Amirah Posted September 5, 2012 Share Posted September 5, 2012 I was really hoping y'all could send some prayers my way. we got an appointment with a psych. who specializes in ASD on Thurs. not sure if we will get a diagnosis or just a consultation, but hoping for something helpful to come out of it. And we can get closer to getting some services. Son(almost 3.5) is regressing again and lost the few words we worked hard on. His behavior is starting to get unmanageable,aggressive and He has starting punching himself in the face. And i am just really getting burned out and tired. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted September 5, 2012 Share Posted September 5, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted September 5, 2012 Share Posted September 5, 2012 :grouphug: I'm sorry to hear that your family is going through this. We will keep you in prayer. I'm glad you have a appointment soon.:grouphug: Quote Link to comment Share on other sites More sharing options...
Halcyon Posted September 5, 2012 Share Posted September 5, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
dsmith Posted September 5, 2012 Share Posted September 5, 2012 Prayers coming your way!:grouphug: Quote Link to comment Share on other sites More sharing options...
PeterPan Posted September 5, 2012 Share Posted September 5, 2012 I'm sorry you're having a hard time! Is he getting any OT or other services? You know this is totally off the wall, but my ds was just going nuts with sensory and it chilled after we got him back on coconut milk. The coconut milk has good fats, carnitine for the low tone, etc. I don't know, that was just one of those weird things. I also have an indoor swing and things for sensory. Has he been getting OT, or is this appointment the first step in getting that? For the speech regression, have you looked into PROMPT? The speech regression is frustrating. Well I hope the appointment for you Thurs. is helpful. Are they going to give you any immediate feedback, or will you have to wait a couple weeks? Quote Link to comment Share on other sites More sharing options...
Amirah Posted September 5, 2012 Author Share Posted September 5, 2012 I'm sorry you're having a hard time! Is he getting any OT or other services? You know this is totally off the wall, but my ds was just going nuts with sensory and it chilled after we got him back on coconut milk. The coconut milk has good fats, carnitine for the low tone, etc. I don't know, that was just one of those weird things. I also have an indoor swing and things for sensory. Has he been getting OT, or is this appointment the first step in getting that? For the speech regression, have you looked into PROMPT? The speech regression is frustrating. Well I hope the appointment for you Thurs. is helpful. Are they going to give you any immediate feedback, or will you have to wait a couple weeks? He is not currently getting any services other then my at home attempt to do some ABA and speech. we did have consultations for private services but he needs alot and for OT,speech, and ABA we are looking at over 500 a week which we can't afford at all. He is on a waiting list for speech he should come off it sometime next summer. once he has a diagnosis we can put him on the waiting list for other services. as well as possibly get some funding to pay for services until we get off some waiting lists. wait list are a yr or more for any type of service here in ontario. i am not sure if we will get immediate feedback or not. a friend of my DH got his friend who is a ped. to refer us to this psych. at the hospital( for thurs.) to help us along ( we are on a waitlist for an assesment for 1-1.5yrs). he has texture issue and is so strict on foods he won't take anything but 3.25% milk in one bottle with the same green lid and nipple if you change anything form that he will not drink anything period. he is so set on his ways and weird about everything we did look into prompt but his receptive language is so severely delayed he doesn't even understand basic instructions yet(other than sit,eat,put back,go). they suggested we start with OT and ABA and then speech. because with his behaviors and his receptive delay we would lose alot of money with no benefit because he can't make it through a session. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted September 5, 2012 Share Posted September 5, 2012 :grouphug: I hope this appointment opens up all these doors for you! Quote Link to comment Share on other sites More sharing options...
mybluesky Posted September 5, 2012 Share Posted September 5, 2012 :grouphug: I hope this appointment opens up all these doors for you! :iagree: The wait times are so frustrating, aren't they? My ds has sensory issues and we feel might be on the spectrum. One of the clinics our insurance covers has a 2 1/2 year waiting list, and the other has no openings at all!! Ugh!! So glad you were able to get in sooner, and I really do hope it helps you get services sooner. Just as another thought, do you possibly have a University nearby that might offer services through their OT or Speech clinics? It can be a very inexpensive option. Oh, and I also wanted to add...my son punches and slaps himself in the face all the time. If I stop him, he tries to use my hand to slap himself (!). I have seen him try to get other kids to hit him in the face too. It is definitely a sensory thing, but so hard to see!! Quote Link to comment Share on other sites More sharing options...
