500 girls. I have accepted this is a label which in not applied lightly in the UK.</p> <p>@ Louise, Freckles and Lynne - I can understand professionals reluctance to label a child with ASD, what I hope to obtain is 'actionable advice' (thank you for that term Angie) for dealing with her current more tangible difficulties such as her speech, movement and anxiety.</p> <p>@ April, Debbie, Freckles and Judy - A support group sounds like a great idea now that I feel ready to discuss Teah's issues openly. Thank you for this sound advice.</p> <p>@ Laura - I promise to be louder than a fog horn when needed.</p> <p>@ Katiepea, Patty, Butterfly Lady and Jonesy - Such practical advice, a diary sounds like a positive step. </p> <p>@ Khris - I hoped you would comment, I do remember reading your Son has autism and have also noted what a fantastic and typical teenager he appears to be. Thank you so much for sharing your experience.'s</p> <p>@ Patty, Teah's hearing I wish to get assessed pronto, it could explain the delays in her speech and her strange reaction to sounds.</p> <p>@ Steph - thank you for sharing and giving such actionable advice.</p> <p>@ Joy - thank you for reaffirming the correlation between health and diet, this is acutely on my mind as Teah struggles with the texture of many foods. Giving Teah a balanced diet is a challenge but one I intend not to shirk.</p> <p>@ Jonesy - thank you for your perspective, both Ben and I have a history of severe mental health in the family (schizophrenia and bi-polar) and how long an accurate diagnosis can take. I'm not interested in putting Teah into a neat little box, she is her own person with her own needs and we have to meet those needs as best as we can.</p> <p>@ Sarah - I agree Crappy is the term, particularly as I am potty training my youngest :-)</p> <p>@ Suz - I am really happy the pieces are finally coming together.</p> <p>@ Keepthekey - the effect of this process on my youngest daughter is on my mind. Your Mother sounds like a tremendous lady.</p> <p>@ Sally, Michelle, Polly, Celia, Anne, Aunty, Angie, Queen Mum, Rae, Taylor, Debbie, Sara, Sveta, Jean and Heather - your good thoughts mean more than you could ever know. Thank you so much.</p> <p>p.s. I'm sorry if I have left anybody out. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368089 Thu, 16 Jun 2011 19:19:44 +0000 Aziraphale 368089@https://youlookfab.com/welookfab/ <p>I have nothing useful to add, other than my heart goes out to you, Julie, and I hope you see some satisfactory action happening soon. Nothing is worse than waiting on the health care system for the care you need! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368075 Thu, 16 Jun 2011 19:01:15 +0000 Marley 368075@https://youlookfab.com/welookfab/ <p>Oh Julie - I am so sorry that you are going through this! I don't have any other advice to offer you other than what has already been said, but please know that I am thinking about you and your family - and when you get just really frustrated in "fighting the system" don't forget to breathe - nice, long deep breaths that can help you relax, get focused on what is most important, and then carry on with what you need to do, with a sense of purpose and confidence! Much love! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368068 Thu, 16 Jun 2011 18:43:18 +0000 KeepTheKey 368068@https://youlookfab.com/welookfab/ <p>I cannot give advice as the parent of a child with Autism, but I do have some experience as a little sister.</p> <p>My brother was diagnosed with Autism about a month after I was born, and my parents knew nothing of the the disorder, only what the doctor told them. They struggled for some time get him the help he needed, but they were persistent (as you will be, I'm sure). Sometimes you'll have to push past negative people, and the things they say. And it's really tough. But you have an amazing group of women at the ready to comfort, console and encourage you when things get crazy.</p> <p>My little bit of wisdom is this: Your child will only go as far as you believe they can. You have to show your support and love in everything you do for her. Because of all the support my parents gave, my brother is light years beyond where various behavioral specialist said he would be, ever in his life. He owns his own business, he's an amazing artist, he has an active social life and he's smart as whip. </p> <p>One more thing... My mom was a SAHM before the diagnosis. Afterwards she learned everything she could about various learning disabilities and disorders, the education system and what they were obligated to provide for kids with special needs. She ended up being an advocate for over 100 kids in the L.A. area. My brother's diagnosis gave her an even greater purpose in life. Maybe this will open your eyes to something new, too :-)</p> <p>Oh yeah, and you have all of my cyberhugs, support and good vibes coming your way If you need any kind words, or support, you can always PM me... </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368029 Thu, 16 Jun 2011 17:51:14 +0000 Heather 368029@https://youlookfab.com/welookfab/ <p>Julie, I have nothing to add, but I want to wish you strength. Your careful attention and diligence on this matter is applauded. Sending you many warm thoughts and hugs. