Unsettling realizations of Sammys future

[Dara]

Sammy has been going to the Day Treatment Center for about 3 weeks now. He is used to this place because it is where he has had therapy since he was a year old. husband and I have had certain concerns which we have brought up to many different medical prof. many a time but now the therapists are really seeing them since they are spending 18 hours a week with Sammy. His comprehension levels are way off. He is not understanding much of what he should at this age. They are going to test him in 2 or 3 months again but they are saying which we agree with, that he probably has the comprehension level of a 2 year old. I have no idea what you do for this and if it will improve and how. Which leads to his language skills. He definitely is better off than some. He can speak in small sentences he has many words however, it is not improving. It seems to have stagnated for some time. He does not have conversational language at all really. Part of that is that he cannot comprehend enough to converse. husband discussed with the therapist that he is concerned for the future like kindergarten or first grade, how is he going to retain information and have the ability to learn and the therapist agrees that we are getting to the point of seriousness to that concern. I guess I should also point out that there are no long term effects with discipline. For instance: Sammy doesnt listen, give 1 warning, still doesnt listen, take whatever it is away he is upset for that moment has no reccolection of that happening again or even any knowledge of what he did. Most 3 year olds, you can say, We didnt do A because you did not listen to Mommy and Daddys words. Or you can say to them do you know why we didnt do A and they can answer yes because....
There is some concern of what information he retains and what he doesnt if that makes any sense. Ok, I am done. I am just very concerned and dont really know if there are any answers out there!

 

[maniacmansion]

I don't really know what to say, but good luck & hugs.

 

[ggluvbug]

The fact that you are getting him early interventions will definitely make a difference. I wish I has some answers, but all I can tell you is children make tremendous strides when given the proper support. Since you have worked with little ones before, I know that you have seen this.

 

[Big Bad Kitty]

Big hugs, Dara.

Mayo clinic cannot come soon enough. Praying really hard for that little guy.

 

[mrscatinthehat]

Sending hugs.

beth

 

[Marguerite]

Sammy's only three. And with our kids, you can't make them live to standards of "most kids". Although I know that seeing the discrepancy here is worrying you, understandably. But direct your management of Sammy to his abilities, not external standards of "he should understand."

If his receptive language is not up to par, then he won't understand. And he will only remember stuff that is important (and relevant) to him, in his frame of reference. For example, how many babies can remember their first birthday party? And yet skills they are clearly learning at that age, such as walking, stay with them. The answer is, for a one year old the party is entirely incidental. Not important, to them.

What you need to focus on is communication. Encourage Sammy to communicate his wants and needs. He's just not ready for political commentary, so keep it very simple and basic. Use Compics if you have to, if spoken words are not 'clicking'. It's still communication using abstract representation.

Read books to Sammy. Picture books, baby books, big text with lots of pictures - try to engage Sammy as much as possible but don't force it too hard. Maybe pick a time when he's more inclined to cuddle.

Write "Sammy stories", or stories about Sammy in picture book form. Write about a typical day for Sammy, or maybe a special time you had on an outing he enjoyed. Take lots of photos and put the photos into the book. I used photo albums to display the books, because the pages are easy for little hands to turn without wrecking them. We used a book like this to teach difficult child 3 to remember his name and address. He listened to us read his book to him and memorised the text (relevant, because it was about HIM).

If your current discipline method (probably perfectly OK for most kids) is not working, then don't do it. Sammy isn't 'most kids'. You need to develop your own, Sammy-friendly methods. From his point of view, he hears you making sounds from your mouth, then you come back and make more sounds with your mouth, then you take his toy away. He can't connect, so clearly he's not learning anything.
The best way to handle it - if he is, say, poking a fork into a power socket, you remove him from the power socket and give him a more appropriate (and safer) toy to play with. Distraction. If he's making loud noises and you can't heat the TV, then either move him to another room or take yourself to another room. Or tape the TV program to watch later.
When difficult child 3 began to crash our computer in order to bypass our password protection, he was about as non-verbal as you describe Sammy. It took a while of banning him from the computer and subsequent careful watching, for him to learn that crashing the computer was wrong. We eventually got him his own computer - we never banned him from that one.

The word "No" does get learned fairly quickly, if you use body language and physically removing him at the same time. That helped us a lot. But you don't want to be saying no all the time, it's not helpful. We used reward a lot, distraction a lot, stimulation a lot.

Early intervention is wonderful. We got too little too late. One morning a week at age 4. Just enough to disrupt his routine, nowhere near enough to be useful.

