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So, anyone here have experience with non-verbal children? 

 

And I don't mean, like, non-Verbal, the man child, either. 

 

The missus and I are trying to prepare ourselves for this possibility. Big man hasn't spoken yet. We've increased his speech therapies and his special education appointments these past few months and not much change. The push is to have him pre-school ready by January as that is when the Early Intervention Services we've been taking advantage of ends. We are talking with his care coordinator now about a possible extension of services but Wyatt's specific b-day date makes that difficult I guess. He's days over a timeline in the year that may have him denied an extension of services? I don't think I have quite a grasp on the specifics just yet.

 

Aaaaaaaaanywhoot....

Non-verbal children. What's your experiences? What have you tried? What's worked/hasn't worked/are you hopeful of seeing work that you're in the progress of? Do you baby sign? do you ASL sign? What resources have you taken advantage of or heard good things about? Any advice at all? How do you. . . . . keep from feeling guilty. . . . from feelin. . . . .  all these terrible feels that's just hard for me to express about the whole thing? How do you deal with it all? I just want to hear my boy's voice, ya know?

 

I tell ya, sometimes the inspirational stories you can read from various support groups can really just have an adverse affect to, ya know? I read a story a mom posted in The Down's Syndrome Parents Group of WNY Facebook page a while back from a mom, I think it was called something like, 'Things I would Like to Say to people about my non-Verbal Child'. You know the like. Anyway, it was her talking about working for the better part of a decade with her child just to get her to say 'mama' and 'I love you'. The missus read the same thing coincidentally simultaneously, lol, and I found myself comforting her with words I've heard that DO HELP, yes, such as, 'just because he can't say it yet doesn't mean we can't see it.', but I didn't find them as reassuring as I hoped they sounded to her. There's a level of? . . . despair? . . . no, not despair. . . Helplessness maybe? Both? IDK. You CAN see it though. You can just SEE the love in this kid's eyes when he first sees us in the morning and we get this big cheese ball smile, lol, or the Best-Worst thing in the world of when he cries because we have to leave for work or just to quickly take out the rubbish bin! lol. 

 

So, we have a new branch to our road of life that we hadn't quite expected and unfortunately I forgot to buy that specific road map when we were planning this trip so many years ago and I'm just asking for directions, I guess. 

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*gives Mils a tight hug* We're here for you guys.

 

I know for myself, most of my experiences have been with peers, kids I've babysat as well as regular customers at places I've worked. I know one of the kids I've babysat loved to watch a kids tv show that taught sign language. I'm not sure if it was ASL but from the little I know, I did recognize some. I did see on Facebook, I think through Upworthy, a father who's daughter is non-verbal and he developed an app for her. It has photos of her mom and dad she can pick, and pictures of either what she wants or if she wants to say how she's feeling.

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What Lessa said. I worked with a non - verbal child that was in 3rd grade. We used some ASL and some technology. He had a sound board that could be programmed with pictures. When you clicked on a picture it said what it was. He used that mostly to communicate.

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The most important thing is to help him communicate his needs and wants. Talk with the speech therapist and get some basic signs. He may have trouble with fine motor skills and while you do that, you can also use a picture exchange communication system (PECS). He's little so you don't need to use full sentences, just icons of things he wants and needs.

 

Some look like this:

 

il_570xN.1081913232_t922.jpg

 

 

There are also apps for iPads and tablets. You could ask for a referral to the assistive technology department at his school. There are even devices that can "speak" words and are programmable.

 

It has been my own experience, both with my son and with work, that you will have to fight to get speech and language services. Often, they will try to only provide "consultation" or "group" only. I didn't put up with that BS. 

 

http://www.woodbinehouse.com/What_Did_You_Say_insert.pdf

Edited by Ryrin

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*gives Mils a tight hug* We're here for you guys.