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368020 Thu, 16 Jun 2011 17:36:06 +0000 Suz 368020@https://youlookfab.com/welookfab/ <p>No advice apart from what others have given, but I do want to express sympathy and solidarity, as my daughter is "spectrum-ish" (not completely diagnosable, but definitely quirky...has to go to a special school where most kids are on the spectrum.) And we began our investigations when she was two and a half, and took her to see many, many people...and played many a waiting game. It is hardest when they are your daughter's age as you feel (rightly) that you need to move quickly to get help. And help seems so close...and yet so far....</p> <p>Perhaps I can offer a nugget of hope. Two years ago we finally found the combination of supports that made a difference for our daughter (who is now eleven) and we are living in a different world. She is SO much happier and doing so much better, and is just a delight. Her own amazing personhood is shining through! </p> <p>A book I have found very helpful for school and just understanding our amazing child is Different Minds by Deirdre Lovecky. <a href="http://www.amazon.ca/Different-Minds-Deirdre-Lovecky/dp/1853029645" rel="nofollow">http://www.amazon.ca/Different.....1853029645</a> </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-368004 Thu, 16 Jun 2011 17:05:56 +0000 greenglove 368004@https://youlookfab.com/welookfab/ <p>Julie,<br /> I cannot offer anything new but strongly suggest getting in touch with other parents. How astute of you and Ben as parents to notice things at such a young age. One thing I have learned is that too much information before a professional has actually come up with a diagnosis can cause excess anxiety that will take away from the task at hand which is too continue with your persistence. </p> <p>Prayers and thoughts with you! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-367995 Thu, 16 Jun 2011 16:46:24 +0000 Sveta 367995@https://youlookfab.com/welookfab/ <p>Julie, I don't have any other advice to offer - you have got tons already here - just wanted to send you good thoughts. This is unfortunate that you have to play this waiting game but I am sure persistence will pay off in the end.<br /> I wish the best luck to Teah and all of you! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-367993 Thu, 16 Jun 2011 16:41:08 +0000 judy 367993@https://youlookfab.com/welookfab/ <p>I can imagine that meeting others who have walked this road before...online or in person...will be helpful to you, Julie. Your little girl is lucky to have parents who love her so much. </p> <p>When my son was diagnosed with something later in his teens...not autism...it is hard. Don't expect yourself to have all the skills or capacities to deal with it all at once. It's a workout and you develop that as you go along, so be patient. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game/page/2#post-367986 Thu, 16 Jun 2011 16:23:08 +0000 ButterflyLady 367986@https://youlookfab.com/welookfab/ <p>((Julie)) I am so sorry you are being so frustrated by all this.</p> <p>My elder son has a severe learning disability, and what Aunty says is right - it's like a war - a series of battles for everything your child needs and deserves. I really wish I could say otherwise, but the parent that shouts the loudest gets listened to (so wrong, some people just don't have it in them/have other problems and can't). </p> <p>I agree with whoever said to keep a diary, with a note of who said what, and when. And a note of appointments made/cancelled etc. </p> <p>And a group/charity, such as The Autistic Society, might be able to help you. I think they have local groups, too, so you can speak to other parents and find out what they did/are doing. And get some support for you and your husband, too.</p> <p>Teah is lucky to have you fighting for her (hug) </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367981 Thu, 16 Jun 2011 16:06:43 +0000 MNsara 367981@https://youlookfab.com/welookfab/ <p>(((Julie))) You are a wonderful mom and you are Teah's biggest cheerleader! </p> <p>You've gotten such sound advice and ideas here. Keep on those professionals to get the help! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367972 Thu, 16 Jun 2011 15:56:55 +0000 Sarah 367972@https://youlookfab.com/welookfab/ <p>This is such a crappy situation to be in, that's really the only word I can use to describe it. I just went to a class about a month ago about helping kids with dyslexia and there were 3 teachers there, myself and 2 other teachers that came with me from our school. The rest of the people in the class were parents who were frustrated with the help they were getting (which was basically nothing). I'm so sorry your'e having that experience with autism too. </p> <p>I agree with the advice to just be noisy and make yourself known. They might think you're annoying, but at least you won't be forgotten about! Good luck!! