Unsettling realizations of Sammys future

[Dara]

Marguerite, I think you misunderstood how I am and feel about my son. I am venting here but that doesnt mean that that is how I am around him. I dont look at him as a child out to get me. I know the facts about him and what we and the doctors have said. He has developmental delays and that is just a small part of the problem here. He is also suspected to have ODD. He has severe behavioral issues at home and always has since the beginning. IT is hard to describe without you meeting him and seeing what we are talking about. He is very stubborn, likes to be in control of situations. His language is delayed but not in the way everyone is describing. He has language, he has sentences and he has always had the ability to communicate his wants and needs. The problem lies in what he understands in the conversation and his ability to converse. His language has stagnated it seems for some time now. his language skills are about the age of a 2 year old. I say this comparing what I have seen with kids his age working in the preschool and is used just to give an example of where his skills are. He is a very interesting, unique and quirky chil and none of that is meant in any negative way. A lot of the time, his behavioral issues stop him from moving forward so we have 2 sides of a problem working against each other so it is very hard to figure out how to best help him. When I come here I am venting. Yes, there are days when I wonder which one of us is making it out alive but for the most part I have my sense of humor about me and just deal with it

 

[totoro]

Dara,
I know it is hard... sometimes when I post and every one offers a suggestion.. I am like "I have TRIED that!!!" or "YOU don't get it" !!!! But then sometimes something new will be posted that I have not tried... I think we are all feeling a bit frustrated for you!!! LOL we really do want to help you and are just throwing out ideas that may have helped us or others... by no means is any one judging you, or I would hope no one is. I honestly feel for your situation. I think most of us wait to hear that Sammy is doing better...
You can come here and vent... we really are just trying to help. He is just so complex... we want something to work!!!

I really am sorry you have to struggle with the waiting and the ups and downs...

 

[Dara]

I know everyone means well. I also know that is very hard to comprehend all of Sammys issues. I know him well and I have a hard time. He is one of those kiddos who goes against everything you expect of a child with issues. There is the norm of dealing and helping children with special needs and the norm just doesnt work with him. Nothing seems to and that is what gets so darn frustrating! We just got back from a healthy meal at Burger King and Sammy was playing in the play area. Well wouldnt you know it, he wouldnt come down. my husband goes in to get him and of course this thing is impossible for us adults to get through not to mention try getting your headbanging tantruming child through there too. I am on the other end because I just had an injection for the 2 herniated discs in my neck an am trying to let that work before I wrestle with Sammy again....TOO LATE! husband pushes him through the tunnel I pull and end up flying down the stupid stairs and guess what, I hurt myself again! husband and I did end up laughing later because there was this poor father and his 2 kids in there eating pretneding not to witness this horrific event. I dont even know the point I am trying to make...I dont think I have one at this point! I think we feel utterly helpless on what to do anymore because nothing works. We have tried so many things and listened to all of the therapists and doctors and done this and that and ignored and gave attention and blah blah blah but the fact is we always end up right back at square one and nothing changes. We are still prisoners in our house. We still cant go anywhere or do anything. We still have to wrestle him leaving places and changing his diaper and saying good job is apparantly a bad thing or asking him if he wants his juice is not good either. Saying lets go play outside thats a big no no. I am just tired and I dont know what else. I am tired of hearing how its my fault. You get to the point where you believe it and second guess every single thing you do wondering is this the cuase or did I do this wrong to cause this.... We cant go on any vacation anywhere. husband and I barely get to spend time alone together. There is no support from anyone we just have each other. I think I have finally reached my breaking point and I was supposed to go to therapy through pain management but my inusrance doesnt cover mental health and we cant afford to pay it plus all of Sammys medical bills which health insurance doesnt cover and I need a job but who will hire me for 4 hours 3 days a week?! Sorry...big vent!

