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My heart is broken.... How can people so cruel :(

just checking back to see if you heard anything but then i'm an impatient sort!....and its only been one day. sigh.
 
Wow. Where to begin?

As a preface to my reply, I am a Pediatric Nurse Practitioner in primary care and the mom of a little man with profound speech delay due to other (physical) medical issues.

1. I know there are therapies and children for which/whom separation from parent increases productivity. I also know that keeping a parent out of the room can enable an inferior therapist to not work as hard as they should. Speech (in particular) can make lots of progress when a parent isn't present; because a child may be forced to communicate more clearly rather than playing on the natural Mom instinct which anticipates wants/needs. This being said, our speech therapist works with our son while either DH or I are present to help keep our son on task. I sit in a corner and intervene at that moment where I see my son is playing the therapist. I intervene to redirect him back to the task at hand and then remove myself to the corner. I feel like you were simply eliminated from the equation to make the therapists lives easier.

The scenario you recounted in which your son was A) forced on the swing while he was distressed with the situation and/or B) left on the swing whilst the therapists chit-chatted turns my stomach. I wholly understand that children with social and sensory needs must learn to deal with personally challenging situations to function in mainstream society. However, it's not like you can take an approach similar to "cry it out" sleep training of a typical child. I get that a swing can act as both a physical/emotional challenge to an autistic child and a fun activity that they may recognize as a reward for braving the adjustment. Yet, crying on a swing for extended periods WON'T make a child with autism desensitized to the challenge. It makes a child with autism spiral into an awful day/night about which they can't snuggle up to a parent and complain.

2. I am a HUGE supporter of exploring any/all diagnoses. My feeling is this: if a diagnosis could open the door to more services, embrace it! With the constant flux of illnesses and disabilities for which there aren't quantitative blood tests, you never know when you may lose services. I hope, however, that I address this idea to my families with more tact that your specialist! I'm sorry her wording was so insulting and dismissive.

Always explore, always fight. You know your child. I trust the "Mommy gut" of my families above everything else. I wish all pediatric providers did.

I've personally been stonewalled by specialists who thought I was over reacting, despite my education and expertise. Guess who was right every time? The head of GI of a local childrens' hospital even called my boss/my son's pediatrician to apologize for not listening to me, because he "didn't know I was (my boss') APRN." My boss responded: "It shouldn't matter that she's an APRN. You should have listened to her as a Mom. She knows her son, and she was right. I've already referred the family elsewhere and he's been admitted."

3. Does PA have a parent advocacy counsel? In my state there is a parent advocacy counsel which can help with everything from insurance paperwork to navigating the "services" system and connecting with superior therapists and family support groups. If you aren't sure, (I did a quick google search and didn't find anything definitive) I would call the Autism Center / Behavioral Pediatrics Department at CHOP for guidance. It isn't unreasonable to ask a nurse of that department if they can direct you to a list of the most reputable Autism practitioners and support groups.

CHOP is one of the foremost pediatric facilities in the world. Even my friend (who is a pediatrician up here in New England) chose to travel to CHOP so the best surgeons could handle her son's congenital malformation. Even if it is a drive, I think it's worth getting on the waiting list for a comprehensive developmental evaluation there, which may open the door to more services and guidance.

4. I'm sorry you feel like the time you spent adhering to recommended therapy was for naught. I respect your recognition of your son's needs and your eagerness to get him into the best center possible. I sympathize with the frustration and exhaustion I am assuming you feel with the ordeal your family has endured. I just wish you were my patient in my state so I could go to bat for you! I truly hope the pieces fall into place and "Demo" gets hooked up with amazing therapists and thrives!

Hugs.
 
Hi Movie Zombie,

I'm sorry, I have fibromyalgia and have been running around all week taking demo to bowling, tumbletown, gymnastics and the punpkin patch. Demo's BSC and TSS like activities outside of the home but they dont understand my illness. This bad weather (constantly raining and cold) has taken a toll on me and making it difficult for me to get around. My other issue is that I forgot my password for pricescope on tapatalk and now I can't get on the forum anymore from my iPad and I don't have a computer. So I have to borrow my son's laptop to post.

