I am not happy just been told there is a 12 month waiting list to see a Speech Pathologist!!!

Paulette - posted on 10/20/2009 ( 24 moms have responded )

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We have been seeing a Psycholgist for the past 2 months who has diagnosed my son with PDDNOS but she also feels there may be language delays and has recommended we see a Speech Pathologist. So I went to the GP for an EPC referral but when I tried making an appointment to see the Speech Pathologist they advised there is a 12 month waiting list. The receptionist could only suggest that I get out the yellow pages and ring around and see if another Speech Pathologist could see him any sooner but she believed they were all as busy and she knows people going interstate to be seen.



To say the least I am very disappointed that after 8 months of already waiting to get this far I just get fobbed off for another 12 months. Even if I somehow managed to find someone that could see him slightly sooner I can’t even use the GP referral I got the other day because it will have the wrong name on it so I would have to go back to the GP again!



Unfortunately I just don’t feel like there is any point pursuing these services any further as it is all too difficult. It is hard enough just trying to get through each day with the way my husband and 3 children are. I am now wondering if there is any point in even getting a referral to a Psychologist for myself because they are probably just as busy and won’t be able to see me for months either!

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24 Comments

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Amanda - posted on 11/20/2009

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Hi Paulette,
obviously it can be very frustrating and upsetting to hear that your son may have to wait 12 months before he can get any help, but listen to the receptionist and get out that phone book, because you never know what could happen, I was told I would be waiting 10 months to get my son in the see a multi-disiplinary team and it has been two months and I was just told he can start in 2-3 weeks! and we've had offers from two different therapy providers! All you can do is put his name down everywhere and hope for the best, you never know when a company will start hiring new Speech Therapist! Just open up the yellow pages start from A and don't stop calling until you reach Z! Trust me it is worth it!!!!

Kira - posted on 11/19/2009

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Hi Paulette my name is Kira. I have had the same problems as you in getting in to see a speech pathologist. I went through DHS to find a therapist for my son. Also you can search the web or check with schools. Good luck.

[deleted account]

That's terrible. makes me realise how lucky my son was, we did not have much of a wait at all. he had play therapy first and then progressed to speech & langauge therapy after a few months. he has Autism, we are in the UK.

Joan - posted on 11/18/2009

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Hang in there, I have been waiting to for my son to get into a behavior therapist since May 2009. After all the paper work and other issues and we are still waiting. We have the same diagnosis in our case Asberger's Syndrome has not been ruled out and he have several other diagnosis to go with it to include ADHD. My best advise is to READ go to the library, book stores and the internet (Beware of source credibility). You will learn how to balance your life more, learn his/her ways and feel more in control. It wouldn't hurt to contact your insurance provider and find out the names of the SP's (maybe even a little farther out than your area) that are covered under your policy and call them to see the wait times. You may get lucky but don't give up, you are the only advocate your child has also you can request an evaluation through your childs school through IDEA. Don't give up and feel free to contact me if you need more help, I have resources.....Joan Jensen

Julie - posted on 11/16/2009

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Try asking if there is a cancelation list. I got my son in faster by being on "stand by."

Lisa - posted on 11/13/2009

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How about this ladies. Took my grandson to the speech pathologist only to be told they couldn't help him because he was non-verbal!!!!!! Go figure. I thought that was the reason why he came to see them. DUH So now we are back at square one

Stacey - posted on 11/13/2009

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Paulette, I cant imagine how frustrated you are, I was annoyed that we had to wait 1 month, but my suggestion is to make the appointment anyway, once you get in the system you should continue to receive regular appointments, weekly or otherwise, and it will be a big help, but in the meantime look into what you can do at home, although we are seeing the speechy regularly now we are struggling to get him assessed, so I will keep fighting them on that, but while Im waiting I decided to do things myself because it seems to be so true that if your child has Autism you are alone in treating them, we started our son on the gfcf diet about 3 months ago, it is hard and will be even harder if you dont have your husband on board, but we have been seeing some improvement and I feel that atleast we are not just sitting waiting. Also find out if there is a DAN! Dr in your area, this stands for Defeat Autism Now and they use diet and biomedical treatments to treat children with Autism, not everything works for everyone, but many people are having great success with these treatments, just give it some thought and read about it, www.tacanow.org is a good site, I think there is also books around that teach you how to do the floor time appraoch and other similar therapies at home, just some suggestions, but I would definately make the appointment despite the waiting list, you can always cancel it later if you need, but atleast you will have it. Feel free to message me if you want to ask me something or chat.

