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| So C is likely autistic; and I'm not handling it all that gracefully. | |
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| Tweet Topic Started: Apr 4 2013, 09:10 PM (2,316 Views) | |
| FlashGordon | Apr 4 2013, 09:10 PM Post #1 |
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We are in the middle of an intensive multi-part screening, which will culminate with a meeting the beginning of May with all his docs and therapists. I keep telling myself that this time last year, we were afraid he had a brain tumor, so in the scheme of things, autism is not that bad. Right? But it is hard.... it hurts my heart to see him struggle. He spends most of his days in his own little world. He is not an unhappy child, at all. He is quite sweet, mild mannered, gentle. But he has very little ability to connect or communicate effectively on even a basic level. He is verbal but it is mostly repeating back what he hears. He has 4, two word phrases that are meaningful. He has an unbelievable memory and can do 50 piece puzzles on his own, and is obsessed with numbers and letters. He knows spanish, can recite countries, but there is no context. He can't tell you if he is hungry, wet, tired.... What he did 5 minutes ago, or a day ago. He doesn't respond to his own name, he doesn't hug, he doesn't answer questions, or initiate any kind of spontaneous communication of any sort. As a mom, that is tough. Also, he has a weird order to life, that must be followed at all times. For Marc and I now, it is second nature... but if it veers off path even minutely it causes him great anxiety. It means one of us has to be with him, 24/7, literally, or he becomes frantic. He has a lot of sensory issues that make everything confusing. His neuro system does not process things in a way that makes sense, to him, or to anyone else. Marc and I have come to grips with it, over the last 6 months. I think I am quite depressed about it, though I try to just pretend I am not. I live in a constant state of fear that he will regress further, so I spend a lot of time clinging to whatever pieces of him I DO have now. I think I also blame myself. What did I do during my pregnancy to cause it? To Marc's credit, he has handled it all quite beautifully, and far better than I, that is for sure. M loves him to pieces and is the perfect big sister, forever patient, kind and empathetic. My family has not dealt with it well at all.... My father and my brother, especially, and that hurts. I want them to love him for who he is, not what they wish he could be. They are the types who think men play football, drink scotch, have important jobs, make lots of money. Any sign of weakness is not ok. Marc's family is in denial, in England you don't talk about things like this, in fact you wouldn't even acknowledge them! On top of that, he is still struggling with GI issues, and is back on formula. The good thing is, the formula seems to give him what his body needs, and I do seem him more "interactive" when he feels better. That makes me hopeful... I love him for who he is, and whatever he is. I am often fascinated by the way he sees the world and how he interacts with it. But I worry for him, and I am also entirely overwhelmed trying to navigate through the mess that is developmental pediatricians, therapists, school districts, paperwork, blah blah blah. I keep saying, eh it is ok, maybe he will be brilliant and go to Harvard and cure cancer! Or maybe he will live with me forever and need constant care. Either way it doesn't matter, but I want the world to be kind to him. I'm sorry to be all blah blah personal here, as I swore I would stop doing that. I'm not looking for pity or sympathy, just needed to vent. The "a" word seems to be one that makes a lot of people uncomfortable..... and I have been reluctant to talk about it in real life. |
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| Kikki | Apr 4 2013, 09:21 PM Post #2 |
It'll be an adventure! We're going on an adventure!
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First off, huge hugs. No matter what, it will all be Ok. The transition is the hard part, the not knowing. Autism is a weird disorder to say the least. And every case, every form, so unique. But on the bright side, now professionals know so much about it and are learning so much about it. I have known few autistic kids (and a couple with aspergers) and the progress they can make is really amazing. You and Marc are going to give him everything he needs to go as far as he can. Autistic people often take unique but fulfilling paths in life, I know he will be one of those |
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| Fish Cheeks | Apr 4 2013, 09:29 PM Post #3 |
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I'm sorry that you are going through this, Flashy. I have no words of wisdom, as I have no kids and no experience upon which to draw. Just big hugs to say that you are a GREAT MOM and with you and Marc and M, Baby C has the best chance of having the best of whatever his life can possibly be. Big hugs to you! 
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| vxf111 | Apr 4 2013, 09:33 PM Post #4 |
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I have no experience. So hugs to you, and how lucky he is to have immediate family that is so focused on what is best for him. |
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| gunnar | Apr 4 2013, 10:21 PM Post #5 |
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Love you! Colt is lucky to have you guys as parents! I agree there are many advances in handling this! Big hugs my friend! Kisses too! |
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| OpticalIllusion | Apr 5 2013, 02:51 AM Post #6 |
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I have minimal experience with Autism. My closest friend works with autistic kids and we have had a few that have ridden with us. They were all the best kids. So much fun in their own way. |
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| RHowell | Apr 5 2013, 03:34 AM Post #7 |
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First and most important big hugs to you. If you are a reader, try 'Horse Boy'-about a father's efforts to make progress with his autistic son by taking him horse back riding across Mongolia. It's a great story about coming to grips and making progress with a severely autistic son. And the power of horses. Edited by RHowell, Apr 5 2013, 03:35 AM.