They called me but I was driving and I couldn't take the call. So I called back and the person wasn't in their office. I will call again on Monday. I do have some good news. They called about OT and now i have all of demos therapy at the place I talked about. I can't believe it :appl: I was there all day Wednesday with evaluations and he did great! I am so glad we are finally catching a break. It seemed like for awhile there, all we ever heard was no or we will put him on our waiting list. Its so great because he absolutely loves this place. When we pull into the parking lot, he is rushing me to get him out. I can't tell you how wonderful it is to not have to listen to him scream because we have to wait in the waiting area for 15 minutes while the therapist plays on the computer. I will let you know on Monday, if I have any success with Kennedy Kreiger. I just really want to thank you all for you kindness, it has really helped me so much :)
 
Munchkin, thank you so much for your suggestions. It is tough navigating through all the information they give you. The BSC is suppose to be my assistant when it comes to helping with whatever is out there for Demo. She is suppose to help with contacting them and filling out paperwork as well as be there with me during these meeting, to help me understand the jargon and advise me as needed. I was given a book when he was diagnosed with all these different services but I got a little frustrated because they didn't have the separated by age or coverage area. I called at least 30 places and no one had any availability. So I decided to ask his new pediatrician and she really had a wealth of information for me. I was put in in contact with a behavioral specialist associated with the hospital. He evaluated demo and had suggestions for his treatment plan, which included the advocacy program. The advocacy programs psychiatrist evaluated Demo and diagnosed him with autism and prescribed hours for different services he felt Demo needed. The advocacy program assigned Demo a BSC. She knew Demo from the LIU and and wanted him on her case load. She had two TSSs assigned to him in a weeks time. One comes to my house for 2 1/2 hours a day to work with Demo.

I have seen such a huge change in Demo. He is calling me mama more often and I never get tired of hearing that :D He is only saying four or five words but he is trying so hard. He is beginning to have some imaginative play as well as playing with toys the way he is suppose to. He is signing more for things he needs or wants and I even got him to eat a piece of ham which is HUGE. I truly feel like I have to keep Demo's best interest in mind and keep pressing on to get him all the help he needs because that is my job. Unfortunately, people don't always do what they are paid to do, so I have to stay on top it.

Munchkin, it would definitely be great if I could have someone like you to work with. You really understand first hand some of the things we go though as parents of children with delays. I'm very grateful for your knowledge and your suggestions. I feel like I'm trying to do everything I can and thank you everybody for seeing that. All your comment made me feel so much better. My DH couldn't understand why I was so upset about what she said because he feels that no one can predict the future. But that's my little guy and I felt like she was saying he had no future and no chance at a life. I do understand what she was saying about the MR diagnosis but I have a few years before I have to worry about that since he is only four years old, according to his BSC.
 
I'm glad things are starting to get back on track. Do you have an Area Education Agency? I started working as a para this year at a preschool here in town, and I'm in the special education room. We have 7 kids in there, tho none of them have been diagnosed with autism, a few of them at age 3-4 can only say a few words, and one mostly makes sounds. AEA has a speech therapist come twice a week and they have a therapist that comes to work on large motor skills once a week and fine motor skills once a week. Parents could be there if they wanted, there's no problems with that. The lead teacher gets together once a year w/the parents, the principal and the AEA specialists and they go over the child's IEP (Individualized Education Program) to talk about how the child is doing and to set goals for the coming year. I don't know if that's maybe something to look into?

I'd definitely do as suggested earlier and take Demo (who is cute as a bugs ear by the way!!) in to be re tested. I think a lot depends on who is testing and where you go. My cousin has a little boy who is..11, no..12 I think. She had him tested when he was like 2 and 4, and they said he was fine, so they didn't qualify for any special help or services or anything. He *still* doesn't talk, just points and makes noises, and not being able to communicate fully, there is a lot of behavioral problems. Not that I'm saying Demo will too, I just mean that there is *something* going on w/my cousin's son, but nobody diagnosed it, and now she's just so defeated after trying to get him help, she just ignores it and goes on. It could be the opposite w/Demo, and he's diagnosed with something he doesn't actually have, you know? Sometimes kids just talk late-and to be able to do those things w/the ipad and dvr etc, he's got the brain power in there.
 