RamonaQ Posted September 5, 2012 Share Posted September 5, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Twilight Woods Posted September 5, 2012 Share Posted September 5, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Amirah Posted September 5, 2012 Author Share Posted September 5, 2012 :iagree: The wait times are so frustrating, aren't they? My ds has sensory issues and we feel might be on the spectrum. One of the clinics our insurance covers has a 2 1/2 year waiting list, and the other has no openings at all!! Ugh!! So glad you were able to get in sooner, and I really do hope it helps you get services sooner. Just as another thought, do you possibly have a University nearby that might offer services through their OT or Speech clinics? It can be a very inexpensive option. Oh, and I also wanted to add...my son punches and slaps himself in the face all the time. If I stop him, he tries to use my hand to slap himself (!). I have seen him try to get other kids to hit him in the face too. It is definitely a sensory thing, but so hard to see!! yeah the wait times are so crazy long. I am not sure about the university thing but i am going to look into it and see if there is something available. and I agree it is so hard seeing him punch himself because he is so little. he uses his hand and if i make him stop he goes to find objects to hit himself with. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted September 5, 2012 Share Posted September 5, 2012 Do you have the Out of Sync Child to try to do some sensory yourself? Some things you can do with things you have at home (swing in a blanket, etc.), and some things like vestibular you can do at the park on the single line swings there. We have a single line swing in our basement. You could try putting some good fats in his milk. Will he take them that way? There's also a powder (Nutriveyda) that some people on the apraxia yahoo group use with their SN/feeding disorder/spectrum kids to get in extra nutrition. Maybe he could tolerate that added to what he's used to? I think it comes in vanilla or chocolate. They have small samples to try. Just saying this because it does seem to make a difference in the severity of my ds's sensory-seeking. Quote Link to comment Share on other sites More sharing options...
Guest Posted September 5, 2012 Share Posted September 5, 2012 (edited) I am so sorry Amirah :( and even more sorry that you are not getting the services sooner, when your little guy clearly needs them! Not sure if you have seen it but I started a thread on resources for kids with autism a while back. I started it with people like you and me in mind, that cannot afford private therapies. Some of the resources you should be able to find at your library. Not sure if it is helpful at all but I thought I would mention it. You and your family will be in my thoughts and prayers :grouphug:. Edited September 5, 2012 by Guest Quote Link to comment Share on other sites More sharing options...
justamouse Posted September 5, 2012 Share Posted September 5, 2012 :grouphug: Prayers being said. Quote Link to comment Share on other sites More sharing options...
Amirah Posted September 5, 2012 Author Share Posted September 5, 2012 Do you have the Out of Sync Child to try to do some sensory yourself? Some things you can do with things you have at home (swing in a blanket, etc.), and some things like vestibular you can do at the park on the single line swings there. We have a single line swing in our basement. You could try putting some good fats in his milk. Will he take them that way? There's also a powder (Nutriveyda) that some people on the apraxia yahoo group use with their SN/feeding disorder/spectrum kids to get in extra nutrition. Maybe he could tolerate that added to what he's used to? I think it comes in vanilla or chocolate. They have small samples to try. Just saying this because it does seem to make a difference in the severity of my ds's sensory-seeking. i am going to look into all of this and try it out thanks so much Quote Link to comment Share on other sites More sharing options...
Amirah Posted September 5, 2012 Author Share Posted September 5, 2012 I am so sorry Amirah :( and even more sorry that you are not getting the services sooner, when your little guy clearly needs them! Not sure if you have seen it but I started a thread on resources for kids with autism a while back. I started it with people like you and I in mind, that cannot afford private therapies. Some of the resources you should be able to find at your library. Not sure if it is helpful at all but I thought I would mention it. You and your family will be in my thoughts and prayers :grouphug:. thank you for starting that thread and reminding me of it i will check it out tonight when i can make notes etc. thanks everyone Quote Link to comment Share on other sites More sharing options...
Guest Posted September 5, 2012 Share Posted September 5, 2012 thank you for starting that thread and reminding me of it i will check it out tonight when i can make notes etc. You're welcome! I hope and pray you get some answers and services, soon. Quote Link to comment Share on other sites More sharing options...
Geo Posted September 5, 2012 Share Posted September 5, 2012 (edited) I was really hoping y'all could send some prayers my way. we got an appointment with a psych. who specializes in ASD on Thurs. not sure if we will get a diagnosis or just a consultation, but hoping for something helpful to come out of it. And we can get closer to getting some services. Son(almost 3.5) is regressing again and lost the few words we worked hard on. His behavior is starting to get unmanageable,aggressive and He has starting punching himself in the face. And i am just really getting burned out and tired. I don't know where you live, but if it just happens to be North Carolina, there is a place named the "T.E.A.C.C.H" Center. They have 7 locations aound the state. It is for autism and provides clinical services. The services are free, as it is a research-based program out of UNC's Medical School, I believe. The wait-list is long, a year or more...but it is free. They also provide training and support for parents. http://teacch.com/ :grouphug::grouphug::grouphug: Geo Edited September 5, 2012 by Geo Quote Link to comment Share on other sites More sharing options...
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