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Hi everybody, I guess I am writng because yestersay I did not have a good day. I am thinking alot about why my autistic 5 yr old is not that much better off. We found out 2 yrs ago and I have been getting him treatment. School at first then a home program and for the last 6 months and ABA one for about 25 hrs wk. I get speech oand OT and I just thought he would be better off by now. My speech therapist was telling me yesterday that I sort of have to accept that he will never be normal. This has been especially hard becasue for the past couple years I had consultants whom I no longer have tell me he is not that bad off and they could see him functioning. Maybe they thougth this because he was younger and assumed he would progres better than he is. Now we got his recent cars score a 40 (it used to be 37, how did he get worse with intervention?!) and the speech therapist tells me this. How do you ever get over that your child will never be or live normal? I guess i have my good days but lately I guess becasue my hope is diminishing, I have had many more bad ones. It also doesn't help that my son has a twin that is typical and it is hard to watch him to all the "normal" stuff and my autistic guy will never do these things? How is life ever happy when you don't have your child's health? SOrry to go on forever- THanks. ↓
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| Name: crofty | Date: Feb 6th, 2008 8:40 PM |
Hi Dianna, so sorry you are going through a tough time at the moment. I know exactly how you feel, i have some good days but mainly generally on the whole bad at the moment. I have a 6yr old who is aspergers and a 4 yr old who is non-verbal and has a lot of complex needs. We dont get speech therapy, but we do get OT although i dont think it is helping much. You would think my youngest has a split personality if you saw him, he can turn from contented and happy to a crying/screaming curled up on the floor little man in no time. He had his support worker in tears yesterday and i feel sick with worry. He starts full time school March 31st and i was hopeing i might see some tiny steps of progress, but if right now is anything to go on it feels like that will never happen.
Sorry to sound so down too, but like you that's how i feel today, tomorrow depending on how he is i may be a little better.
Fingers crossed that some small positive happens for both of us to help keep us going, we need it!!
Take care
Crofty ↑ |
| Name: BlakesMom | Date: Feb 7th, 2008 5:53 AM |
Hi Diana,,,,,,,,,
What an extremely difficult time for you. I have been 'in and out' of your current emotional state many times with my son and truly feal your heartache. My son, Blake, will be 3 year old this month and was diagnosed at 18 months in the sever range. At 18 months he was self abusive to the point he was busting his mouth open or inflicting such force to his forehead that he had 'goose eggs' constantly. We overcame that obstacle only to progress to him being extremely aggressive towards myself, my husband and his in home therapists (up to 300 x's daily).......but at least he was not hurting himself. Currently, with MUCH therapy and much consistency, he is ony aggressive approx 2x per day. There are so many other issues, though....he is nonverbal, he self stims constantly...is totally withdrawn 90% of the time. He refuses to engage in activities.....he cannot handle environments outside of our home.......blah, blah, blah! Our family counselor offered some advice that has truly been a blessing in my dealings with Blake. She told me to keep a journal........to document EVERYTHING that is happening and to reflect back on it when I am feeling down. I am telling you.....the progress I mentally saw.........was NOTHING compared to the progress I saw in writing. Being a parent is hard enough.......and then throw in a child with Autism...........! It is hard to see all the baby steps your child has made when you deal with all the cards that are dealt with the diagnosis on a daily basis. Sorry to go on forever...........Hope I helped. I would be happy to chat with you a bit more in person if you'd like. My son will start school soon and I could use some guidance in that aspect................!
Take care and be strong................Cindy ~~~ [email protected] ↑ |
| Name: crofty | Date: Feb 8th, 2008 10:19 AM |
Hi Blakesmom I really feel with you having to cope with the aggression at such a young age.
My 5 yr old has become really angry all the time, he throws things has tantrums and never seems to be content.
He used to be fairly manageable at nursery but now they have to drag him in and he is horrible there aswell.
I am so scared of this developing any worse, I am struggling to cope now. Any words of advice - PLEASE. ↑ |
| Name: dianna | Date: Feb 8th, 2008 12:46 PM |
| Hi Croft, and Blakesmon, thanks for your kind words. I am seriously considering the journal idea. I just wish I had a crystal ball!!!!! LOL! DOn't weall? I just really hope he starts talikg more and functioing. I'ts hard to not see him normal... ↑ |
| Name: oilybabyman | Date: Feb 8th, 2008 9:04 PM |
| IT WONT GET EASIER TO ACEPT cuz when u child is autistic it jhard yo acept and u feels really bad and u r like : wowo i feel bad" ↑ |
| Name: phc64 | Date: Feb 9th, 2008 11:23 PM |
Hi Dianna,
I have 15 year old twins ,boy/girl. My son is autistic, his sister is normal.It is hard on so many levels, especially for my daughter, who never had that "having a twin to play with" experience. Most of the time she is in denial and doesn't really talk much about it. but I know, she has a lot of feelings and anger on the issue. Every now and then we wonder what it would be like to have a normal son. My son can be a real joy, but other times he is taking up every ounce of energy we have. Looking back, he has changed quite a bit over the years. When he was little we could hardly go anywhere with him. He is more social and accepts new situations more easily than he used to.Of course he at an age now, where we have to worry about his future and where will he live when he is grown. That is what worries me most, because he still seems like my little boy. It never really got easier for us to accept our situation, but we got used to it I guess. I pretty much live life one day at a time and try to enjoy the good times as best as I can. Not the greatest advice, but that's how I get through it, I guess.