 

[1905]

He sounds like he would do GREAT with Pecs. Do you know what that is? It's a picture exchange communication system. It's so cool. My students use this. They all have their own books. The books are filled with pictures, the students carry these around all day and communicate different things. They use sentences. Like if he was thirsty, he would use the picture for "I", then the "want" picture, and the "drink" picture. He puts them on a stip in the front of the book and hands it to you. Also our kids use a pecs schedule. They can see what they will be doing each day, and they then "check" their schedules as the day goes on to see what it's time for. (Circle is finished, time for art) The child pulls off the "circle" pec, and moves the "art" pec to the top. We constanly make new pecs, on the computer and that's how they communicate. They're all non-verbal, or language deficiant in some way. Google this- PECS.-Alyssa

 

[jannie]

Dara-
I am sorry what you are going through--You sound beyond stressed...so many of us wish we could really help you. It sounds like Sammy is one tough cookie--I think you may just need to do something different..try the sign language thing...trial the medication prior to going to the Mayo clinic. I know you've been waiting and anticipating this appointment...but regardless of the outcome you will need to trial different things. They may give you a new diagnosis...or they may suggest medication...probably both...maybe his anxiety is just so bad that he is so overwhelmed and just unable to comply. Maybe anxiety medication will really help him...maybe the chlondine that was suggested.
Our life was awful and medication really helped. Is he still refusing to walk in public and insist you carry him? Maybe the walking thing is an issue to press. Maybe you should tell him if he wants to go somewhere he needs to walk himself...because when you carry him and then he winds up freaking out and you're carrying him screaming and crying I can only imagine the extra frustration because you carried him into this place just to be carried out.

In regards to the language delay...it is important to remember there is a huge range of typical development. My son had only a few words when he turned two and the school system would not identify him as needing services....so if he is at the developmental age of 2 this could include a wide range...how are his receptive language skills? Does he understand, just not able to express? Issues with language, anxiety, and refusal to speak could lead to elective mutism issues...so I'd consider an alternative method for now. Even if he is refusing to use words you would at least understand his wants and needs. Right now, you don't know what he wants because he is refusing to speak.

If you comply with his requests is he generally more compliant? Are these battles from hearing the word "no". I guess I'm wondering if he is turning it on or off or if he's noncompliant and challenging when things are going his way.

I'm not meaning to upset you, I'm just trying to give some suggestions as I know you're really struggling.

I also made a chart that I gave a sticker or a star each time my child followed directions right away. We'd fill it up pretty quickly and then he'd see the benefits of listening. It was very open ended and he could earn stars pretty often.

Sening hugs--

 

[SRL]

I've known of kids whose "nonsense words" turned out to be alternative languages they were developing and they took great pleasure in using them. Of course at the time many parent didn't recognize it for what it was because it sounded like nonsense.

Dara, again I'm sorry for what you're going through right now. Maybe it would be good for both us and you if you let us know in each post you make if you're "looking for advice" or "I just need to vent--no advice please". Either is fine of course, but if nothing is working and/or you've hit your limit on trying anything else then parents can save posting time by giving support only when you need it instead of advice.

Remember if he starts to really spiral downward or is becoming a threat to his own safety or that of others don't hesitate to call your doctor to request the appointment be moved up if possible.

Hang in there. I know it's tough.

 

[flutterbee]

Dara -

I'm sorry you're struggling so much. While my child isn't as complex as yours, she too is one of those that the 'traditional' methods don't work for. It is soooo frustrating and I still to this day find myself thinking that we have to find SOMETHING - ANYTHING - that will work. She, too, is stubborn beyond comprehension, let alone explanation. Although, I think my mom put it best when she said that difficult child, "is so headstrong in her own self-defeat".

At the age of almost 13 we are just getting to the point where things are finally starting to click. I wish I could point to something and say this is what worked, but I can't. Because, honestly, I was shooting from the hip most days. Just constantly wracking my brain for ways to communicate with her and help her. We have never gotten very far with therapy; part of it is because difficult child would only participate to a point, but a big part of it is because noone ever had a strong handle on her. difficult child's therapist even said to me at one point (when I made a comment about wanting to educate the school so that when the next kid came along they would be better prepared) that she didn't think they'd see another kid like difficult child.

I'm not at all a perfect parent. Like you, I have and still do second guessed everything. There were a lot of days where I just couldn't do anymore and would give in. I just could not handle another battle. Other days I wouldn't back down. Really, the only thing I did consistently - cause, like I said, I was always searching for something so I changed what I did a lot - was cause and effect. You do X, you get Y. She didn't make that connection, but eventually after repetition, reinforcement and talking about it, it's started to sink in.

((((((hugs))))) I know it's frustrating. I wish I had more to offer.