Hi CharmedOne,

First let me say your little boy is absolutely gorgeous, and I'm so sorry you have had such a tough time getting him the help he deserves. My nephew from birth was quiet and anti-social. He didn't eat many things, just one or two. He didn't talk and didn't want to be around people. My sister had him to the doctors all through his growing, but it wasn't until he was 13 that he was actually diagnosed with autism. He was always in a regular classroom and over time he made friends. At 15 he has a whole host of friends. And he's doing well. I'm sharing this just to say, the day will come when your beautiful boy will say more than a few words and eat something more than he does now, and make and keep good friends.

I started this response to suggest that you constantly video your little one when he is talking or using the ipad. Video, today's photo-album, will be great keepsakes and evidence to show those who doubt his capabilities. Just a thought :)

All the best,
Elizabeth
 
thank you so very much for the update!
i think you are doing terrific, especially given your own health issues.
please please please make sure to take care of yourself through all this.
and i am so very happy that things seem to be on the upswing for Demo! :appl:
i can "hear" your joy in your writing.
 
Hi packrat, we do have a system like that here. It's called LIU. He sees a speech therapist, an OT and a PT once a week. I am having a house visit in couple weeks to see about getting him an iPad of his own, to use as a speech device. His teacher, BSC and speech therapist will be here, so hopefully I can get some straight answers on what they plan on teaching him. He has an IEP too, so I'm sure we will go over that too. I am sorry about your cousin. I know families in Maryland going through the same issue. It's unfortunate because ignoring them and denying them services is possibly setting these kids up for failure. I hope your cousin gets the services he needs soon.

Hi ElizabethR, I love to hear success stories. It's wonderful to hear that he is doing so well. I know it was a tough road for him but wow, his success is amazing. I want to thank you for the videotaping idea. I have done some but I really need to document his progress more often. It has helped me so much when it comes to his teachers and therapis. Because no matter I tell them, they don't believe me. So I was able to show them the things he could do, through watching his videos. But I really do need a better camera :)

Hi Movie Zombie, you are so right. I am feeling so much better now that I finally got him registered there for all his services. Seeing him happy there, makes it all worth it :) Thank you so much for your concern for my health. It's hard sometimes, because I feel like no one cares. I don't talk about how I'm feeling because I don't want people to judge me. But, I am glad it's the weekend, so DH can help me out with Demo. I am going to try and get as much rest as I can. Hopefully demo lets me :) Sunday is family day, I made it a rule when we got married. No working, nobody over, just spending time together as a family. You can go to church, but that's it. It's great because we all just sit around and talk , watch movies etc. So rest and relaxation is on the schedule for me today.

Packrat, ElizabethR and Movie Zombie, Thank you for your great ideas and kind words. I hope everybody is having a great weekend :D
 
Hi Charmed One! I am actually a special education teacher in NY. I teach children diagnosed with Autism and other similar diagnosis. I also work in the home with families as a behavior consultant. Your best advocate will be yourself. Research, research, research! As for a communication device, if you already have an iPad the best communication software is an app you can download called proloquo2go. It's expensive, around $200 but it's also unlimited and far less expensive than even most basic communication devices which are often very limited.

As for speaking, does your son attempt any vocalizations? Does he have his own words for things? If you decide to use a communication device one of the ways the kids pick up language is by using the device and then attempting to repeat the phrases or words. You will be amazed at what your little guy is capable of :)

It's going to be a long journey but the higher you set the bar and push your son and for your son, the higher he will reach!
 
Hi Asscherhalo_Lover, Thank you so much for your comments. I have looked into that app and possibly getting some funding, to help cover it. It is quite expensive and with all the copays, everything is all adding up. I use an iPod with him when we are out. I videotaped everything he uses and verbalized in the videos what they are. I also video taped me saying them as well. The up close videos of my mouth saying them has gotten him to say a couple words. As far as the iPad, he uses a sign language app and I have several apps for different things, like foods, beverages, things outside, things he plays with etc. So he uses that to show me what he needs. The apps have pictures, the words and the words being spoken. He really hasn't attempted to say many of the words that way though.