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| JanM | Apr 5 2013, 03:47 AM Post #8 |
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Off visiting Candy Cave, be right back.
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I'm sorry to hear this, on top of the GI issues. I know it's rough to accept, and like any other issue it takes a lot to get to the acceptance, and move forward. Remember there are tons of resources out there, and support groups and research. You and your husbands are great parents, and I know that with your help Colton will have all of the love, support, and every help you can get. The family will just have to grow up, accept and get on with it, and it may take them a while longer, because as you said, they have to get over the idea they have of what a man should be. And it could turn out to be a sensory disorder or some partial frequency loss in hearing or something, not autism. You are not to blame for whatever this turns out to be, and neither is Marc, so stop beating yourself up about it. |
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| Trialbyfire | Apr 5 2013, 03:48 AM Post #9 |
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First of all, no matter what - you didn't *do* anything wrong, even though I can fully understand why as a mom, you would wonder. Try not to go down that path, because even if there was something you could have done differently, it's in the past and doesn't help to think about it now. How old is he now? I know that it might not help to hear stories about other kids who seemed autistic, and then "grew out of it" to some extent, but it does happen. My dh's best man has a 1st grader now but at ages 2-3 he went through this same process and had many of the same exact symptoms - essentially non-verbal and not-responsive, but highly intelligent, fascinated with certain things to the obsessive level (e.g. cars), etc. I don't know the he is now *not autistic* or if his official dx was ever autistm, but I know he worked with therapists for a while and may still do (in particular speech therapist comes to mind). I don't see the mom or kid often, but I distinctly remember telling her not to try to focus on comparing him to other kids, and just watch celebrate his every development in the order it comes. He is now in regular school, plays mad sports, and in most ways (if not all ways) is as normal as anyone else. The brain is a weird and mysterious thing, and in C's case he's had some major physical setbacks so it is possible that he will just need more time. You can only do what you can control, so having him screened, and talk to/work with therapists is what you need to do now, so try to focus on that. Do what you are doing -- loving him for who he is, not who he is not. And try not to be put off by the family members who aren't supportive. That sucks.  The internet is a great thing at times and scary at other times. But maybe you can find an online support group and listen to other parents and maybe they have suggestions to either find help/therapy/local groups, but also maybe to see what they say about how to manage your fears and worry about the future. They will certainly "get it" and may be able to give you advice/support that we (and other friends) can't provide. Deep breath. I used to work for a couple that owned a business and they adopted a son from Russia that was later dx with fetal alcohol syndrome and had some significant delays and issues. The wife said that her husband worried so much about his future, and would say things like "what will we do...(when he's older and xyz)" and her answer was always "What do you mean *what will we do?* We'll do what we've always done - we'll get up in the morning and we'll love him. What else could we do?" Sounds silly, but she said she just couldn't go through every day in fear. She just had to believe that it would be ok. It will be ok.
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| Lion1024 | Apr 5 2013, 04:11 AM Post #10 |
It'll be an adventure! We're going on an adventure!