 

[Dara]

Jannie, we did try the sign language but he did not take to it. SRL, I often refer to those nonsense words as NELL if that makes any sense. I wish I could show you guys the video of it, it would explain so much. He odesnt say these words with any seriousness. He says them and laughs. He is not asking for anything or trying to express anything when he uses these words. He is just being silly. With all of his issues he does have a fantastic sense of humor. The issue we have with these words are he chooses not to answer you or aknowledge you at all. It isnt that he cant hear you or doesnt understand what you are saying at that point in time, you can see it on his face, he is smirking as he is doing this. He chooses to use the "nonsense" words to answer knowing it isnt an answer. For instance, we will say, "what do you want to eat?" and Sammy will look at you with a huge grin and say "Puyit" He knows that question and knows the answer to that just fine he even knows to say "I not hungry"
The problem with this is you end up having to make a decision and he never likes it. I do have to say that he had a fantastic evening tonight which was very nice and needed!
Truthfully sometimes I dont know if I am venting or wanting advice or what. You reach a level of frustration and have no idea what you want or need to do about it! Thank you all for all of your support. I just hope that someone can figure out soon!
Oh! Jannie, the walking in public thing is something that i have been begging for them to address for over a year. It has been mildly addressed and lately, on his own, Sammy has started walking more and more in public. He will hold hands on occasion but baby steps on that one so we are happy about that! Also if we do comply with his request it doesnt make a difference. Some days he is going to fight no matter what you do and some days he is great. There is no rhyme or reason for it, I assume there is within his brain but no outward rhyme or reason for it. Sorry, I am trying to answer the questions so it this post must seem a little wacky. I am a bit more relaxed right now because our night was so good.

 

[Big Bad Kitty]

OK, here is something you may not have tried, and if you have and it didn't work, hmm...

OK. You say "Sammy what do you want to eat?" He says "Puyit" while grinning. OK, I don't know what your reaction is. Try this: Say "OK, Puyit." If he starts to rage, let him. Seriously, just let it go. Go into the kitchen and make something (predetermined-try something that he has never seen before that he may like if he tried it. Maybe crackers with butter or something. But know in advance what you are going to do) If he follows you and says "No, I not hungry", fine. You got your answer. If he follows you and says "PBJ", fine. Make him a peanut butter and jelly sandwich. If he either keeps being silly, does nothing, or rages, keep making the "puyit". Then, bring it out to him. "Here is your puyit, Sammy." IF he decides he does not want to eat it (most likely), tell him "but this is what you asked for!" keep it up. Out-silly him. He'll either give in, or call your bluff. If he does, then say "fine. More puyit for me." And eat it.

Just try it. See what happens. If he is truly just being silly, he is doing it for a reaction. Surprise him and give him a reaction that he does not expect. But then you have to be willing to stick it out for the duration, and not let him wear you down.

 

[smallworld]

Dara, there are lots and lots of reasons children behave the way they do, and you're right that sometimes even the professionals can't explain why. My son is 14, has had two neuropsychologist evaluations confirming his mood issues, has been with the same very competent psychiatrist for two years, AND we were getting nowhere with medications. Because he completely shut down in school (wouldn't do any classwork or homework) this fall, he recently ended up in a day treatment program at a local psychiatric hospital.

For a few years, we've been unable to figure out one of my son's symptoms -- when he is being defiant, he smirks. He has told us that he doesn't do it on purpose, that it just happens. His pediatrician, his neurologist, his neuropsychologist and sometimes even his psychiatrist felt J was somehow enjoying being defiant and getting some gain from it. My husband and I weren't so sure because J is a very honest kid, and he kept asking us, "Why am I smiling?" On day 3 of the day treatment program, J's attending psychiatrist (who we've heard is very sharp and a great psychopharmacologist) told us his smirking while defiant is a symptom of mania. We were stunned because his outside psychiatrist said he was seeing only depression and no mania. The new psychiatrist decided to add a second mood stabilizer to augment his first to see if that would make a difference. It's still too early to tell for sure, but so far, so good.

husband and I are very astute observers and we know our kid well. Furthermore, J's been under a medical microscope (in a large metro area on the East Coast) for many, many years. But no one -- not us, not his medical team -- picked up what's been going on with J. This is all my long way of saying that sometimes things aren't as they appear, and it takes a very good diagnostician to put all the pieces together. I hope you have that opportunity when you take Sammy to Mayo.

Many gentle hugs to you tonight.

 

[flutterbee]

That's a very good point, SW.