Keep stimulating him and surrounding him with the things he likes and can do, and follow your instincts. Use what resources seem to work and fingers crossed.

Marg

 

[Arttillygirl]

Excellent answer Margurite
I'll pray for Sammy

 

[BusynMember]

Hon, my son was so much like Sammy, although he did understand speech (he couldn't express himself and it made him nuts). My advice is to focus off his behavior and get him specific help for his problems--ABA is good for speech, Occupational Therapist (OT) and PT are probably good for him. Social skills would help. He will probably (from my own son) continue to lag behind, but he will also catch up quickly at some point in time, but likely not be a "typical" child who "gets it" unless he has interventions SPECIFIC to language and social skills issues. YOU NEED THEM. His school district can give them, even at his age. After three, kids with his deficits do really well in Early Education. Does he go to school every day? I don't think focusing on his behaviors is helpful because I believe (in my opinion) they are due to his frustration with being unable to figure out what's going on in his world. My son had diagnosis. of cognitive delay not otherwise specified, speech delay, Sensory Integration Disorder (SID) at Sammy's age and going to school five days a week (half days) plus a half day in Head Start made all the difference in his life. He still needed help, and Special Education for a while, in school, but his life is richer, fuller than we ever dreamed it would be. And now he "gets it." Again, because all kids develop differently, I do want to emphasis that Lucas may have improved fast because he always understood speech, consequences, etc--he just couldn't express himself. So have patience. Nobody has a crystal ball on your son's future. Take one day at a time and focus on the here and now or you'll go crazy. Get him the help he needs from the school district.
Sounds like you're already in the right direction. (((Hugs)))

 

[wakeupcall]

Dara, would you consider learning a bit of sign language? Our youngest granddaughter is perfectly normal (whatever that is) and from a VERY early age our daughter started teaching her some sign language. By the way, my granddaughter is 1 1/2 years old this month. She picked it up quickly because it was short...and got her what she wanted. I have been totally amazed at what she knows of sign language!! She is now using words along with the sign language, but it's really something to watch. There are books at the bookstore on teaching young children sign language. It might be a way for both of you to communicate better.

 

[slsh]

Dara - I think it's good that staff are seeing your concerns now and are going to investigate further. Of course it's very worrying when our kids don't hit milestones as expected.

But... he is only 3. There can be a pretty wide scatter of "normal" at that age. He may just be taking a while. It's absoluely far too early to start worrying (too much) about the future. Kids can make remakarkable leaps.

You've done an outstanding job of getting early intervention in place. I'm a huge fan of EI and think it can really help kids who are maybe lagging a bit.

I do like Pam's suggestion of sign language, just as an additional tool for him to use. Maybe also a picture board?

Try not to fret, though I know that's hard. You're doing everything right and getting good people involved in his treatment. Follow Sammy's lead and your mommy gut.

 

[nvts]

Dara: I can tell you what to think about Sammys future - it's the same as anyone else's. See, we don't know what's going to happen from one day to the next. One of the parents in our neighborhood had a easy child. Athlete, popular, smart. Freak accident, hit head now has the mind of an 8 year old in a 17 year olds body.

Sammy is getting the love and support of you and your family, the professionals working with him and the environment that he's being educated.

difficult child 2 had a horrendous speech delay. If he had to go to the bathroom, I had to walk him thru, step by step what to do or he'd forget a few simple steps like pulling down both the outer and underpants.

The suggestion of writing Social Stories for Sammy is great. There's a website that will do a freebie for you and it gives you great insight to how to write them (they personalize it so the individual child gets excited). Here's the link:

http://www.sandbox-learning.com

Update to now: He's testing on the superior range and all of his IQ tests, he talks very well (still some delays, but not significant) and has a great sense of humor. He's starting Social Skills classes in February and things are looking up.

You're doing all the right stuff right now. Work with the clay today, and you'll have a vase in the future.