Amanda - posted on 11/11/2009

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Have you tried to go to your local Regional Center and have them help you to get a Speech Pathalogist. If your child is over 3 you can also go to the school districts closest or around you and they can actually help you with getting a pathalogist also. My son also needs a speech pathologist as well as an eating specialist and we have been waiting for over a year as well. We have had concerns with his throat and eating since he was around 6 months. And when he hit 2 we FINALLY found a peditrician that was concerned how we were and he helped us to go through with everything. We had a specialist come out back in July, we hadn't heard anything, and now that we gone through our local Regional Center we are starting the eating/speech threapy on the 16th of this month.
Just try and keep optimistic. I know the stress and concerns, JUST KEEP FIGHTING!

Jackie - posted on 11/10/2009

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Unfortunalty just about every specialist that you need to see has a waiting lists for our little guys. Hunter was on the waiting list for speech for 2 1/2 yrs. and we are still on the list for Music therapy. O.T. n P.T were not as long. but hang in there.

Sylvia - posted on 10/25/2009

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Try the preschools and other places. My two children attend one, and they see the SP and OT etc all in school, this way they get help on a regular basis and it skips the million appointments.

Best of luck.

Pam - posted on 10/25/2009

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if your son is school aged, the SLP should be listed in his IEP. if that's the case, your school district is required to provide the service. most likely if your son has a diagnosis of PDD-NOS he will require speech therapy to make meaningful progress with his language. keep fighting the fight!

Rachael - posted on 10/25/2009

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Oh you poor thing, you sound so down, please cheer up!! Put the speechie right out of your mind and just concentrate on having as much fun as you can with your family. When I feel crappy I think about how I want the kids to remember me as they grow up, happy and fun or grumpy and sad and feeling like the world has let me down. You will regret not being able to enjoy this time with your kids while they are at this age so just try to forget about it and enjoy them and life. Go to the movies with them, the park, play gyms, making crafts etc. There is heaps you can do just with your kids and no one else they can still have lots of fun. Good luck. Things will work out eventually. xxx

Becka - posted on 10/23/2009

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Have you checked with your local hospital to see if you can go there or Id find a private speech person and work with them, there has to be local agency that would help you find that person. DONT GIVE UP!!!!

Jane - posted on 10/23/2009

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Hi Pauline, you should be able to access funds from the autism package Bill Shorten announced in June 2008 .



$190 million boost for children with autism and their families



All children aged six and under who are diagnosed with Autism and are not yet at school will have access to up to $12,000 over two years in essential early intervention support, through a new $190 million package from the Australian Government.

Jun-25-2008



http://www.billshorten.com.au/press/inde...



Good luck,

Sheila - posted on 10/23/2009

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HOORAY FOR YOU!!! You did need that blip because how else would you have been ready to start again. When I started this journey, I had two been there done that moms who were so helpful. When I told them about the wait, the one said, "welcome to the world of Autism: everything takes three times as long as it should and everyone will tell you to get it done as soon as possible. Hurry up...NOW WAIT!!



So proud of you Paulette! Keep up the fight!

Paulette - posted on 10/22/2009

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Hi all thanks very much for your replies you have all helped enormously to enable me to focus again on what I needed to do. So after my initial shock of what I considered to be an unreasonable waiting time I sent an email to my son's Psychologist to complain and she replied with a very supportive helpful response and gave me a list of names of Speech Pathologist to try and see if I could get in any quicker. I also checked back with the GP and they have told me that I thankfully don't need another appointment to change the referral I just need to give them the new name and appointment time and they will organise the paperwork again. I have gotten off the phone with a Speech Pathologist who can fit us in, in 2 weeks time, thank god. which is great. I obviously didn't need to have my meltdown the other day or maybe I did so at least the service providers all knew I wasn't happy, it wasn't good enough and I wouldn't be just brushed under the carpet so to speak.



Thanks again for listening.