I laugh as a nervous reaction. A few weeks ago when we moved into the house, I was walking into the kitchen just as my mom was stepping onto the chair to put something away. I could see it in slow motion: the chair slid on the floor, she tried to catch herself on the counter, I was afraid she was going to crack her head on the counter and there was no way I could get there in time. She then went down on the floor on her behind, then her back, then her head and her head bounced back up. I started to laugh. I suppressed it because people tend to get upset at you for laughing when they get hurt, but my shoulders were shaking. Now, I didn't for one second think it was funny. I was very worried about her. But, I laugh when things like that happen and I've learned over the years that it's a nervous reaction.

difficult child does it, too. She'll start laughing uncontrollably at the weirdest times and will have no idea why she's laughing.

 

[Marguerite]

I was thinking that too, about the smiling when he uses nonsense words. We smile for many reasons - sometimes because we are happy, sometimes because we are nervous, sometimes because we feel safe and relaxed.

I still think (sorry Dara) that this isn't primarily to cause you distress. I do think he is smiling because he is relaxing her and doing this to take pressure off himself at some level. Plus, yes I think you are right - it is a game. But a happy game he is trying to play, because sometimes life is so hard.

I do understand that you are venting here and trying to not let it 'break through' in your dealings with him. Thank you for reassuring me, it is so difficult to put aside feelings that our child is being deliberately obstructive when it often seems this is what is happening.

Your son sounds so much like difficult child 3 at the same age. Although your son sounds further along with his language. Only a bit, though. And it is a worry when they seem to stop progressing, and you wonder if they'll EVER learn anything more. I remember the sense of utter desperation and panic I felt, when I couldn't get any help for him and at the same time i was being questioned by DOCS (our equivalent of CPS) for alleged neglect (due to his language delay). Very frustrating.

Your son also sounds extremely intelligent, despite the "developmental delay". That touch of humour you describe, some of the other things - I suspect there's more going on in that head than has been credited by those assessing him. And again, we saw this with difficult child 3 - he 'failed' his first IQ test, they told us he was "borderline" and would never be able to go to a 'normal' school.

All I can share with you, is what worked for us. But something for you to hold on to - by watching him, observing what he had an affinity for and using that as the starting block, I worked things out for myself. I went to where he was and started from there. In difficult child 3's case that was letters and numbers. Your son will have his own point of contact.

We do have to change our methods for kids like ours, because they seem to learn in totally unexpected ways. I also studied child education (in a former life) as well as helped raise my sisters' kids; difficult child 3 was totally different and I was caught unawares. We struggled until we realised that if we continued to butt heads then we, the parents would lose - and that would be a disaster. Now he's almost 14 I read about children like your son, and remember - with amazement.

I wish I could meet your son. I wish you could meet mine.

And feel free to vent away, that's what this board is for. But we all tend to want to fix things - I guess it's how we're driven. Sometimes we need to learn to just listen. Not easy!

Marg

 

[susiestar]

Dara,

I have no wisdom to impart, but I am keeping you in my thoughts. I hope that you can find out what is ticking in Sammy's mind and help him. I think BBK's idea of making a "puyit" and surprising him with it is an interesting one.

We had a family member who's youngest was much like Sammy. Only he invented his own entire language and for many years only spoke his language. His older sister was the one who figured it out and translated for him, pushing him to use english. She was only a few years older but listened to the therapist (mom had no sitter so both kids went to the appointments) and pushed J to develop speech. He is now in high school and doing very very well.

Sending hugs,

Susie

 

[Dara]

BBK, I will have to try that one to see what he does. I am interested to see his reaction.
I would not at all be surprised if they told me he was having manic episodes. husband and I have been saying that all along. IT is literally a roller coster ride over here.
Sammy is very intelligent despite all of his delays and everything else. Sometimes he seems too smart for his own good. I think that too is part of the issue. He is so smart and cant get it out! He does have a great sense of humor and he loves music. He sings almost on key taps his feet and claps on beat. I come from a long musical background so that might be a great outlet for him when he gets a tad older. I must go get him. He is now awake and I am typing without my glasses....
Thanks for the ideas! I will let you know what happens there with that one!

 

[SRL]

Have you looked into Kindermusic, Dara?

 

[Dara]

Actually I have but they dont have classes for his age group at times he can o i that makes any sense. He does do gymnastics on wed. evenings and loves it so we will see what we can find for him!