Good luck!
Petra ↑ |
| Name: dianna | Date: Feb 12th, 2008 1:11 PM |
| Hi Phc64, thank you all for your words od comfort. And they are a comfort. Phc64, may I ask you, what was your son like when he was 5 or so? Do you remember? My biggest fear is that mine will not talk. He actually talked more at 18 mos. than he does now. He does have a speech therapist, and he does say words but nothing like phrases. Could your boy talk now? How is your son functioing now? I know they are all different, but it gives me hope to hear the outcomes. I also know how hard it is for the twin sibling. My little guy always wonders when his brother will play with him? thanks in advance- Dianna ↑ |
| Name: dianna | Date: Feb 12th, 2008 1:13 PM |
| Oh, and thanks to all of you for your ideas and thought and well wishes! It means alot. ↑ |
| Name: lvmybz3 | Date: Feb 13th, 2008 7:42 AM |
Hi Dianna
I have a five year old son who has autism. And lately I also feel like he is not getting any better. In fact maybe worse. For instance it takes me a couple of times of me yelling his name just to look at me. Before this was not an issue. He will not say hi or bye unless i make him, and then it is just forced. The frustrating thing is I see the kids in his class improving and he just is not. I really know what you are going though and if you want to email and vent to someone. my adress is [email protected]. Good luck. ↑ |
| Name: amarbuyan | Date: Feb 13th, 2008 11:22 AM |
Dear Dianna,
I have an autistic boy, who is 5 years old. I'm sure that your son makes progress eventhough he may be late to compare with other children. I think that progress is the most important. I say to myself: "he lives his own life and we are just to make his life happy".
I have more hope in future after studying about RDI approach. Have you tried it? I'm from Mongolia. In my country almost nobody knows autism. My son is still not diagnosed by our doctors. We were in Singapore and heard about RDI and next week we are going to attend seminar for parents. if you are interested please visit rdiconnect.com. I haven't started rdi yet, but it sounds really promising. ↑ |
| Name: phc64 | Date: Feb 16th, 2008 2:29 PM |
Dianna,
I hate to tell you this, but my son (15) does not talk at all. He used to have some language at the very beginning, but never phrases. I don't want you to give up hope though, because there are so many cases where it changed for the better. My son uses some signs and pecs, but it is definitely a source of frustration when there is little communication.
At 5 years old my son was very hard to manage, he ran in every direction and was more withdrawn. At the same time he was the cutest little chubby cheeked, blond curly haired boy you can imagine! Finding the right school placement has always been hard, since assistants in our local school dist. don't receive enough training ( I work for the Dist. so I know for sure ), and of course they are underpaid! He attends a private school now, but even there it is a constant up and down.
I don't mean to be so negative, we do have wonderful moments with our son as well. I guess we have given up hope for some type of miracle a long time ago. We do the best we can with him, but it doesn't feel like it's enough. Like I said in my last post, for my daughters sake I wish life was more "normal" in our house.
Take care,
Petra ↑ |
| Name: crofty | Date: Feb 16th, 2008 7:54 PM |
| Hi Petra, you said your son was very hard to manage at 5. What did you do to make this improve or did it just get more manageable on its own? ↑ |
| Name: phc64 | Date: Feb 16th, 2008 9:58 PM |
Dianna,
I think it was a slow process and alot of different people working with him over time, so he became a little more social over time. Also, he used to have trouble getting to sleep and sleeping through the night. At 5 years old he had an overnight EEG done and it showed abnormal spikes, so the neurologist put him on Depakote. That helped alot.
It sounds like you are doing all you can and you've probably tried alot of different things. I know it never feels like it's enough, but you have to give yourself credit for dealing with this very stressful life. Are you getting any help or respite so you can do things for yourself? I wasn't very good about looking or asking for help and I often felt isolated and run down (still do sometimes). I wish I had looked for forums like this one when my son was little. It helps to hear from people who are in the same boat
Petra ↑ |
| Name: dianna | Date: Feb 17th, 2008 2:19 AM |
| Hi Petra, thank you so much for answering my questions. Yes, I know it is really hard and frustrating. Is your boy toilet-trained, and if so when did he and how? We are working with my little guy now. Petra, may I ask, overall how has he transformed over the years. Better, more in tune, worse? I am just curious. I know how hard it is with a twin sibling. His brother always asks me when will his brother talk and play with him? Boy. sometimes life just isn't fair is it? I went through invitro to have these babies and now one has to have autism. Well ,I guess one day at a time. Write back when you get a chance and take care- SIncerely, Diana ↑ |
| Name: phc64 | Date: Feb 18th, 2008 9:47 PM |
Dianna,
It took me a while to write back. The past weekend wasn't so much fun.. Plus, I live in Dekalb, IL and we had a shooting at our university last Thursday. Even though we are not personally affected I feel more stressed than usual.
Anyway, to answer your question: my son is not toilet trained, don't ask me why. It's not because we never tried....This is not typical, I think.
Overall my son seems more easy going. He is a good listener and makes alot of eye contact. To the outside world he probably still looks very jumpy and hyper, and he is very active in general. Still, when he was little he was worse, cried easily when we went places. Of course he relies alot on routine and has OCD tendencies. I guess we just learned to live with all that.
Petra ↑ |
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