Helen - posted on 10/22/2009

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If you are in the United States go through your school district, even if he is under the age of 5 and see what programs the district can provide.Legally, they are to provide servces from 3-22 under the IDEA laws. Check out www.autism-society.org to see what chapters are in your area to help support you. They would also have resources too.

Beth - posted on 10/22/2009

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If your child is 3 years old or older you should check into your local public school they should have a early intervention for special needs children. My son has been going to public school since he was 3 years for his language delays, because he was already to old for the ECI program. It only took me a month to get him in this program.

Sheila - posted on 10/22/2009

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Hi Paulette,



Get on the waiting list...you need to do this not only for your child but for yourself. The twelve months will pass whether or not you are on the waiting list. This time next year, you will either be seen by the speech path, or you won't....but this way you YOU will know that YOU have done the best you could....shop around, endure the wait lists...it feels personal right now, but it's not. They are not doing this to you, we are just cogs in a great big wheel. You want the best for your child, and it feels like people are putting roadblocks up...but it happens to us all.



My little guy was a HIGH PRIORITY. He was seen first in April, 2005. His HIGH PRIORITY Speech path assessment/OT assessment came in October, 2006. But I made those appointments and kept them because they put you one step closer to helping your child.



I will give you advice I could never follow. Go away for a week (or weekend). Tell your husband you'll be back, but if you don't get a break they'll be visiting you in the hospital.



You sound exhausted and you MUST take care of yourself. Do it when your husband gets a vacation...or do it now and tell him to call in sick. Let him deal with EVERYTHING that you've been dealing with in just the taking care of the family.



For language delays...does your child drool a lot? Get a vibrating toothbrush and massage around his mouth two or three times a day (if it is the mechanics)



Learn some sign to reinforce basic communication (milk, toilet, emotional states...simple signs...) Total communication is wonderful...inundate with communication!



Read books that are pictures with labels (things like My First Dictionary)

Computer: Online games from PBSKids.org (children's programming)

Fisher-Price preschool games





Don't give up!! You are not alone! Find other moms in your area who are going through the same thing...



Take care of yourself...talk to your GP and get your referral. If my neck of the woods, you can get referred to a Social Worker who has a Masters Degree in counselling...



I wish I could make it better for you.



Good luck and take care.

LINDY - posted on 10/21/2009

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hi paulette i know where your coming from i live in australia in a little town called deniliquin and cant get speech therapy for my son even though there is two speechys in town that work in commmunity centre that are free to everyone i cant access them because im in another part of the government called dadahc im in the middle of complaining to people high up i dont know if it will work but we have to fight for our kids i dont know where you live but if your in australia then there are people that run early intervention centres and they might be able to help you out but maybe first you should get yourself help it sounds like you might need to talk to someone i know here they have lifeline that you can call if you dont want to see counsellor or just get on line and talk to someone here i will be praying for you and hope you will be able to get help for you and your child good luck and remember it will get better just hang in there and take one day at a time

Alicia - posted on 10/21/2009

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It is worth it. Both you and your son are worth it. I think you should try to get a referal for yourself because if you are starting to feel this hopeless you really need someone to talk to. If the wait to see someone is that long then find a support group. You may find that just having other parents in your situation to talk to is a suprising help. I know this board is a good resource but it isn't the same as having a person infront of you giving you immediate feedback, hugs, handpats or sometimes a kick in the rear :)



Language delays are often part of PDD. Does your son have any school services available to him? Frequently speech therapy is part of a preschool program geared toward autistic kids. It sounds like you may be in the UK so I'm not sure what they have available in your school system but that is another possible avenue.



I read your post earlier about your husband. I'm sorry I didn't have time to reply just then but I thought about it while reading this post. You have a lot on your plate right now and are doing this on your own or so it seems. Don't be to hard on yourself if there are days when you don't feel like you have it in you. There are days when we all feel like that and many of us have better access to help. I'm impressed with your willingness to fight for your son even when your husband doesn't support your efforts. He will benefit from you being his advocate so don't stop. Just come vent at us when you need some support.



You can do this. Drop me a line if you want to talk more.

Alicia

Teresa - posted on 10/21/2009

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Dont give up. If this is something that you son needs, Not sure where you live but there was a school in coshocton Ohio that my son went to and it helped so much. I would say look other places and dont give up. I will pray for you and your family. God bless you

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