I recently downloaded a new app that sounds out ever letter as well as saying what ever is written with each letter he adds to the screen. When done it says the words or sentence as a whole. He really loves this app and uses it a lot to type in words he sees any and everywhere so the app will say the word. He doesn't have his own iPad and I am working on getting him one. But for now he uses an iPad one and unfortunately, a lot of apps don't work we'll on the older model. Hopefully, I can get him one soon that will strictly be for him and his app.
 
Hi Charmedone!

I just want to say stay strong!! Your son is adorable!!

As a side note, my mother is blind (born in the 50's in the middle of nowhere with a hospital that wasn't prepared for premies) and used to work for the National Federation of the Blind (NFB). Now I know your son doesn't have a physical handicapped, however lots of parents used to contact the NFB for the children programs as well as reviews on different therepists etc. There is a wealth of infomation there and they can point you in the right direction if you have any questions. So definitely contact them if you need any assistance with services etc.
 
Hi Sarahbear, Thank you so much. I will definitely check them out and thanks for you kind words about my Demo. He is such a hugabug :D

I wanted to update you all on Demo. He is doing so well at the new place. They are working on his sensory integration disorder to help him find better ways to get the input he needs. PT and OT are going well. They have attainable goals and all the means to help him a achieve them. They also give us things to work on at home. So I feel it is a group effort. He has adapted to the new place well and loves going there. Speech is a bit of an issue, she thinks that she can make Demo (in time) do what she wants, but I tried to tell her that he will not cooperate. I tried to warn her that he decides that he doesn't like her, he will scream the whole time. He likes letters and numbers and the have a big tub of them there. I warned her as I did the others. If he sees them, then thats all he will want to do. Instead of getting rid if them totally, she put them outside the door. He screamed the entire time trying to get to them. After an hour of that, I wanted to knock her out myself. Hopefully she decides to change her strategy next week. She wants me back there for his sessions, so all I can do is wait and see. With PT and OT, I act like I'm going back there with him but as soon as he gets to the play area, I leave. He does wonderful except for the change because the OT put his shoes back on for the PT. So he thinks its time to go and cries. But I'm sure in a few weeks he will get used to it. I see a change in him already :)
 
continued progess is a good thing. and it sounds like it really is a group effort with you not only ferrying little Demo to appointments but participating in sessions but with lessons to be completed/practiced at home as well.

so, my dear Charmed, are you getting the rest you need and taking some time for yourself? i hope so! in order to be his advocate you need to be your advocate first....imo.

i want you to know how much i admire you and your commitment to making sure your son has the optimum chance at learning. :appl:
 
Hi Movie Zombie, Thank you so much for recognizing my efforts. I really do appreciate it. Some times I feel that as a SAHM with an extra special little guy, people who were my friends prior to having him, don't understand that at all. I have lost just about all of them. At first I tried to juggle it all but it was too much and I became overwhelmed. So I focused on what was more important. But I must say I have to find something to do outside of home, just for me. It's hard because when I'm not there with him, I am constantly worried. But I know I have to let my In-laws try to take care of him. So next month is our 18th anniversary and we are going out of town for dinner and some entertainment. Not sure what DH has planned but I do owe it to him and myself. This will definitely be hard for me, but I know I have to go.

Health wise, things aren't looking so good lately. Insomnia is killing my short term memory and running around has left me pretty sore. So I have decided that I'm going to lie down early and letting my DH take care of Demo for an hour or so without me, is best. I don't do it every night but I am shooting for at least three nights out of the week. Just that little bit of time to myself has helped me so much. Now I'm thinking of going bigger, like a nice spa hotel getaway one Saturday night, once every three months or so. That would definitely give me something to look forward to ;)

I just want to thank you MZ for being so kind. It has helped me so much by being able to vent about my struggle and have positive feedback. So I truly want to thank you and everybody else for listening and taking the time post your positive and thoughtful comments.
 
you have a full time job and don't let anyone try to tell you that you are a SAHM!!!!!!
i am glad you are taking steps [albeit small steps] to take care of yourself.
and letting your in-laws become more involved could be a very good thing for Demo.
perhaps your husband can bump from 3 times a week to 4 to give you more relief?
are there any programs around to allow you to receive assistance in the home with chores?
is it possible to go for a 15-30 minute walk each day?
are their support groups for parents? perhaps you could meet new friends in such a group.
how about a facial every 3 weeks or so?
just tossing out ideas based on what you've said.
also, have you spoken to your own dr re the insomnia and short term memory issue?
your self-awareness re what you need and how you're feeling is a very good thing!
 
