Well, I was right and I wish I hadn't been

[BusynMember]

When my little grandson was born, I noticed that he wouldn't make eye contact when he was held. He was very young...weeks old...but I remembered my own kids staring at me in my arms. Or trying to look into my face. Intently. Grandson would look around the room, but not at me. Alarmed, I mentioned this to my daughter, who was his babysitter at the time, and told her to see if he made eye contact with her. She hadn't been paying attention to that.

Unfortunately, my daughter told my daughter-in-law that I was worried about autism. She hadn't told my daughter-in-law in a vicious way. It was more like, "Mom is worrying again" and she had no idea that daughter in law would go ballistic, call me, and get so abusive and mean that I almost ended up in the hospital for the first time in fifteen years. It wasn't that I cared about daughter in law's crazy reaction. It was because she had told me that my son had given her permission to yell at me and that if I ever did that again I'd never see my grandchild again. Things have been tense between us since then and son told me he never gave her permission to do that. He said, "How could I stop her?" They are verging on divorce now and she is being extremely abusive to my son, but the story here is about my grandson who I always call George on this forum.

George will interact with people and show things to people and laugh and scream and make silly noises. But George is "different." George does not speak AT ALL. He is 16 months (just starting walking last month and is still unsteady). He doesn't say one word. He says "dada" but my son swears he doesn't connect "dada" to him. He doesn't say "Mama" at all. (Haha, daughter in law). And he totally freaks in groups of people he doesn't know. My son reports that he sometimes calld George, and George doesn't respond to his name. George's hearing is ok. He never gets ear infections either.

A few weeks ago, even daughter in law noticed George's, as son calls it, delays. They had somebody (I don't know who) assess George. He qualified for early services in speech, and daughter in law just freaked out. Son said she was wailing and crying and couldn't accept it and finally said she wasn't going to send him because he'll be ok. Son can't take him alone, without her permission. So he isn't getting any services.

I'm not 100% sure he is on the autism spectrum, but I have an eerie feeling that he has Pervasive Developmental Disorder (PDD)-not otherwise specified. He is not so bad that he doesn't try to communicate. He does try. But he is not your average kid and he reminds me so much of my Pervasive Developmental Disorder (PDD)-not otherwise specified child L. Fortunately, right now he does not rage or tantrum. He just tends to freak out in crowds, not ride well in the car, he doesn't really play with toys (more picks them up, looks at them, then drops them) and can't communicate with even a word. Yet he CAN blow a kiss and I think he waves bye-bye.

daughter in law is not the brightest bulb on the chandeleir. daughter in law's mother has a drinking problem and has a breathalyzer in her car yet daughter in law insists her mother isn't an alcoholic--that she just drinks when she goes out to have a good time. Um, yup. daughter in law doesn't really read much or talk much to George or spent one-one time with him. She drags him around to play with his cousins while she talks to her sister (this is her favorite activity) and George really needs somebody to work with him. Visiting his older cousins isn't helping him.

It's a mess. I feel badly about George,but since I don't think of Pervasive Developmental Disorder (PDD)-not otherwise specified as the end of the world I just wish he'd get some services. That way, if I"m wrong and he doesn't have it, he's at least getting help for his speech. There is no doubt that this child has delays and differences.

The ironic and sad thing is that I was probably right from Day One.

This is sort of just a vent. If anyone can offer alternatives to what it may be other than Pervasive Developmental Disorder (PDD)-not otherwise specified, I'm up for hearing it. He does NOT behave like a child with just ADHD. I would say that's definitely not the issue.

Thanks for reading my frustrating. There is nothing I can do.

 

[gcvmom]

I'm so sorry. It's got to be VERY frustrating to be on the outside and know that something needs to be done but not have much power to help. Sounds like your son has probably made a good decision with the divorce situation. She's in denial... probably too much to pile on her plate with her marriage falling apart. And the poor little guy is the one who suffers.

 

[1905]

I'm so sorry about your grandson. I think he may be on the autism spectrum. Autistic kids don't play with toys, not the way a "normal" kid does, anyway. There isn't really a set norm, because every kid on the spectrum is so different even with the diagnosis of autism. See if your son can ask the pediatrician for names of doctors who are specialists and can diagnose the problem. He doesn't need her permission for that. There has to be a way that he can get his child help without her permission, what do single mothers do without a dad in the picture do in that situation? Early intervention can make such a difference, I'm sorry for your son.