Beth

 

[Dara]

The reasons we havent done sign language are because we want him to use his words. He does have many many words and he is able to put them together is short sentences. We are trying to encourage his use of words. Sammy is one of those children who wont do things unless it is expected of him. If he can get away with not using words as he has in many situations because we know what he wants and are tired of battle, he doesnt use his words. A lot of things that are going on with Sammy do cross over into the behavior area. He has several words which are nonsense words. He actually knows they dont mean anything and laughs about using them. The problem is, he will decide sometimes to only use these words. He gets nothing out of it except joy in using them for annoyance purposes. He is so darn strong willed, it is infuriating! It is both a blessing and a curse! He will succeed at whatever he puts his mind to whether it good or evil! The thing that is so difficult about this situation is that nobody has any idea of what his capabilites are or his diffinciancies are. We literally have no idea what is going on/the cause or anything i guess. The thing that is equally frustrating about all of this is that he can be having a fabulous day and then either you try and help him or even compliment him in any way and BOOM fun over! Now he wont even leave the house he will say "Im just done".
I hope the Mayo Clinic has some advice or answers or something but part of me is terrified that they wont know either!

 

[Big Bad Kitty]

Dara,

I know that what you are going through is tough. But, in my humble opinion, you need to be a little more flexible with Sammy.

You say that you have not tried sign language because you want him to use his words.

So. How's that working for ya?

Seriously, it sure seems like he has other plans. Why not give him the option. Sure, he may have the capabilities of speaking. What if it is unbelievably difficult for him to do? Neither you nor I nor Pope Benedict know what is going on in his little head. And Mayo is not for MONTHS. Why not introduce the sign language, and see what happens? I see one of 2 things: Either, he accepts it and gets less frustrated, causing less tantrums. Or, he rejects it, and you are no worse off than you were before.

Our kids are wired different. We have to be creative and resourceful.

(((hugs)))

 

[totoro]

BBK Took the words out of my mouth... I know it feels like you are giving up at times by giving in, but when he says or acts like he is DONE, maybe it is for a reason?

We had to use sing language for K when she was much younger, everyone thought we were using it just to advance her, but it was because she was slamming her head against the floor... she did not know how to communicate. I thought at the time she was stubborn, being a brat... able to control herself... little did I know what was really going on. But luckily that Mommy gut took over and said try this. Sign language helped so much.
K is 6, she still can not wipe her bottom, well she can. But honestly feels overwhelmed by it... can she explain it to me? NO, she just can't. Is it worth me Making her do it? No, I have her try it, when she is not in a mood. because the alternative is a huge mess and a rash. Can she dress herself? On some days... Most NO. But she is not Autistic, she struggles with overwhelming fears, and anxiety and self doubt...
Can she really explain any of this to me or doctors? NO. When I fill out the forms are there spots and sections for any of this... most times , No...

So it makes it complex, it has made me have to change my ways!!! ALOT!!!
If this means she does not follow the traditional school route, so be it. I have to think about her mind and her anxiety. I don't think these kids are always trying to manipulate us. Even if they are laughing, and smiling when they are doing something... I think there is so much more going on.
None of these kids wants to go through these things... I couldn't imagine?

I was a kid difficult child and I did not like the way I felt most of the time!!! LOL
I know you are are trying everything... I know it is hard, so hard.
I just think you have such a complex little boy... maybe more complex than a lot of G'sfg... or maybe in different ways.

You have gotten some great advice... Sometimes just given in and seeing what happens is the best route... I have to do it all the time. And you know what? We have all survived!!!!

I let K lead a lot of time... (within reason)

Hugs

 

[Dara]

In the past we have tried using sign language but because of his behavioral issues it wasnt working. You have to understand that the language issue and behavioral issues are separate. Every dr we have seen is in complete agreement there. He has language skills I think that is what you are misunderstanding. He is rarely screaming from lack of our understanding or his understanding. His rages often have nothing to do with that. Our form of discipline is very simple. Throw something at me or hit me, you go to time out or basically a safe spot where he can rage without reward. Yesterday is the perfect example of how behavior and rage issues are the problem that take over everything else so it is very difficult to address the other issues when rage and negative behavior get in the way. Sammy does very well at the therapy. He does what is expected of him. However, we can do the exact same thing and have done the exact same things that we were told to do with him and he WILL NOT do anything that is asked without a physical battle. His therapsits have seen it and tried to coach it along but it does not transfer. Only the therapists can do these things with him. That is one of our major problems is that we will make all of this progress in therapy but none of it will be seen in our home.

 

[Dara]

We cant possible be any more flexible with him. Its not like we are over here taking out options. He is just not accepting them. When he says hes just done it is because he doesnt want to do what we are asking of him. Sometimes its not an option. Soemtimes we have to leave the house and it is not a choice. He does not get to dictate EVERYTHING. He has the need to be in control of every situation and many times it isnt appropriate.

 

[Mrs Smith]

I can empathize - some days, the best you can hope for is survival. My son too was great everywhere but at home. I hate to say it, but the only way we made it WAS to let him dictate everything. He eventually came around with interventions and natural development.