Movie Zombie, That is so true, it is a full time job. I love it so much :) My DH doesn't mind taking the little guy, even though sometimes he doesn't always know what he wants. He tries so hard to take care of him to give me a break but he works full time and part time, so I know he is tired too. We will find something that works, I'm sure. I live in a little town and everything here about autism is so hush hush, so it's hard to meet other moms. There are so many rules here. its crazy. With all the privacy rules it's hard to do and there are no groups like that here. Now that we are at this new facility, I'm hoping to meet other parents there. I'm not sure exactly what I want to do on my time away but I would like to try acupuncture ;) I have seen quite a few drs and tried just about everything out there. They either didn't work or I had an adverse reaction. So I just take something for pain and a muscle relaxer for my neck. Sleeping aids haven't worked at all. So going up an hour or so early has helped me to get a bit more rest.

Demo hasn't been eating much the last couple days, so I'm watching him. He has been lying around all day. I hope he is not getting sick. Only time will tell. Thank goodness it's the weekend.

MZ, I'm not sure where you are, but hopefully you are out of the storms path. We are gonna stock up on supplies tonight, just incase. Thank you for your suggestions, It would be great to find someone with a child Demo's age, so they can play together. I'm still looking for now.

Stay safe everyone and I hope nobody gets bogged down with the snow and rain they are predicting.
 
me = west coast california gal! definitely out of the superstorm path.....but watching the news about it and hoping it isn't as bad as predicted. yes, stay safe out there!

re acupuncture: I LOVE IT! if nothing else it is deeply relaxing. i hope you find someone that is really really good. he's originally from taiwan and the family has been trained acupuncturists for at least 3 generations. and he's already teaching his son a bit or two...... remember, not all acupuncturists are created equal so if you can, shop around.

also, i'm a big believer in chinese medicine.....something to explore in free time?
 
I haven't tried Chinese medicine yet. I am interested in it though. I have tried holistic medicine. Not sure if they are similar. The holistic doctor tried several different things and I few of them helped, but as a whole the treatment wasn't as successful as I would have liked. It was pretty expensive too. My MIL had acupuncture there but for some reason she never suggested it for me. I will have to ask around to see if there is an acupuncturist is in the area.
 
how is Demo doing with all the storm weather and happenings? hope you are all safe.
 
Hi MZ,

Demo and the family are doing well. School is closed again today, so he got to sleep in. My DH is a policeman, so he got called in for emergency services all this week. We never lost power for any significant amount of time. We are so lucky because we are in a new community with our power lines underground.

I think I remember you saying you are on the west coast. It's great that you were not affected. It was a horrible monster storm. Now we just have to deal with the flooding.
 
glad to hear you and yours are safe. tell your hubby to stay safe....i know you do but tell him for me, please.
 
Will do MZ. Thanks you so much for your kindness :)
 
Hi, Charmed One! I am also a special ed teacher, but my specialty was hearing impaired and dyslexia. I now tutor children with reading disorders in my home.

My own son had no speech delays, but he had various problems as he grew up. He was diagnosed with a whole bunch of things over the years, but finally this summer he was diagnosed with Asperger's. I just wanted to tell you that I can relate to there being no high quality services nearby. It is very frustrating having a diagnosis yet there is no one remotely nearby that has true expertise in adult autism spectrum disorder. At least now there are services for children, but I agree that quality varies greatly depending on where you live.

I just wanted to tell you that you are a terrific mom and it sounds like you are doing everything you possibly can! Hugs to you!
 
Aww DS, Thank you so much. I'm sorry you are having a hard time finding services. I'm not sure if it went through but I know at one time they were trying to classify aspergers syndrome as a social anxiety disorder. So more services would now be available by certified licensed therapist. I wish I knew more about it to share more information with you.