 

[pepperidge]

Don't know about the diagnosis, but my Fetal Alcohol Syndrome (FAS) son didn't smile for quite some months, definitely wasn't speaking at all at 16 mo, qualified for speech services, and didn't really start speaking until about 3 years. He's of average intelligence, definitely not autistic. So maybe there are other factors at work. He was a pretty sociable guy though.

Sorry for all the pain you are in with son and daughter in law and your grandson.

 

[susiestar]

I am sure you are probably right. But things can and do work out. It would be MuCH better if daughter in law talked to him and interacted with him. It really sounds like she doesn't know how to be a mom on the interactive part. She loves him, takes care of his physical needs, but doesn't get that he needs other things. in my opinion SHE may have some Pervasive Developmental Disorder (PDD) leanings. It almost seems like she is just doing what her sister does, looking to her sister to see how a married woman acts. Thus when her sister divorced she needed a divorce too.

Does that make sense? It just seems that maybe she doesn't quite "get" the social cues and maybe doesn't have a pool of friends to model her behavior after. So she acts the way her sister does (may be intensely frustrating to her sister).

I do want you to remember that kids with problems did grow up and find ways to succeed even before interventions happened. My dad is clearly an aspie. He grew up with a lot of cousins who wrote off his strange things as 'just him'. he was a very successful teacher with decades of students who still come and find him to say thanks.

My husband has a sister about a year younger than he is. He did not talk or make many sounds until SHE started to talk. Her first words were at about 9 months old, according to the baby books. HIS first words were about a month later - when she was 10 months old and he was 24 months old. Once he started speaking there were no problems that anyone at the time would have treated. He has a very full vocabulary, and loves to read and write now.

So this isn't "the end" for george. He will take the world at his own pace. Just be there however you can.

 

[Marguerite]

I know you find secret amusement (and perhaps significance?) in George saying dada and not mama, but I rememberreading decades ago in a Dr Spock book, that babies' first words are 'dada' rather than 'mama' because 'mama' requires sound from the front of the mouth and the lips, and babies' speech tends to develop from the back of the throat and forwards. Actually, if you had the chance to say this to daughter in law as part of reassuring her that it's not personal from George, could it soften her attitude a bit?

Although daughter in law does sound to be a problem, over-controlling and hypersensitive. Such people can get VERY annoyed when the rest of the world insists on not doing what he/she tells it to.

difficult child 3 didn't respond to his own name either, not until he was past 2 years old.

daughter in law sounds like she's grown up becoming an expert in denial. Very sad. This won't change.

All I can suggest is that your son work with George as much as he can. Therapy would be good, but frankly, your son can do a great deal just by doing the right things under the "dad" umbrella.

What George needs (based on what we were taught to do for difficult child 3 under the guise of "therapy" at the same age) - he needs someone to play with him in an age-appropriate way. WHat I'm describing here is the play therapy we were given as a group of mothers, whose sons had langage delay 9all for very different reasons). We had to sit on the floor with our kids and play with them. let the child choose what is being played with. In our case, difficult child 3 chose a Lego farm. He would pick up a piece of fence, I would say, "fence". (I was supposed to keep my contribution to two-three word sentences, no more. But I found that difficult child 3 really resented this, as if he felt it was demeaning or condescending. I had to use longer sentences, but I made a point of speaknig slowly and keeping it as simple, but natural, as possible).
difficult child 3 would pick up a cow and I would say, "Where does cow belong?"
Whatever difficult child 3 did, I would describe. Simply. I did not correct and say, "Cow does not go on barn roof." No, if that is where difficult child 3 sat the cow, I just said, "Cow is on barn roof."

What also helped A LOT was puzzles. We had a shapes ball, the kind you post different geometric shapes into. I did this with ALL my kids, but I realise now that what this did to difficult child 3 was teach him the repetitive and predictable nature of symbology. A square is alwaysa square, it is never a triangle. And once he understood that, it was easier for him to recognise the existence of symbology in other aspects of communication.

