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Advice about son please?!


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Old 07-11-2017, 03:34 AM   #1
Jayne81
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Advice about son please?!

Hello. I'm new here. Really don't know where to start! My son is under the hospital with speech therapist and pediatrician. Speech therapist has done 3 home visits and nursery visit. My son is back at the hospital this week to see pediatrician. For some reason I'm really anxious about this! My son is 3 1/2 and has no speech. It's been a long battle really as I just always knew something wasn't right. Speech therapist has said they are testing jack for possible autisim as he arm flaps has terrible meltdowns very routined and has very little to no eye contact with anyone and also she mentioned my son has a social communication disorder. Thing is while they are doing reports they give me very little information about what they think is wrong. My son is due to start having th PECS in sept, even that I haven't been told what that involves! My son goes to nursery 2 morns a week and that has been a very long battle to get him to settle but he gets enhanced inclusion funding so gets one to one there. Why I'm anxious about seeing the pediatrician this week I really don't know?? I'm just wondering what happens as speech therapist has done her home visit and nursery reports. Will I finally get more info about what they posssibly think is going on with my son??? Really sorry this is so long! Any info will be lovely.

 
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Old 07-11-2017, 10:22 AM   #2
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Re: Advice about son please?!

Does your son have a pediatrician ? Who sent you to the hospital for the initial testing, therapy, etc?

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Old 07-11-2017, 12:12 PM   #3
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Re: Advice about son please?!

Yes, if you are in the US at least, not only should you be given a full explanation of your son's evaluation, you have a right to be fully informed if your child is deemed special needs though a time limit within which that info must be shared may exist... for instance in some cases that may be within 60 days. By all means, ask that it be shared with you and explained. As someone with a special needs nephew I have seen first hand how important being a strong advocate for your child can be. It can mean the difference between your son getting all the services he's entitled to or being lost in the crowd.

If you're in the US learn your child's and family's rights under the Individuals with Disabilities Education Act. Your school district should be able to give you that info if you're unable to access it elsewhere. There are several advocacy groups like Autism Speaks that can also provide you info. Get and stay involved in your son's education plan and don't be afraid to ask questions and speak up to any of the professionals involved in your son's care. Early education is a recognized successful intervention and also your son's right by law in the US but it is often a matter of the squeaky wheel getting the oil.

Big hugs for you and your son. I will keep you in my prayers.

 
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Old 07-12-2017, 12:55 AM   #4
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Re: Advice about son please?!

Firstly thank you both for taking time to reply to my concerns. I took my son to health visitor when he was 2 and said I had a few concerns. It she just told me I have a very naughty son! But because he still wasn't trying to speak she referred him to speech therapist and arranged hearing tests to just make sure hearing was ok,which after 2 hospital hearing tests it's fine. Local speech therapist said she had concerns about my son so she referred us to hospital to see pediatrician and speech therapist there. Speech therapist has done 3 home visits and a nursery visit and all
She said was she's doing a report on my son and like I said testing my son for possible autism. I understand that they can't tell me much as they probably not sure what they think is wrong but if I try and ask for more info they don't really say a lot. When I took my son to first pediatrician appointment they both watched made notes and at the end pediatrician said it's not my fault my son was like that he was born that way! I asked so what do they mean by that and she said let's just do a few things with my son and will tell me more when they can. I think my sons back to see pediatrician as speech therapist has done her report so I'm hoping they will at least explain what they possibly think???? It's hard as my son has one to one at nursery and they all think he's on the autistic spectrum. Well my son is due at hospital today so I guess I'll see what pediatrician says! Thank you both again! X

 
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Old 07-12-2017, 12:08 PM   #5
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Re: Advice about son please?!

In conjunction to Harri, absolutely you have a right to know what testing process he is going through and you have a right to receive (upon request) a copy of all testing results. Get them all! Hearing, speech, blood, cognitive, etc and I would suggest genetic testing done as well. Excuse my forwardness, but since there is issue with him, always good to have a paper trail for reference.

If he has no language speech-wise, I would suggest sign language. Communication is key.

I have a neice who has PDD...pervasive development disorder...took waaay too many years for diagnosis.

Your doctor seems a bit patronising....but if you also need to know exactly what tests he has in mind, request the results of those tests. I'm saying this because many people just want to be comforted and not know the process. If you are OK with that, continue with that level at this point. If you have a need to know, prepare yourself with a list of questions and keep it on point so they will get answered.

Do you have support through family and friends?

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Last edited by quincy; 07-12-2017 at 12:13 PM.

 
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Old 07-12-2017, 12:44 PM   #6
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Re: Advice about son please?!

Hello Quincy. Thank you so much for info and advice. Really means a lot! My son got his diagnosis today. He is ASD. For some reason I cried even though I just knew for some reason?? My son is being intorduced to the PECS in September. Because he's due to start school next September pediatrician was Talking about schools and she has said my son would be better if at a school for his needs and not mainstream but I can put him where ever I want. They said next step is statementing him so he's got a legal document in place for him which is fantastic! Is it weird that even though I knew he was I'm still for some reason upset about it??? I feel so bad! But because he has been diagnosed today doesn't mean his future will be bad. Think I just can't think to far ahead if you know what I mean?? Thank you so much for replying! Xx

 
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Old 07-12-2017, 12:45 PM   #7
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Re: Advice about son please?!