 

I know for myself, most of my experiences have been with peers, kids I've babysat as well as regular customers at places I've worked. I know one of the kids I've babysat loved to watch a kids tv show that taught sign language. I'm not sure if it was ASL but from the little I know, I did recognize some. I did see on Facebook, I think through Upworthy, a father who's daughter is non-verbal and he developed an app for her. It has photos of her mom and dad she can pick, and pictures of either what she wants or if she wants to say how she's feeling.

I think I remember seeing that same thing. I will have to try and find it. Especially being that, unfortunately, my son is obsessed with our cell phones. Wonder where he got that example from? lol I made it a rule, if I am on my phone and I catch Wyatt watchin me, I put it down and play with him. I cannot stand how distracted I am with the bloody thing. 

 

What Lessa said. I worked with a non - verbal child that was in 3rd grade. We used some ASL and some technology. He had a sound board that could be programmed with pictures. When you clicked on a picture it said what it was. He used that mostly to communicate.

We just had a sit down with our Care Coordinator Mindy late last week. She said if we had any questions, ideas or resources we think we'd like to try to ask her and she will do her best to find it. I guess, through Early Intervention Services, we may be able to get an iPad on the gratis. Supposin I may be able to put yours and Lessa's ideas together, maybe? I'm hopin it'll work out like that. Another lil girl we know who is months in age with Wyatt and also has DS excelled once her parents acquired an iPad for her. 

 

The most important thing is to help him communicate his needs and wants. Talk with the speech therapist and get some basic signs. He may have trouble with fine motor skills and while you do that, you can also use a picture exchange communication system (PECS). He's little so you don't need to use full sentences, just icons of things he wants and needs.

 

Some look like this:

 

il_570xN.1081913232_t922.jpg

 

 

There are also apps for iPads and tablets. You could ask for a referral to the assistive technology department at his school. There are even devices that can "speak" words and are programmable.

 

It has been my own experience, both with my son and with work, that you will have to fight to get speech and language services. Often, they will try to only provide "consultation" or "group" only. I didn't put up with that BS. 

 

http://www.woodbinehouse.com/What_Did_You_Say_insert.pdf

Wyatt is starting to do well with selecting known pictures of things so I may try to include more flash cards with day-to-day activities. Won't hurt, right? lol I feel like Rick Moranis in 'Parenthood'. lol I turn just about every activity to a learning session.

 

Thanks all and sorry for the late reply. I guess I'm gettin a bit nervous now as the week goes by. And not just for the speech bit either. Turns out, since Wyatt's b-day is AFTER December 31, we CAN do the extension thing. I had my info backwards. starting in January, providing he's met his mile stones of walking and communicating in some fashion, he will do like a part time pre-school and home based Early Intervention (EI). It'll be a better transitional type situation. lol Baby steps! hahaha We need to have Wyatt evaluated for the Board of Education and we will need to pick who and where the evaluation is performed. Then, in September, we start touring schools. Both us and EI think Wyatt would do best in a full inclusion environment where Wyatt'll work both with special needs children and standard children. I digress.

 

I'm getting nervous because this Friday we have our appointment with Wyatt's cardiologist to talk specifics about his upcoming surgery. It's just getting more real. It was easier to handle when it was an issue to be dealt with later on. Later on is becoming shorter and shorter and it's starting to get to me. Wyatt'll get through fine, I know. it's just how we do it in this family. Nothin stops us. ;) Doesn't mean I am immune to nervousness though. lol 