A big problem with language delay especially in autism (and related conditions) is when they simply don't recognise that a specific set of phonemes (or arrangement of letters) represents an object.

So to get around tat - keep workingon him, but not too much. Always some level of challenge, but ease it to what he can accept and handle.

Puzzles as I said are great. Get a shapes ball (if he likes it) and give him as much help as he needs, to post the shapes into the right place. Announce the name of the shape, then say the same word when he finds the correct hole to match.
Next step - make books for him, with the same shapes and also their names written in lower case careful printing. Then your son must READ this book to George.

Read other books to George, but especially write books about George and include photos of him. Your daughter in law should be OK with this especially if the stories are factual, are happy and include her in the story somewhere important (as they should - she IS his mother).
Example - "My name is George. I live with Mommy and Daddy. THis is Mommy [put in photo here]. This is Daddy [put in photo here]. We also have a dog. His name is ???? [put in dog's photo here]. I like to go for walks with Mommy or with Daddy. We sometimves visit Aunty ???. I play with [cousins' names]."

Use a large font and put in lots of photos with George prominently in every photo.
Displey this in one of those old hard-paged photo albums (the ones with the peel-off clear sheet, you place everything under the sheet and roll it back carefully to hold everything in place). This makes it easy for him to 'read' it.

What you aim for - the more it is read to him, the more he hears these sentences fluently said to him, but IN CONNECTION WITH THE PHOTOS OF HIM. These kids aqre intensely egocentric, so the photos of him are vital to hook in his personal involvement. It gives him an investment in the contents of the book.

This is just a start. There is a lot more. Read other books to him. Act them out. Make an absolute fool of yourselves reading aloud to him. My sister read aloud to her kids from infancy - in the hospital with her baby a few hours old, she was reading aloud to him.

Take lots of photos of him. Take photos of his daily routine - eating breakfast, getting dressed, going for a walk, eatlnig lunch, playing with his toys, eating dinner, having his bath, cleaning his teeth, going to bed. Photos of him asleep. Then use these photos to write illustrated stories about his daily life.

Therapy would be wonderful. But what I'm suggesting is almost as good. A lot of it is what a therpaist would suggest anyway. And where therapy isn't happening (for whatever reason) then this is a great way to go.

It'swhat we did. For many rasons, we didn't get much in the way of useful or ongoing therapy (or even assessments) for difficult child 3. Early assessments (when he was 3 and 4) were very pessimistic. His language delay at 4 was bad enough to have him fail his first IQ test - he simply hadn't understood the questions or even that he was being tested. The experts then told us that he had a very poor prognosis, would never attend a 'normal' school and would need close and ongoing support and supervision all his life. he would never be able to function independently.

And look at him now! We got him there mostly without therapy, simply because nothing was really available. While therapy is good to have, you shouldn't let the grass grow under your feet or wring your hands, because therapy isn't possible at the moment. Instead - do your own therapy. It IS possible, chances are you will be better able to fine-tune it simply because YOU know the child better than a therapist coming in cold.

Stimulate what needs stimulating, and do it yourselves until you can get the outside help you want. But never underestimate the power of a committed parent.

Marg

 

[Christy]

So sorry that you were bore the brunt of daughter in law's anger and that she is in such denial over a possible Autism Spectrum Disorders (ASD) or other diagnosis. Given all we know about the benefits of early interventions, it's a shame that she wants to hide her head in the sand rather that seek additional evaluations. I hope she will have a change in heart, get over her anger, and turn to you for support and guidance as someone who has had experience with what she may be facing.

Hopefully your son will step in and advocate for little George as well.
Christy

 

[BusynMember]

Thanks, all. There is nothing I can do. When anyone attempts to talk to George differently or tries to help him, daughter in law goes nuts. I just wrote to vent. After all this shakes out, hopefully son can try to get him help but right now he's sort of afraid of her on every level. It's frustrating to me, but it's also none of my business. George won't get help until he's in school and the teachers insist. By then, hopefully, the divorce will be done and our family can at least help George when he's with son. I've already told him to take George to a Developmental Pediatrician because it's pretty obvious that he is delayed. But he won't do that as long as M. is around controlling everything about George, insisting he will be fine. Right now I do understand son's fear of her. The mouth is vicious and constant. If M. tries to get George to watch him or talks to him slowly, M. jumps in and mimics him and tells him that he's talking "stupid" to George. She doesn't even let him feed George without barging in and ridiculing what he's feeding him. It's really bad and my son is putting up with it. I just wish he'd step up and calmly tell her he's serving her divorce papers. I don't know why she hasn't left other than she likes the money he makes. But I can't do anything about that either.