Try not to get your hopes up for your upcoming appointment. Prepare yourself for them telling you they don't know and that he's a really complicated kid. There's still so much unknown. You'll have to find your own way. So sorry.

 

[smallworld]

Dara, I'm sorry you continue to struggle. I hope the evaluation at Mayo will give you the answers you are seeking.

 

[Steely]

Have you had a chance to read Temple Grandin's book yet? If not, I really think it will give you a tremendous insight into how these kiddos minds think, even at that age.

Big hugs and prayers sent your way. For whatever, reason, I think of lil Sammy frequently, and you are in my thoughts.

Take care
Willow

 

[Marguerite]

Dara, you said, "He has several words which are nonsense words. He actually knows they dont mean anything and laughs about using them. The problem is, he will decide sometimes to only use these words. He gets nothing out of it except joy in using them for annoyance purposes."

I know it seems it, but I don't think t his is to annoy. Or it may have morphed into a bit of that now, but I think the primary reason he uses these nonsense words, is he knows he doesn't have to try, with them.

Our kids get tired too, often very mentally tired and for a while anyway, they just stop trying because it's too hard. It could be happening more at the end of a day; maybe more if he's coming down with a cold or teething; anything that makes life a bit harder for him in some subtle way, and he throws in the towel in a big way in other areas.

You need to change your mind-set. I think this is upsetting you even more than any benefit you might have. At the moment you have your guard up with him as if there is a "me vs him" need in you. This follows on to you seeing him as taking fiendish delight in annoying you, which I don't think is his primary aim here.

You and he have both gotten into bad habits in your interactions with each other. He seems to be using any negative outcomes as a way of avoiding personal responsibility. He knows how to push your buttons and I suspect he does it when he's being required to work hardest mentally.
You need to stop reacting to him the way you are. Your sending to his room etc - yes, that is appropriate. That isn't what I'm talking about. But there is something in your manner with him which he is using to distract you. None of this is conscious on either of your parts, this is something happening on a subconscious level. But it's a habit that needs breaking wherever it is found because it can set up a lifelong pattern of coping with confrontation that is unhealthy. The unhealthy pattern is two-fold - 1) using confrontation as a distraction from what you're being asked to do; a form of deflection from the real issue; and 2) being able to be distracted and deflected. Both are not good.

If you've tried sign language already and it didn't work - then I agree, skip it. And he knows the concept of abstract communication with language, so that is another hurdle he's accomplished - good. It buys you more time than you realise. From here he can take as long as he wants, to learn to talk. It's when the concept of communication is still missing at this age, that you have serious long-term problems.

I mentioned Compics - make your own if you want. You can get them fairly easily, they are stylised pictures which you can stick to card and cut out to put on a small binder or curtain ring or something, so when he wants something he flips to the right picture. Perhaps he wants a drink - he flips to the Compic for "drink" and shows it to you. You then get him a drink (you need this to reinforce and reward his effort to communicate). I made sure the Compic also had the word written on it.

But it sounds like he could be just beyond the Compic stage. besides, it increases vocabulary of nouns but not other parts of speech. For that - the social stories did the trick with us. He memorised the social stories from repeated reading together, and then began to use the sentence structure built into them (by me, who wrote them) as a pattern and pro-forma. He would take a sentence such as "In the mornings I go to school" and modify it to "In the morning I go to shops" if he decided he wanted to shop with me instead. Previously, he just would have shouted "SHOPS!" at me until I guessed what he was on about.

These are easy to do and very worth the effort. It also build your relationship with him in a positive way. You going to that sort of effort for him - he will appreciate it, later if not sooner. And sitting reading with him - that is positive attention. It's also darn good therapy for you both.

You've got your own very strong ideas here. Maybe not everybody agrees with them, but the fact that you already have such a strong feel - this is good. Use it. it is your instincts kicking in. Learn to look inside for the answers you need. use us as springboards of ideas, but take what you feel will fit, and try that first. Clearly you have reached a point where you need to think outside the square. (been there done that!) Trust yourself, have faith in yourself and try to not see him as a malevolent problem; rather, he's a frustrated kid who just gives up and coasts now and then.

I wonder what would happen if you responded to him with nonsense words? Maybe make a game of "talking in scribble" as easy child 2/difficult child 2 used to say about difficult child 3, and see how he reacts when he fails to understand what you say?

Just a thought.

Marg