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FG - my only words of wisdom are to echo everyone else. Do not blame yourself. It's not going to contribute to you helping Colton or yourself through this and that's what you need to focus on. You will figure this out. That's just what moms do. Take a moment and vent/grieve. Of course that's allowed. And then, you'll move on and figure it out. |
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| MayaTy02 | Apr 5 2013, 04:27 AM Post #11 |
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ditto what TBF said, how old is he now? 2? I can't recall. I don't say this to compare Colt and Ty, but maybe it will help show the progression of developmental delays. My now 10 yr old son Ty was very non-communicative at that age. While Maya was speaking in full sentances to adults, Ty was barely speaking the anticipated 50 words. To the point where we did have to keep track and count to see that he did. I believe he knew 51 words by age 2 or whatever age it was required. Ty always played with balls and cars. He did not like to be distracted from them, he would throw a tantrum if you took them away or it was time to leave the house and he would be completely disengaged from everyone while he was doing it. It was very noticable to us, because he had a twin who was entirely unlike him... and so significantly delayed in comparison with her. When he went to pre-school, the head of the program pulled him out to be looked at by an outside speech and language therapist. He did NOT talk in school ever, and never left Maya's side. He only played with one toy and god help whoever went near it. At age 4, he could not articulate how to brush his teeth. He had trouble explaining things, verbalizing himself. He ended up having some therapy with that therapist which helped him to organize his thoughts and verbalize... stayed with her through kindergarten. When he went to kindergarten, his teacher called an IEP meeting. He was completely disengaged from his classmates, always looking out the window when they were supposed to be watching the teacher. and when she'd call it was time to go to lunch or out to recess, he was always without fail last in line because he didn't seen to hear the instruction, even after the whole class had gotten up to form a line. We did an IEP, and had the school pyschologist do a full personality analysis, IQ everything, the whole gamut. I still have it, it was fascinating because it was HIM. so truly HIM. He had an IQ of 117, at age 5, which they explained probably meant at least in the 120s because they are not that accurate due to his young age, so he was not stupid. He diagnosis was that he was "somewhere on the autistic spectrum", closer to asbergers but that was not quite it. He was also a visual spatial learner, with some speech and language delays. His official diagnosis was PPD-NOS, here is the link to a description: http://en.wikipedia.org/wiki/PDD-NOS Once we understood what his needs were, and they were quite simple - that in class he needed to sit at the front so he could see the teacher and the board, and she understood how to get him to pay attention, he suddenly started having a better time in school. That coupled with the therapy he got twice a week, made amazing strides. He started improving dramatically once we understood how his brain functioned. By end of 1st grade he was released from therapy and no longer needed any services from the school. By 3rd grade, he was being considered for the gifted and talented program, which he did not end up being part of, particularly because he is still somewhat inflexible and rigid, though he is a straight A student and absolutely brillliant. In my parent teacher conference this year, his teacher said, he has a photographic memory, once he learns or sees something, it's in there for good, but he's an "odd duck"...not that he used those words, but he needs things to be his way, he's the sheriff of the class. He said he will get straight As his whole school career and probably go onto be a successful person in whatever he does, but he is a particular boy. Once you know how to work with him though, he's very easy. Right now, despite not having alot of friends, he is a perfectly normal, adjusted 10 yr old. Getting straight As, playing baseball, and chatting up a storm with anyone who will listen. My point in telling you this story, is what looked so hopeless and scary at age 2-5, is now a perfectly normal, if a bit quirky, bright boy. Because you've identified things so early, you will be able to make strides. Don't underestimate the power of animals when working with kids like this, as RH said, horses, but also dogs. The Guiding Eyes for the Blind, now has a program called "Heeling Autism" that provides a service dog to autistic kids, they are making tremendous strides in this program. Lots of hugs, I know this is stressful and tough... but he is young, and you are starting early. Good luck... thinking of you. PS I should add, I have two very good friends who have pretty severly autistic kids, one of whom has two kids who are diagnosed as autistic. It is very hard I'm sure, but they are both wonderful moms who truly love their kids and both do very creative things with their children to help them. One does have both of her kids in a Pegasus riding program which they LOVE and the other mom spends alot of time skiing with her severely autistic daughter. It is the one thing her daughter can do that makes her truly happy and relaxed, so much so that they bought a house in Vermont so they can spend lots of time there. Edited by MayaTy02, Apr 5 2013, 04:54 AM.
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| Corey94 | Apr 5 2013, 05:49 AM Post #12 |
Off visiting Candy Cave, be right back.
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We're thinking of you FG, and Colt. Parenting isn't for sissies, and you'll take this diagnosis and run with it, it will be the new normal. And it will all work out. Pulling hard for all of you! |
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| MayaTy02 | Apr 5 2013, 05:54 AM Post #13 |
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ha I forgot to mention Ty's sensory issues... he would absolutely freak out when seasons changed and he had to go from long sleeves to short or vice versa. I mean freak out, panic stuff. This also started to get better at around age 5... now I can't get him to take his baseball cap off but at least he doesn't freak out any more LOL. He had trouble with loud noises as well. |
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| Witchy | Apr 5 2013, 06:00 AM Post #14 |
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Not much to say, but I know you will do whatever needs to be done and get him what he needs.
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| Twiceshy | Apr 5 2013, 06:22 AM Post #15 |
Off visiting Candy Cave, be right back.
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Maya Ty could have been writing about my son, except for the early intervention. I won't go into the reasons for it now, but we didn't fully understand what was going on until 4th or 5th grade. My son was uber-sensitive about sensory issues - tags on shirts, loud noises, bright lights, the seams on his socks (OMG the stories I could tell you about shopping for shoes and clothes). But he is the most sensitive, caring, creative, funny, and quirky 20 year old I know. I will confess that I sometimes still have trouble adjusting my thinking and expectations to better understand my son's point of view, but like most parents we do our best because it's what they need from us. Hugs - Colton's in the best possible place with you and Marc for parents. 
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