All of this is really out of my hands.

 

[ML]

You know what, I came on this board a few years before I had a diagnosis. I came on for a short time as "OldMom" and asked for help. You were the first person EVER to suggest a spectrum diagnosis and I remember getting pretty upset too lol. Gosh I guess manster was maybe 5 or 6 at the time. It was a couple years after that I came back and knew you were right. While I was upset then, I thank you now because it was your words that prompted me to educate myself more on PDDs.

ML

 

[BusynMember]

Oh, ML, how kind of you...I think .

What people don't realize is that Pervasive Developmental Disorder (PDD) is NOT the end of the world. I'm not upset that George probably has it. I know how well the kids can do because of my sixteen year old. I care that M. is ignoring even the advice of experts. Hey, you came to this board and I'm just a layperson with an opinion. But she's hearing this from professionals and still ignoring it.

There is nothing I can do about M. or my timid son (see his history, he's the first one). He has such bad anxiety and such a bad social phobia that I believe he could be borderline Aspergers, although his social skills are adequate (not good, but adequate) when he forces himself to appy them, like at work. So I'm hardly shocked that this grandchild has been born with problems.

In M's family there is depression and substance abuse. On my side of the family, there are all sorts of weird neurological and psychiatric disorders. I just hope George gets help before he's much older. But being a grandma only that M. doesn't like and who lives a state away...nothing I can do but vent.

I'm glad your son has been helped

 

[susiestar]

Go ahead and vent. With the distance and your son's timidity, there is no hope that George will get help and I know that must drive you absolutely insane!

While we make suggestions, knowing he is out of state and your son REFUSES to stand up for his child (which would make ME angry at a child of mine acting like that), we know you need to vent.

I do advise that you use the serenity prayer and do what you can to detach. Otherwise YOU will go nuts.

 

[BusynMember]

Susie, you are always so sweet.

Actually, I'm not as upset as I'd be if I lived nearby and had to watch it. Because I have two kids at home that I *can* help, I do detach. There is zilch I can do about M. If one doesn't realize her own mother, who has had several DUI's and needs a breahalyzer in her car, doesn't have a drinking problem (and she doesn't believe she has one) there is really no hope that she'll believe her son is on the autism spectrum. He's not so bad that a dense person couldn't miss it.

I can tell because of my experience with my Pervasive Developmental Disorder (PDD)-not otherwise specified/Aspie son and my long standing belief that her husband (my son) is on the cusp of Aspergers. I can't begin to explain to anyone here how shy and socially inept my son is. That's partly why he's so timid and afraid that if M. leaves he'll be alone forever. It's rather sad, but he's 30 and I can't do anything about it. All of his therapists have called it a "social phobia" and "severe anxiety and panic disorder" and Obsessive Compulsive Disorder (OCD). And he worships his current psychologist, even though he hasn't taught him any social skills. I can't say a word against the man and I don't. But I think he's missing the boat, although I could be the one who is wrong.

I have high hopes that the school will insist that George get help once he goes there and that peer pressure will also make daughter in law see the light. Other moms can tell, I"m sure, that George is delayed. But, if not, I raised five kids and it was not easy...my children were hard. I have no desire to be a parent again or to worry as a parent again, even about my grandson.

I have no control over George and it's pointless to talk to either M. or my son. Thanks for offering the chance to vent here. This is the only place I feel anyone would "get it." Out in the big, bad world, most people don't even know what Aspergers or Pervasive Developmental Disorder (PDD)-not otherwise specified is. Hey, I hope it's just a delay. Whatever it is, yes, the Serenity Prayer is all I can do.

 

[Marguerite]

What people don't realize is that Pervasive Developmental Disorder (PDD) is NOT the end of the world

You are so right!