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367961 Thu, 16 Jun 2011 15:38:42 +0000 Jonesy 367961@https://youlookfab.com/welookfab/ <p>Such wonderful, sensible advice on this thread! Julie, it is horrible to have this little voice in your head nagging at you that something is not quite right with your child, then have to wait while everyone puts you off for several weeks! Horrible! Absolutely keep track of everything, hold everyone accountable, and remain steadfastly Calm Assertive. Know too that mental health/health diagnosis is not an exact science. What can appear to be one thing at one age could be something quite different later, dissipate completely (or possibly worsen). There is always interplay with biological predisposition, environment, and developmental stage, so it's quite complicated and changeable. On top of that the science of evaluation/diagnosis is always changing. Right now, there is big talk about altering the autism spectrum with the new edition of the DSM. They are discussing whether there is actually a spectrum, or several distinct categories, etc. I think "classic autism" is relatively straightforward to diagnose, but things get quite a bit murkier at the other end of the spectrum, with PDDNOS--Pervasive Developmental Disorder-Not Otherwise Specified, and Asperger's. My point is to educate yourself, go with your gut, and know that this is not an exact science. Good luck. We are all advocates for our children to a certain extent, but when something like this pops up, we have to become major advocates! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367951 Thu, 16 Jun 2011 15:21:23 +0000 Debora 367951@https://youlookfab.com/welookfab/ <p>Julie, I can't add anything to the excellent advice you've gotten above. Teah is very fortunate to have you for an advocate and I hope that you will get some answers soon. Hugs and all the best to you and your daughter. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367947 Thu, 16 Jun 2011 15:11:57 +0000 Anonymous 367947@https://youlookfab.com/welookfab/ <p>Julie, I sorry that you have to deal with all this red tape to get help for Teah. She's so fortunate to have you as a mom. The past couple of years I've had a religion class of 9-13 year olds that I see 2 hours a week. Out of 9 children, 3 have been diagnosed with some form of autism and another is still in the process. You may have to be patient, although this is a different health system. Only the most severe was diagnosed as a young child. Two others, with very involved parents and much travel, were only diagnosed this past year at age 12 and 13. The last is 13 now and still looking for an answer.<br /> The other thing to educate yourself about is diet. Here most doctors don't seem to be helpful in this area but the most involved moms have found that a strict diet has been a great help. I don't know the details but am pretty sure that it is gluten free, sugar free and additive free. They bring their special food whenever we celebrate a religious feast with a "feast". This may be something to ask at support groups and start on your own now as well as removing all unnecessary stimuli that may cause anxiety.<br /> On the other hand, these children have some great strengths. Be sure to find and watch the Academy Award winner Temple Grandin remembering that this woman grew up at a time that autistic children were institionalized and women in general didn't go to vet school.<br /> <a href="http://www.hbo.com/movies/temple-grandin/video/trailer.html" rel="nofollow">http://www.hbo.com/movies/temp.....ailer.html</a> </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367944 Thu, 16 Jun 2011 15:02:57 +0000 taylor 367944@https://youlookfab.com/welookfab/ <p>Julie, I can't offer anything new...just support and the very best for you and precious little Teah!<br /> And know that you are doing eveything possible for her! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367924 Thu, 16 Jun 2011 14:31:42 +0000 rae 367924@https://youlookfab.com/welookfab/ <p>I'm sorry to have no experience with this condition, but I do have a very close friend with bipolar disorder, and even in our healthcare system, it was very difficult to make anyone sit up and take notice and provide the help he needed. His family succeeded by doing exactly the things you are doing: being persistent and of course knowledgeable about your daughter's rights to a certain level of care. Big hugs to you; I hope all these sickly people get well soon so they can attend to Teah! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367923 Thu, 16 Jun 2011 14:30:44 +0000 mrseccentric 367923@https://youlookfab.com/welookfab/ <p>Hey chewyspaghetti, my nephew is 14 and has autism - ah, the thrills of puberty :)</p> <p>RoseandJoan - excellent advice here. i've had various severe chronic health troubles for the past 30+ years, so i've had to deal with all types of health pros and systems, and i can vouch for the wisdom in these comments. research, taking notes, writing down your questions before an appt. and checking them off as they are answered, support groups on and offline, being persistent - all worth their weight in gold.</p> <p>i have found that being persistent, calm, and showing that you are taking notes and following up is generally more effective than getting loud and emotional (tho sometimes you just have to throw a fit in public). docs and nurses are trained to be calm and left-brained and take notes, so that when you behave the same way they are more apt to see you as an equal and take you seriously. and they are people, too - the emotions of a person can overwhelm what the person is saying, so they just can figure out that you're upset but not much else. however, just try different tactics if you're not getting results and see what works.</p> <p>one thing that hasn't been mentioned yet. some people find it helpful to audio or video tape a visit, especially something like a trip to a specialist who you will only be able to see once or twice, or when a therapist is teaching you techniques to use at home with your daughter. if you want to do this, just ask. many professionals want to help people get the most out of their time together.