 

[butterfly31972]

Hi! I understand Dara to a point what you are going through. My Sammy has such a hard time in public I am too embarassed to take him out. It is really bad because he is getting bigger and looks more ridiculous than before! He is four and no longer as small as he used to be. We just carry him out and die of embarassment the whole way out of the restaurant, etc...

And I have a hard time explaining to people because they say "Well, you should have done this..." Sometimes I just wish people would just say "it's O.k. mine did that too when they were so and so age." Never happens!!!

I want to enjoy him when we go out. He is a beautiful child but his actions are not beautiful and you don't know what will set him off.
Sometimes I get up strong and can take on him and the world and other days, I just can't!!! I feel for you and know how you feel!

Thank you for sharing your story.

 

[tammyjh]

Its still hard to take my difficult child out in public sometimes because no one knows what will set her off. She threw a fit because we wanted her to order her own food at McDonalds. I assumed that she would want to because the other kids do it and she gets mad if I don't let her do what the others do. When she was little, she tantrumed every time we went out over anything. She was running down the sidewalk one time and ran into a pole. Instead of running back to me for comfort, she threw a fit and raged about "THEY SHOULDN'T HAVE PUT THAT THERE!!!"

As far as the speech, it may be better for Sammy right now if its noticeable that he's having issues. My difficult child was slow to start talking but once she started, she really learned fast and had/has a love for big words. Unfortunately, it foold people/professionals into thinking she's a lot smarter than what she is. So, its been hard to get services because people will try to completely ignore the neuropsychologist exams because they think that if she can be as articulate as she is, she has to be as smart as she sounds.

I know its frustrating to try to explain and want others to "get it" but not everyone will. Just stick to your guns and keep advocating like you have been. Hopefully Sammy will hit a developmental spurt that will blow you all away.
Good luck :smile:

 

[Dara]

It is so hard going out places and suddenly he is tantruming. Then you get all of these stares and people shaking their heads at you. I am sometimes embarrassed but most of the time I am so preoccupied on getting out without getting beaten. I do have to say that my all time favorites are as you are desperately trying to leave wherever you are in the quickest possible fashion and you are carrying a screaming thrashing kicking headbutting hitting, pinching and whatever else maniacal child, these people stop directly in front of you to stare. I am always like get out of my way if you dont want to get hurt! It is hard to go out because 9 times out of 10 you leave in this very scenario. The times we dont leave like that are so exciting for us!
Sammys new favorite word is S**T. Of course he repeats it over and over and over again. You cant really say "that isnt a nice word or dont say that" beacuse you will have a screaming tantrum and he will continue to say it anyways. My grandmother is insisting that he will suddenly become a very easy child. How nice would that be?!

 

[Steely]

Wow, Dara........I have to say that Sammy reminds me in many ways of my son Matthew. He is still does not have an accurate diagnosis, to this day. I am just now realizing how bordeline AS he is..........but, no one has ever really approached me about this until his last phosph visit..........despite being neuropsyche tested 3 separate times in his life! There has been a NonVerbal Learning Disorder (NVLD) diagnosis, but he still did not fit their criteria as AS. Same with the BiPolar (BP) diagnosis, that took us 12 years to get, despite me knowing it in my gut since he was 2.

I have just tried to lead my life with Matt as if I am the expert, because he fits no mold that any dr has every described. Often it makes me feel as if he is so ill, that no one has ever even seen a child like him - but other times - especially as of late - I just know that Matthew fits no mold, because he is Matthew. He is a combo of many different illnesses, but not one completely.

My mom is always asking me, gee, I wonder what goes on in his mind - and I say, well, just look in his room. His room is a pit from hades........and no matter how many times we organize it, or clean it - give it one day and it is like a tornado. I really believe this is a reflection of his brain. There are few linear thoughts in his little head - most of them are a tangent of creative outbursts, sometimes firing, sometimes misfiring. Like Sammy, he is super smart, very creative, very musical........but prone to tangents, manipulations, and a deep rooted anger.

At Sammy's age he loved to scream cuss words, over and over. It was maddening. Was it because he was mad, or because he made everyone else mad, it was hard to tell? I still have vivid memories of the looks on people's faces.

Just thinking of ya tonight, and wanted to let you know I understand. I am so glad you had a good night.