I was devastated when I was first told of difficult child 3's diagnosis and his poor prognosis. I set about trying to prove their first prediction wrong - that he would never attend a mainstream school, and would certainly not be ready for ANY school within a year. A year later he started in mainstream.

Thing is, I had to do it with very little professional help. difficult child 3 was on ADHD medications plus we got a TINY amount of not-very-useful speech therapy. The first speech therapist told me to NOT let him read - I said, "How do I stop him?"
My instincts were, let him read, because it is his first communication, for us it was the key to him finally learning to talk.

ML, I don't know if it was you back then, but I do remember trying to tell a 'newbie' whose child (to me) obviously needed to be assessed to check out for Pervasive Developmental Disorder (PDD), to "change mindset". I got a flaming response because I got completely misiinterpreted. But if it was you, I think you know now what I meant. Part of the "change in mindset" is to NOT see Pervasive Developmental Disorder (PDD) as major handicap but to look for the positives and find the way the child thinks, and work from there. Because while we either use denial, or wring our hands and wail, we're not helping our child. And in helping our child and changing how we see him/her, we're suddenly feeling a lot happier about it ourselves. Because to DO something, is to reduce your own stress levels and to feel there is some chance of a good outcome (or a less disastrous one) after all.

I look at people like Temple Grandin and even Kim Peek, and think - "my child could also be feeling happy and fulfilled, if I find the key."

I've had to often do what therapists told me not to do, if my mother-instinct was screaming at me to do this.

MWM, I'm sorry your daughter in law is so difficult. If your son can't currently do any of the things I suggest in any way - that is a great pity. But show him my suggested program, for the time when he CAN begin to do something. Surely a book like I suggested would be a loving thing to do? It needn't scream "Disability!" in any way. In fact, it's indicating an expectation that George could be learning to read any time soon. He can also do something like this for other children in the family, including cousins of George. That way it wouldn't look like he's singling out his own son for special attention (although what father wouldn't?)

Keep my list there, let him think about it and add his own parent instinct to it so he can develop his own plan. There MUST be times when he can interact with George, even if it's just reading Cat in the Hat to him. ANY book reading is valuable language-based interaction. Don't let him do anything to upset daughter in law, but work within those parameters. ANYTHING is good therapy at this stage. Whatever can be done, you pat yourself o nthe back for and try to not stress the rest. Meanwhile George will find what he wants and that also can give clues, to ways through to reach him and help him.

Even simple observation and diarising, can be invaluable later on.

Marg

 

[BusynMember]

Marg, I will. But you have to understand like many undiganosed Aspies, while he is brilliant and gets academia really well, he misses the big picture a lot. If I told you his history, such as how he could identify the entire alphabet and numbers to 100 by 18 months old and learned how to count in Spanish at that time too, you'd say "Ah, Aspie." lol. He had no delays. He seemed brilliant. He has an IQ over 130 and school work was never a problem for him. But he always had obsessions and bad social skills. They are better than most on the spectrum, which is why I'm not really sure he has Aspergers, but he's got something and it's combined with a serious mood disorder too.

He is not going to speak up against his loud wife. He really doesn't know how. And I'm not going to do it. It's none of my business, and he'd be really mad (justifiably) if I turned up the heat and made things worse. Once the marriage ends, I'm sure son will do something. He is eager to help his son, but lacks the ability to go against his wife.

 

[TerryJ2]

MWM, I just want to lend support and say I'm very sorry that your daughter in law is in such denial. I like Marg's idea just to work with-your grandson as much as you can whenever you and your son are with him, which may be after the divorce is final.
How heartbreaking.

 

[BusynMember]

Thanks, Terry.
You have such a good heart . Your comfort hit the spot.

 

[DammitJanet]

It is just terribly odd that he cant feed the boy or read to him without being mocked.

Reminds me of how I wanted to reach over and strangle my daughter in law when she mocked Tony and Jamie for singing a country song together in the back seat of their car when we were up there at Xmas. Now what was so idiotic about this is that they can both sing quite well. It sounded lovely. She cant carry a tune in a paper bag. Even when she talks she is off tune!