Sorry going on about myself!! How is your niece doing??? X

 
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Old 07-13-2017, 01:04 PM   #8
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Re: Advice about son please?!

Hi....a diagnosis is bittersweet usually. The knowing is better, and for your son....awesome since he is young with communication and learning and functioning plan in place for him before starting school.
Your reaction is normal, but I assume a relief as well.

Now your process of learning starts as well....hopefully the experts and supports will be of ongoing huge value.

I believe strongly that your son will gain growth in a program with workers and knowledge geared toward his best interests of future functioning. The issue with mainstream school would be resources and experience, unless there is a program in place for children with autism. I'm not with experience in that field. I was a sign language interpreter for 5 years in the elementary school system. One interpreter for one student ....but those students weren't without friends or isolated from the classroom learning. Not to say there weren't learning issues, language confusion or behavioural issues....my past students are functioning normally in their lives as adults with work and friends.

My neice was in mainstream school, and her behaviour, aggression and no friends was painful. Her parents were in denial of possible autism....and while they tried their best with advice from the unknowing, the pediatrician was of absolutely NO help saying she will grow out of it. I believe things could have been better if things were in place when she was young and in full learning mode rather than instinctual frustration because her needs weren't being met at school and clearly at home.

By grade 5, the school stepped in and had her assessed....thankfully, but it was a complicated and confusing process because of unlikable psych specialists, worst case scenario thoughts and the like. She was involved in programs to help with etiquette, conversation, dealing with aggression, frustration, etc. They did help a lot. My saying is "one's experience is only as good as those who are involved and who you have it with" ....so being proactive in recognising that and asking questions and if gut instinct says something os wrong, move to another where it feels right.

My neice at 26 is well functioning with good verbal and communication skills. She has grown a lot, but she also has other autoimmune health and pain issues that have allowed her to become very lazy, sleep a lot and basically non-productive. But that's parental no expectations in my perspective. My fear is when her parents aren't able to care for her, new life functionioning will be a problem....or she will embrace it. She really is a joy when talking with her, but her anxiety is very high when she is overwhelmed. That includes crowds, loud noises, singing, certain words, etc. She does eventually calm down and handles it quite well with support of those around her. While I don't see her often, I am learning that I need to ask her more questions of what does bother her, how I can make her more comfortable when talking and so much more because I don't really know her very well.
I don't think she has enough responsibility for various reasons, however, none of which involves me, lol.

Seek supports for both you and your son....including family and friends.

Let us know how the PECS communication is going. Looks like a great program for communication. Hope it works well for him. .....will you have to take a course in it to continue at home?

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Last edited by quincy; 07-13-2017 at 01:08 PM.

 
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Old 07-13-2017, 01:47 PM   #9
Jayne81
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Re: Advice about son please?!

Quincy thank you again for replying! Really does mean a lot! If you don't mind me asking where abouts are you??? Obviously you don't have to say. Sorry if that's being nosey. Yes it is a relief regarding my son and like you said a learning curve for me as my son with ASD is 3 1/2 and I have a 11 and 15 year old so definitely a new way of parenting which I'm ready for! Yes am
I still up set of course! but that's me
As my son knows no different and is very happy. Really nice to read how well your niece is doing! I think us as parents handle things very different don't we?? But she sounds like an amazing young lady with everything that she has to go through and deal with every day! As for you,you sound like a very amazing lady!!!! Signing that must be amazing to do?! If you don't mind me asking have you got your own children with a disability??? As you just come across as an amazing person! Lots of love to you all! And thank you! Xx

 
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Old 07-13-2017, 03:02 PM   #10
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Re: Advice about son please?!

Thank you for your kind words, but they are far too generous. You will be disappointed to know that I have no children by choice. My experience in the special needs has been limited, and with autism it's been through family and coworkers in the field. Interpreting with one student focus and assisting others during my downtime was a great experience. I learned sooooo much and realised what I was able to do. That profession didn't happen till I was in my 40s....so my life perspective was different than if I were much younger. It was highly political, territorial and many times advocating for the needs of my student because of lack of understanding by other professionals. Exhausting yet intrinsically rewarding.

I've learned much regarding personal proactive process through my own health issues and dealing with doctors, my family, friends and realising one never knows until asking, doing research and having a good and helpful support system that actually gives a darn without being patronising and passively aggressive. Oh...and therapy, my psychologist was my lifesaver...truly!

My location is in my profile.

It sounds as though your son's age is perfect for his new direction in development and already well prepared by you and family.

It would be questionable if you weren't upset....sound, emotional and logical response to me.

I think with every issue, it's a process for it to make sense and move from there. Isolation is the worst....encouraging and talking and expressing need is certainly a way to gain trust, and to gather what we need.

I apoligise if I gave the wrong impression regarding my advice and my personal situation.

Your son has a very gracious mother!

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Last edited by quincy; 07-13-2017 at 03:05 PM.

 
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