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Friday was rough and we were given a LOT of information with which to make our determination, which we had, but his Dr. prompted us to wait until she gets back in the country. She is doing conferences for a week. We have two options for his ASD (atrial septal defect) repair. We can go to Strong Memorial Hospital in Rochester, NY (roughly two hours away) or Columbia Hospital (6-7 hours away) in New York City. As his cardio put it, if Wyatt were a standard child, his condition and procedure are simple enough (as heart surgeries go) that Rochester would be fine. That Wyatt has Down's Syndrome though has her leaning towards Columbia. I guess DS children have a higher likelihood for complications. I guess they can have a difficult coming off intubation and are more susceptible to infection and Columbia is better equipped to handle those complications. Columbia has a better staff of on hand Dr.s. Strong's Dr has more experience but they are the ONLY surgeon on staff. Columbia is rated #1 per death and Strong is #2 per death. It'll be a MINIMUM of a 5 day stay at whichever hospital. Transportation is covered. We will be given a train ticket for an over night trip. When we get to NYC we hit the ground runnin. Sleep on the ride. Surgery int he morning. Housing is also a difficulty too. Rochester's Ronald McDonald House will accomodate the missus and I and POSSIBLY my step son, who really wants to be there and we want him there, but it's based on availability. It's 2 people per room so they would need to find an additional room for him, so that's iffy. Columbia's RMH is under construction and big brother won't be able to come as we'll be sleeping in the room with Wyatt on chairs that convert to sleepers. That's all just logistical stuff though. The hard part was hearing the surgery. Wyatt is going to have one long incision down the center of his chest and the surgeon has to split his sternum. The portion of the heart they are working on is the upper two chamber and not the muscular part that controls the pumping. Awesome. No risk of scar tissue on the muscle later on. They repair the opening, use metal bands that will remain there to close the sternum and close up the incision. The part that has me worries is the after though. The procedure causes a lot of inflammation around his heart. To help address that Wyatt will have 2 - 3 drainage tubes exiting his body. One on each side of his chest and possibly a third in the front. I hope they are covered very well or they are goin to have to restrain my boy and THAT is goin to be terrible hard. He looses his mind if you try hand over hand play! let alone restrain him in bed. It's quite a show tryin to hold him still for hair cut lol. The cardiologist is reaching out to a pair of families who have recently undergone procedures, each at one of the hospitals, to see if they would be willing to contact us about their experiences. We are still solidly convinced on Columbia though. We'll do our due diligence but we're pretty solid on our choice. So. That was Friday. I've been nauseous and kinda numb since. This is goin to be the hardest thing I've ever faced I think. Ever. 

Edited by Millon

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Mills you are one of the strongest people I know. All your hopes and fears before Wyatt was born and you kept strong and believed and you have a totally beautiful and wonderful boy. Seriously just seeing Wyatt on my FB page makes me smile. I believe in your family and I'm glad you're getting all the info and advice to make the best choices. Your country may be crazy for health care costs but you have exceptional doctors and surgeons.

 

As for the non verbal communication, you don't have to go to the expense of an iPad. We've got android tablets and an amazon fire and they're all plenty fast enough for small boys. Plus it's not the end of the world if it gets broken. I've had a poke about and there are android apps out there specially made for non verbal peoples.

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Just eat what's on the plate for this meal right now. It looks like that's making the decision as to which hospital, and it looks like you've done that, so the next bite might be something like logistics for the trip to NYC. Surely a city of that size will have resources to help you find a place to stay beyond RMH, be it churches or whatever. Is there someone who can help you track that sort of thing down? Anyone who keeps offering to help, that you might delegate that task to, so that while you work out other things, they can arrange shelter for your family during the hospital stay? Adding the anxiety of drainage tubes to everything you are already chewing on will just make you choke. Eat the drainage tubes when they are the meal. One thing at a time, lest you completely overwhelm yourselves. That's my advice, anyway. 

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Mills you are one of the strongest people I know. All your hopes and fears before Wyatt was born and you kept strong and believed and you have a totally beautiful and wonderful boy. Seriously just seeing Wyatt on my FB page makes me smile. I believe in your family and I'm glad you're getting all the info and advice to make the best choices. Your country may be crazy for health care costs but you have exceptional doctors and surgeons.

 

As for the non verbal communication, you don't have to go to the expense of an iPad. We've got android tablets and an amazon fire and they're all plenty fast enough for small boys. Plus it's not the end of the world if it gets broken. I've had a poke about and there are android apps out there specially made for non verbal peoples.