</p> <p>and i completely understand your frustration in trying to get a diagnosis. at the same time, if it takes longer to get a diagnosis, part of that could be because your daughter is high functioning, which is a good thing! here in the U.S. kids aren't eligible for certain therapies to be paid for unless they get certain diagnoses, which is the downside....i don't know how it works where you are. if you are able to document that your daughter is having trouble walking or talking, for example, you may be able to get her help with those specific areas without a diagnosis. my nephew is 14, he wasn't diagnosed with autism until a couple of years ago (he'd had various labels, mostly developmentally delayed). but he got help anyways. </p> <p>the last couple of years (unrelated to diagnosis) he's been in a different school and he has learned so incredibly much!!! the last year every time i've seen him he has STARTED conversations with me several times! he NEVER started a conversation with me before then, tho he would talk to me if i engaged him. so even if little Teah doesn't get a lot of intervention right now, there are plenty of possibilities for her to blossom as she grows. that's the thing with kids, they're always growing and changing, and it's hard to wait to see what happens!</p> <p>hang in there and keep fighting - it's a scandal the way people have to fight to get help for their kids these days, but you can do it. take care, steph </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367921 Thu, 16 Jun 2011 14:20:01 +0000 Queen Mum 367921@https://youlookfab.com/welookfab/ <p>Julie~ I"m sorry for your frustration. I do hope that you get some results and attention soon. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367918 Thu, 16 Jun 2011 14:17:08 +0000 Angie 367918@https://youlookfab.com/welookfab/ <p>My heart goes out to you and Teah, Julie. I can't top the killer wisdom that's been shared here, but know that I am thinking of you and wish you the very best. Teah is a very lucky little girl to have a devoted Mummy like you. ((HUGS)).</p> <p>Good luck and I'm sending you positive energy all the time. </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367908 Thu, 16 Jun 2011 13:57:43 +0000 Patty 367908@https://youlookfab.com/welookfab/ <p>Oh and check out Carly's voice--a beautiful autistic girl's site--she does not talk but has learned to write her thoughts on the computer--a real break thru in giving none speaking autistics a voice!!!!</p> <p><a href="http://carlysvoice.com/" rel="nofollow">http://carlysvoice.com/</a> </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367905 Thu, 16 Jun 2011 13:51:46 +0000 Patty 367905@https://youlookfab.com/welookfab/ <p>Tons of good advice for you here Julie!<br /> Particularly about the taking notes part---once you get going in the therapies and programs you are thrust into the world of anachronisms, file numbers, codes and short form names that it's real easy to get confused!! And these reps and therapists use them freely like you know what the heck they are talking about but you are not of their world so get the that info straight from them and have them explained!!!!!!!!!!!!!! I have a hard of hearing, basically deaf son who wears hearing aids and I found this (as well as the stalemates) most frustrating, confusing and overwhelming. I was brought to tears so many times feeling like a fool thinking I should just know it coz it seems like common info.<br /> Keep poking them Julie--autism does best when discovered early and continue insisting she be seen sooner than later--you're doing the great job right now checking up on appointments!<br /> My son had his first therapy session in house on his first birthday then graduated out of the program when he hit Junior Kindergarden but there were no junior school programs for him to move into and he still had limited vocabulary and I'm no pro at therapies other than continuing what I knew so I started shaking some trees and found him continued therapy but it didn't exist until I got the right people involved so keep calling and find yourself a parenting group in your county/town who can tell you local people/groups to call.<br /> All the best Julie and Ben--an involved parent is the child's best help!! </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367890 Thu, 16 Jun 2011 13:41:20 +0000 Aunty 367890@https://youlookfab.com/welookfab/ <p>Julie my heart goes out to you.<br /> I work for a charity that has residential homes and a day service for adults with learning disabilities ( in my opinion the most beautiful of people ) All I can tell you is you have to go to war. You fight every inch of the way untill you get what Teah needs. Keep a log of dates and times of phone calls, also who you spoke to with a short note of the conversation. I am afraid it is a fact that the person that screams loadest is the one that is heard!<br /> Keep us up to date wont you, and don't let yourself get over stressed xxxxx </p> https://youlookfab.com/welookfab/topic/ot-playing-the-waiting-game#post-367878 Thu, 16 Jun 2011 13:25:21 +0000 anne 367878@https://youlookfab.com/welookfab/ <p>Big Hugs from me too Julie. You have received some great advice in this thread so I won't replicate, but wondered if you had read the book A friend like Henry, by Nuala Gardner, who also lives in scotland and has two children with Autism. She really had to fight to get treatment for them - it was a very inspiring read and may have some leads for you. </p>