It's so difficult when you don't know where to go. Did the doctor that diagnosed your son offer you any guidance on who to contact for services. When I changed pediatricians for Demo, one of them gave us a wealth of knowledge and if it wasn't for her I'm not sure where I would be. I do ask around a lot. Which is not something welcomed here. Everything is so hush hush.

My neighbor didn't tell her son that he was autistic until last summer (now 17 diagnosed @ 3) and now he wants nothing to do with it. He stopped seeing all his therapist and went into a deep depression. It's almost like people are ashamed of it here. But I don't let that deter me.

I had a huge meeting at my house yesterday with Demo's BSC, TSS, psychologist, teacher, speech teacher and her supervisor. I wanted us all to be on the same page. I also wanted to see about getting him a speech device. But I think I'm just going to buy him an iPad myself. He uses an iPad 1 but a lot of the new apps don't work on the iPad 1. So I am hoping I can at least get some help with the more expensive ones. The pecs app is $349 and I can't afford that right now. But I must say the iPad has been the best thing for us. He uses it 95% of the time to communicate, with sign language or words with pictures.

I'm not sure exactly how they differ aspegers and ASD. I was always told that if your child was verbal than it was aspegers. I'm not sure if that is still true, but again I do hope you are able to find services. Thanks again for your kinds words.
 
Diamondseeker, one of the therapist recommended Easter seals. She said they should be able to point you in the right direction. I hope they can help.
 
Thank you, CharmedOne! I think our disadvantage is living in a smaller town. The psychologist did give me a referral, but the place acted like they mainly worked with developmentally delayed and not specifically autism spectrum disorders. There is talk that the DSM-5 will discontinue Aspergers as a separate diagnosis and there will just be Autism Spectrum Disorder (or whatever they are going to call it).

I think using the iPad for communication is a great idea! I do hope you can get some assistance in getting the apps you need, though!
 
In a way, that would be great if they did. So more services would be available. I'm not sure what state you are in and being in a small does makes it so much harder. Do you have a hospital near by? the hospital is where I initially began PT and OT for him. I wish I had more suggestions. Where I live now, was and in some ways still considered a small town. I think I got lucky with a teacher living across the street from me. If it wasn't for her getting her daughter evaluated because she was a micro preemie, I would have had no idea of the symptoms. A lot of times we have to go several counties over for services, which is tough because I've had quite a few car accidents (most not my fault) and driving places I'm not familiar with, gives me anxiety. It all does get overwhelming some times.

I would like to share some good news about Demo. He is making great strides. It's like a switch clicked or something. Demo has SID (sensory integration disorder) so his hands are very sensitive. He would never clap his hands. He would bangs the floor (which can give you a heart attack at 3am) then he started smacking his tummy and later his head. It has been a long standing argument with his BSC, because she considered it self injurious. No matter how many times I told her otherwise. Well, he has all of a sudden started clapping his hands and loudly. It really shocked us all. He also has started to sing with the music and making different sounds out loud. I hear him in the middle of the night usually around 3am, listening to his iPod. The singing just started a couple of days ago, but I find myself sneaking over to his door to listen :) He never wakes us up to get him. He just plays by himself for a couple hours every night and then falls back to sleep. I usually watch him the whole time on camera. I have noticed his favorite music is Bon Jovi, Hinder and Creed. So he always had his iPod on blast listening to them (no headphones) but no longer humming which is huge.

I just wanted to share that progress. He is such a special little guy and I'm so happy to be his mom :D
 
My son really needs some social skills training to help with his social anxiety but there are no autism specialists in this area. And he won't like having to go to another city frequently to do it. That is the main problem.

That is precious about Demo clapping and singing to his iPod!!! I can understand how delighted you must be!!! :appl:
 
I'm so sorry diamondseeker, it's tough being a mom sometimes, especially when all you want to do is help them. My neighbor is going through the same thing. You are doing all you can do. Hopefully, he will realize the benefits and change his mind. I can relate about having anxiety about driving a long distance, if that is part of what bothers him. All I keep thinking is, I gotta get out of this car and get some air.

I just wanted to say thank you, I am over the moon with is progress :)
 
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