The last few weeks me and Dallas have really made and effort to work harder with Ty on his speech. Right after Christmas we got a new speech person. It seems none of them have magic wands and it is not what I thought it would be but we moved to have all of his therapies in one location.
He has private therapy for 3.5 hours a week and he gets physical, occupational, Music therapy and speech. Currently we have combined his PT and OT together. It works well for Ty to have them together. They work him very hard and he loves both of them.
Music therapy and speech are both working on getting a response and words from him. This has been a long haul. It is such a bumpy ride. Everything you need in life seems to rely on that one key that is missing.
We need communication.
A while back we tried Signing time and he didn't like it. We bought more Baby Einsteins signs to see if we could get anything. He has picked up and does use a few signs that make the frustrations a little less but full communication isn't there. Even with the small amount of signs we are still limited in understanding Ty.
Since we have him in the Preschool for special needs at the local school district I thought I would start there for some feedback. While I love his program and his IEP I have no loved the lack of feedback from various sources so I figured this was where we should start.
The consensus was yes he is understand and yes he is smart, no we can't get him to talk yet. In fact his speech person asked if he even makes sounds at home. I was a little taken back. Yes he has some sounds but apparently he won't for the speech lady.
I was talking to the speech lady and telling him the words and sounds he makes here at home and she was shocked because he makes NOTHING there. I was a little upset because in 5.5 months he has been there she hasn't CALLED or left a not in his notebook I send EVERYDAY! She hasn't spoken to our new speech people either. Why would you not communicate if that is what we are trying to ask Tyler to do?
I was so upset that all this time they cant' get him to comply with their request and that she didn't even know that he can do some of the things they are "asking". Isn't your thought as a educator or a therapists working in a team to let the parents get involved. I grew up in an education family and I am willing to do whatever I need to do to get him the help he needs to succeed. The only thing I need help with is that you TELL ME!
It seems that sending a note letting them know we need more feedback to help and to provide the best services for Ty is what was needed. They have all got in contact with our other team of therapist and talked to Dallas and I. In turn I sent a whole bunch of items that Tyler seems to respond to ( like his Barney book) and make noises to ( like his puzzle of animals) for them to use in play and speech to get him to make noises for them
I realize there is no magic wand. I know it takes work. Some day I know we will hear him talk. Till then we pray for small miracles to reach Tyler. To help him express himself. To help him less frustrated and even prayers we can understand what he wants so frustration doesn't set in.
He is smart. He just can't let it out. Any ideas out there to help us communicate with Ty?
6 comments:
Nancy I am sorry you are frustrated. I wish I could say something that would help. We had a similar experience last year with Wesley's IEP, he was in desperate need of OT and it was in his IEP, but his preschool overlooked it for months and he didn't get it until the end of the year which put him even further behind. He is almost 6 years old working at a 3.5-4 year level. I do think that persistence and consistency are the most important ways to get a child to learn something that is hard. Again...sorry it's so frustrating and stressful =(
I so wish that there was a magic wand. If you find it, will you please send it to me when you are done??
We're having the exact same frustration with Oliver. He's smart. He understands us. He doesn't say any words besides "mama" (and that doesn't always mean me) and doesn't really get sign language either. And we both get frustrated. I talked to you about the PECS, that has helped a lot. I need to do another bunch of pictures this week before he leaves EI on his birthday. He's got down the PECS for chocolate milk, oatmeal, broccoli, crackers (2 different kinds) fruit snacks, and yogurt. So far, all foods, and I think he's ready to move on to non-food items. But since I know you are already doing PECS, that probably isn't much help.
One day (fingers crossed) this non-communication will be a distant memory, like locomotion, and we'll sit back and think, man, it wasn't that long ago that he didn't speak at all, and now look at him! And like so many other learned skills, we'll never take their words for granted. Hang in there!
Non-communication was also your BIGGEST pet-peave on our mission too. You always told me that people never gained understanding of each other and needs without communicating them. I agreed with you from the start. I think thats why we got a long so well because we ALWAYS were talking to each other. I hope communication gets better with you and the doctors. Maybe then communicatin will get better with you and Tyler.
Do they have a AAC device for visually impaired? We looked for one for Caden in regards to autism. There is a thing through NAU that you can try one for free for a couple of weeks before you invest thousands of dollars for a communication device your kid won't even use. They have some that are really advanded that look like game boys. We were going to go that route.
PECS is another but we had to use real pics not the computer images. If you really push that with schedules and choices...which I know you do.
I'm sad he doesn't do Signing Times. Which one did you try? The old ones are really lame. The newer ones are better.
I know you have to worry about weight gain and stuff and I know we both have kids that are very selective about their diets but the big change for us was when Caden went off Dairy. We are strict about dairy...less strict on wheat. He had labs done to see where he was lacking as far as vitamins and minerals
I totally understand your frustrations!! Times 2! When my step-daughter was first diagnosed with autism, we started her on the Brainchild Nutritionals vitamins and minerals. (www.brainchildnutritionals.com) In 2 weeks her speech nearly doubled! Then when we started her on the GFCF diet, it was a miracle!! Even her teachers and all her therapists have been impressed with her progress. The newest thing she says now, which we love, is when she doesn't know what/who something/one is she says "what's it's name?" This time last year, all she said was a total of maybe 10 words, and now she literally repeats everything she hears! She even mimics her movies!
As for my little Jack, I have not been able to put him on the diet since I am limited as what he will eat. His diet only consists of pretzels, nutrigrain bars, pop tarts, eggos, Gerber graduates (only the chicken and rice and turkey stew) and sometimes chicken nuggets. But I did start him on the same vitamins 3 weeks ago, and once again, there is a night and day difference. Even all his therapists say he is like a completely different child! He is still learning signs, but his babbling is A LOT more and he is starting to make noises that sound a lot like words! Also his behavior has improved tremendously!! I can't wait for OT to help him with his texture issues so hopefully I can get him on the diet too.
Anyway, that's our experience. Believe me, I KNOW how you are feeling! The best thing is, when he does start talking and you can't get him to stop (as is now our case with Tyla) you will LOVE it! Even if it might drive you crazy that they say the same thing over and over and over again. You will NEVER want to tell them to be quiet!! And when I hear people complain about "not being able to get their kids to shut up" I just cringe and tell them they need to be grateful that they can even talk!!! Even if it's to tell them "NO"
Wow, that was really long!! Good luck! It will get better! Just keep up the good work, mommy! and remember Heavenly Father is here for us!
This is just like Aloshua... He can say some stuff and make sounds but when it comes time for the therapist to hear him no way.... I know Aloshua understand stuff and I know he wants to say stuff sometimes but I dont think he knows how to put two and two together to get the words out.
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