 

I have a Kindle Fire that I never use. If he breaks the other tablets, I'd be happy to send you the Kindle Fire. It's 5 years old, but it would surely run a see-and-say type app or something, whatever Android has for non-verbal communication. I can't imagine that it would be that taxing of an app, that an older tablet couldn't handle it.

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Mills, they will keep him sedated. Call the hospital social worker. Often there are other resources available for housing/funding. We were offered a very low rate at a nearby hotel in San Francisco until a room at Ronald McDonalds became available.

 

My older son had a chest tube because he blew a hole in his lung. I know what that looks like. I saw infants who had cardiac surgery. Mentally prepare yourself. Know that Wyatt will be given pain relief and he won't remember a thing.

 

I was a "graduate parent" for a while so if you have the opportunity to speak with parents who have already gone through it with their kids, it will be invaluable.

Edited by Ryrin

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OMW this is so much for you guys to go through! My thoughts are really with you, Mills.

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I can't offer much in advice, seeing as I'm a child myself, but I just want to wish you luck on this journey. My thoughts are with you and your family, be sure to update us. Sending love x

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Ithi, thank you so much. Don't think I'd have handled things as well as I had (if you can call it well lol) if you weren't around. You are a beautiful friend and mind. Be sure to tell Turin I said to keep it that way. lol I'm not goin to lie here either. My son is gorgeous. Take that! Like seriously, not tryin to be all vain or nothin but look at that FACE! I am indeed a lucky SOB. I try not to think about the state of things around me. ugh. It's just too much. I can't fight the bigger fight. I only have it in me to take care of what's right in front of me. Call that whatever you want but I just can't. So, I'll leave it to my betters and hope for the best. 

 

Ben, that is awesome. Yet another reason why I keep comin back to this community. I appreciate the offer and the advice. For a man who loves food the analogy hit true. One course at a time. lol Thanks.  

 

Hullo Ryrin! Thank you again for always checkin up on me lady. You are an amazing strength and resource. 

 

Yeah Ma, it's a lot. No more bravado left. It's a lot. Throw on top of this too my Uncle passed away the other and we buried him yesterday. My father's last brother. Don't sweat that too much. The man I bore was a stranger to me. Love him because he's family and a few childhood memories but I didn't have the opportunity to know him for the person he was. His passing just adds to the weight of things recently. 

 

Be careful Chae. I'm really not hatin the hugs. I may have to come back for more darlin. ;)

 

Pleasure to meet you Nebulae! I truly appreciate your time and thoughts. Thank you. 

 

For an update! Apparently I am a wishy washy person. We are NOT completely sold on NYC. lol We finally were able to have a talk with our son's primary about the up coming procedure. Wyatt's primary is an amazing Dr. who has a ton of experience with special needs children. She prefers to send people to Strong memorial in Rochester. Apparently they have a dedicated ICU for pediatrics, the lead surgeon, Dr. Altierez, specializes in pediatric cardio thoracic surgery and is a leading Dr. for this area in the US. After talking with Wyatt's primary we were advised to reach out to Dr. Altierez' office for a consultation. Our cardiologist's office sent on Wyatt's information and we are waiting to hear back. Dr. Altierez is out of the country as well. Hopefully I'll get a call by the end of this week. Once we do we'll most likely be taking a trip to Rochester for a consultation. Once we talk to them we'll be able to decide which hospital to go to. NYC as an option is starting to become more and more of an issue. We just aren't sure we can be that far away for something like this. So, we still have a lot of thinkin and planning to do one way or the other. 

 

Recently I've been trying to train myself and/or prep the house for after surgery. The challenge is: Wyatt can't raise his arms over shoulder height, we will not be able to lift him under the arms, no pressure against his chest and try to keep a two and a half year old child occupied and entertained so he isn't compelled to do everything a two and a half year old child is want to do. Like climb on everything. EVERYTHING. Or to not roll around. Just, ya know, not move really. O_O Been askin my friends for any type of loose fitting one piece sleepers that zip, snap or button up the front. Just real easy things to get on and off. Practicin how to move Wyatt from crib, to changin table to high chair to floor etc. without usin his under arms. It's harder than you think! lol I'm startin to really regret waitin as long as we have for this surgery, to be honest. We were waitin to see if the openin would close, I understand that, but having waited has added a layer of complication to this.