 

[BusynMember]

I'm not in Illinois. If I was, I would probably lose it and tell her some hard truths about herself and her denial and other things as well.

I'm glad I don't have access to her right now!

 

[Marguerite]

MWM, I think you beat yourself up too much over what you said to your daughter and she passed on to daughter in law with disastrous consequences - she sounds like she would be just as difficult with you even if you had said nothing. This was always going to go bad. You just happened to hand her an excuse. If it hadn't been your innocent remark, it would have been another innnocent remark.

I want to say to all of you - therapy is great, if you can get it. But if you can't, such a child can STILL be helped, surreptitiously if necessary, simply by doing what you would do for any child. Stimulation. Giving the child what he/she seems to crave. Sitting beside the child and interacting on the child's level. Acting as if you believe the child can do anything. Read the child a book on quantum physics if you wish - what is working here, is the interaction even if there is no understanding, at least to begin with.

Tell your son to love his child and be with him as much as he is permitted. Reading aloud to him (anything at all) and reading with as much expression as he can get away with, would probably benefit them both. Read the newspaper, even.

I have been having a series of interviews from a TV reporter (he rang me again today, flattened the battery on my mobile phone) who wants to do a story on the lack of services we've had all through raising difficult child 3. That is what has made me really realise, especially today - we really have had very little. We've coped in isolation with minimal services and half-time aides at school who had nothing but compassion to work with. We were working blind the whole time, reacting rather than being able to be proactive. There is so much more I wish we could do - but when I look back to the beginning, we have achieved amazing things. Without that help.

Who knows how we would have gone if we'd had access to decent therapy on a regular basis? Would things be significantly better? I don't know. But it makes me realise - my parental instincts have been at least as effective, if not vastly more so, than all the therapy we've had, combined.

I know George's current situation is a therapy limbo, it risks having him lose valuable devleopment time at a very important period in his early development. That is bad - but if there's nothing that can be done to intervene, I don't know what more you could do. However, there are little, subtle things that can be done within the parameters of normal parenting, that shouldn't come in for criticism or suspicion from his mother.

What I'm saying - there is hope. Probably a lot more of it than you give yourselves credit for.

I remember reading (years ago) that research showed that the best prognosis for kids with Downs Syndrome was to stimulate them as much as possible. Where we normally surround a newborn baby with pastels and soft textures, a Downs baby needed to be constantly stimulated by bright primary colours in the nursery, access to different textures, different experiences constantly, lots of noise (different noises too) - as much variation and stimulation as possible. You can do this to any child and get good results.

My older three kids were placed in long day care centres from 12 weeks old. I had no choice but to go back to work full-time. At the time I felt awful about it and also copped a lot of criticism from people who felt a mother should stay home with her babies. But especially given the ultimate diagnosis of two of those three, I am so glad I went back to work. The environment of the child care centres was highly stimulating and when those kids finally started school they were well-equipped to cope and as socially adapted as each of them could possibly be. Even difficult child 1, with his Asperger's, had definitely benefitted socially.

difficult child 3 was also in childcare, but not full time and not such long hours. Again, I think it helped him a lot, in ways we couldn't have known at the time.

Looking back - difficult child 3 was stimulated a lot more than the average baby. Even at home we gave him access to the piano, to the computer, to educational programs on TV and frankly to anything he showed an interest in.

Stimulation. He could choose to take what he could handle and leave the rest. I observed what he gravitated to and gave him more of it. When he seemed to be avoiding things he needed some exposure to, I forced it as much as he could tolerate.

MWM, cast your own mind back to the things that have helped your Pervasive Developmental Disorder (PDD) kids. Is this sort of stimulation a factor?

Marg

 

[BusynMember]

Marg, Yes and no. I have to give a lot of kudos for L's progress to his therapy, which he started as an infant. He wouldn't sit long enough to be read to. However, we made sure he was surrounded by stimulation.

Unfortunately daughter in law is dense. One night she had left her computer chat room page open and she was talking in a forum to other mothers. My son snuck and read it. She had asked the other mother "When should I read George his bedtime story?"

She never reads to George except once at night. She doesn't talk to him much because she is always with her sister and the kids go off by themselves.

I just have to wait and see.