 

I am a member of a group called The DSDN or The Down's Syndrome Diagnosis Network. It's an excellent resource group that primarily focuses on the diagnosis aspect of DS and the lack of information that is made available to parents on a diagnosis of DS. I was invited to a sub-group of the DSDN called The Rockin Dads! whoooo I rock! lol One of the 'catch phrases' of the DSDN is Rock the 21! Hence the Rockin mom and dad groups. Anywhoot! So, I reach out to my fellow rockin dads and moms about tips for how to prepare for a toddler who has a mending sternum and I got NOTHIN. I'm hard pressed to find a family whose child has undergone similar procedures that is older than 7 months. After care for recovery at home with an infant is easier. Their movement is still incredibly limited. I'm supposed to follow those guide lines for 4 - 6 weeks. We'll find a way how because we have to but I just don't know what that is right now. 

 

So, there we are for now. Still waitin by the phones and plannin as best we can. 

Pleasure to meet you Nebulae! I truly appreciate your time and thoughts. Thank you. 

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Hullo Nyn!!! *fondles*. . . . .  . errr, sorry. public place . . . . . . *obscenely fondles* . . . . . . 

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Soooooooooooo, how's about an update? If anyone is interested. lol 

 

We had a pretty eventful weekend this past. We finally had our consultation with the cardiac care unit of Rochester Strong Memorial Hospital, Friday. The Doctors we were speaking with, whom sound to soon be villains in your next fantasy novel/game series, Dr Vallerian and Dr Altierez, were absolutely incredible. Dr Vallerian was open, frank,  thorough and compassionate. He answered every question completely and with ease. He fully described what was going on inside my son like I'd not heard so far. I feel we have such a better understanding of what it is and why they have elected for open heart surgery. We also learned that, as these openings go, Wyatt's is actually quite large. over 75% of the septal wall is missing. We hadn't quite grasped that from our cardiologist here. Not like that information would have done anything for how we look at it. Well, aside from prolly making us panic a bit more. lol Though, I think knowing the whole picture now has helped settle us more. Knowing the specifics and not making this some undefined amorphous creature to face, has made things more bearable. Less room for my already uncontrolled feverishly paranoid imagination to run away from me. lol. 

 

So, open heart surgery is due to the placement of the opening. Picture a number 8. Now squish it down a bit from the top so there is a bit more of a straight line separating the two circles. This is now a basic top down view of the atria of the heart. if the opening were somewhere in the middle of that separating line, with a defined edge all around, they could do the arthroscopic procedure of placing what is basically a plug for a nose gauge, is how I picture it from the description given by Dr Altierez, into the opening. The opening Wyatt has is flush with the posterior wall of his heart so only has about 75% of a ring for the plug to fit into, so, less likely for it to stay in place.

 

When Dr Altierex was finally able to see us I was. . . . impressed. This man is an ogre. Just massive in all dimension with a presence of personality that dwarfed his physical stature. He is the head of the cardio care unit, lead surgeon and will be Wyatt's surgeon. He is a premiere surgeon in this field and has assured us of Wyatt's care. It's not often I've met someone who just. . . . radiates with confidence and command. 

 

Needless to say, we have chosen Strong Memorial for Wyatt's procedure. Now, we just wait to hear from Dr. Altierez. office for scheduling. Most likely not until after the first of the new year though. So. . . . BRING IT ON!

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Mills, I'm so glad you have such great doctors. It has to be such a relief to be confident in the doctors who will be operating on your son.  Whew! We'll continue to send prayers for him for you and your wife AND the doctors!

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Oh they sound wonderful! In this day and age, it really is a blessing to get a doctor who gives a damn, never mind ones as lovely as those 2.

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