A question about cherub...

Discussion in 'General Parenting' started by therese005us, Sep 10, 2009.

  1. therese005us

    therese005us New Member

    I just wondered if anyone has any ideas -

    observations - she talks in a dyslexic fashion "What I can do"; "Now I may leave?"
    I can't thnk of anymore! yet there are heaps....

    She talks like she has alzheimers - will start a sentence "Aunty Trish, .... followed by a 'mid sentence' that i'm supposed to follow (she could be remembering something that's happened through the day, and start telling me mid paragraph or chapter of the story) then stop, and she's forgotten or unable to continue... Again, saying it in a back to front dyslexic fashion...

    her last three fingers on each hand were (from birth) curled and stiff, she can't straighten them. doctors did recommend an operation, mom refused. They made her wear a splint, that didn't last long either.

    her last two toes on each foot are swayed/curled in also.

    She has a wobbly gait, runs awkwardly, falls over often because she loses her balance (in a way)

    Fine motor skills are poor, can't hold pencil correctly,

    Messy eater, doesn't hold utensils correctly, or easily, finds it awkward to get spoon to mouth? (I'm working on it) and will end up with food all over mouth and either doesn't notice, or doesn't care so will not wipe herself.

    that's a list I can think of at the moment...

    Any ideas? This doesn't all really fit with aspergers/autism

    I suspect mild cerebral palsy when I first saw her at birth....

    Mother had been smoking marjuanah, but stopped when she realised she was pregnant; also smoking nicotine, is a drinker of alcohol (don't know if or when she stopped drinking, or how soon into the pregnancy)

  2. crazymama30

    crazymama30 Active Member

    Wow. Any chance you can get her an Occupational Therapist (OT) evaluation? What about following up on surgery for the fingers? Is that still an option?
  3. Over

    Over New Member

    That really sounds like cerebral palsy to me. My 5 year old has CP, and has many of the same issues. The only one she didn't was the speech. Everything else is VERY similar.

    She has an awkward gait and falls frequently, she wears braces on her legs for stiffness. I think you should go to your primary doctor and ask to take her to a neurologist. At the neurologist they can do an MRI and see if she has any brain damage from the drug use. My daughter had extensive damage. Due to the same bio parental issues. They showed me the MRI and there were huge black patches.

    The doctor said she wouldn't walk, talk, roll over, and would be wheelchair bound, so prepare for them to tell you worst case scenario. Don't believe it. My daughter is 5 and is in regular Kindergarten with an aide. She is insanely smart, precious, and funny. We decided to let her decide what she was going to do, we gave her every opportunity for therapy. (She's even been riding horses for therapy since she was 2!)

    Hugs to you and her!
  4. Marguerite

    Marguerite Active Member

    Trish, there are a lot of possibilities and they really do need to be followed up. The Childrens Hospital in your nearest major city is perhaps going to be where you get the most help. Sorry, I know it's a hike for you.

    The fingers/toes thing could be part of an overall syndrome which also includes the other developmental things you've observed, or it could simply be one of those things totally unrelated. For example, difficult child 3 has hypermobile joints, we've also met other high-functioning autistics with similar loose joint problems. So there could be a connection. But I also have loose joints. And I'm not high-functioning autistic. Not that I know of, anyway.

    Spasticity? Certainly a possibility, but you really should have an Occupational Therapist (OT) assessment for that. Sounds like one is warranted anyway - have you got her name down at Community Health? Or can you get her a Care Plan via the GP and access Occupational Therapist (OT) services that way? If you make a special appointment with the GP (as you did for DS19) you can discuss all your concerns and work out a list of who you need to get referrals for. On your list so far - the Occupational Therapist (OT). A Speech Pathologist. A psychologist who can do a psychometric assessment. A pediatrician (already on board, I know).

    The speech patterns you describe - very much what we went through with difficult child 3. And also very typical of autism. Hhe often got things backward. It is (to a certian extent) a normal stage of language developement for all kids, but it generally happens when they're much younger and it's much more transient. You really notice it a lot more in a six year old!

    What we observed in difficult child 3's speech -
    * he would talk using his name in the third person. For example, "difficult child 3 want orange juice."

    * He regularly confused gender and personal pronouns, still at 15 has some difficulty in working out who is male and who is female. But at 5 and 6 he would often say, "Mrs Smith is a nice man." And "Jack lost her pen." We went out yesterday with friends, including three boys whose mother has never cut teir hair. difficult child 3 knows these boys well, he knows they are boys and has been told so repeatedly (by te boys as well as by their mother). But I overheard him yesterday asking, "You ARE all boys, aren't you?" so he STILL wasn't sure. And he kept referring to the toddler as "she" even though he's been told the toddler is a boy. They are all dressed as boys, definitely. It's the long hair (mostly in a braid) that keeps causing him confusion.

    * The odd word order in speech - again, this is a natural stage of language development, but it's happening at a much later age than is normal. Again, we went through this too.

    How we handled all of the above - we would say what he was trying to say, but say it the right way and encourage him to repeat it after us. We also put it in writing and would read it aloud to him in a story with photos of him doing things describedd in the story. We used correct grammar and the right word order in our writing and each time we read it aloud to him, it helped him lock it in(in terms of te rigt way to say it). It took longer for him to lelarn to "mix and match" his sentences, to make them adaptable.

    The Alzheimer's thing - this was described to us (by the Speech Pathologist) as an attention deficit issue. The problem is complex - first, the child is trying to say something but hasn't planned it out first. So they get partway and lose the thread. They also lose attention for teir own words in draft. For difficult child 1, he can't mentally visualise more than one step at a time, so trying to remember conversagtional sequences is hard for him; trying to do it and 'hold that thought' while still paying attention to what someone else is saying - almost impossible for him.

    Next stage of the problem - when trying to respond to what someone else has said (or asked tem) they often only pick up a fragment of it. Then they have to marshall their thoughts to answer, hold all this information mentally, arrange it, makesense of it - and often as they try to arrange it, that is when their inattentive little mind loses its grip on it.

    So they adapt, and the most effective way they can find to communicate (when younger, especially) is to simply say what they CAN recall and what they CAN manage, and hope somewhere along the line YOU will be able to join the dots for tem.

    We used to describe it with difficult child 1, as a poor short-term memory. He would ask fordirections to the toilet, in a stranger's house (where we were visiting) and when the hostess said, "Go to the hall door, turn right, go douwn the hall and it's the third door on the left," difficult child 1 would get to the hall door and be lost. He knew left and right, but he had forgotten the next step in the sequence. But once he had been escorted there, he would have no trouble finding his way tere again. Because language was not involved in navigating a route he had already seen in a sequence. The sequence seen was locked in as one thought. But a set of directions (like a string of words) are each composed of different steps, and only the first step (or sometimes the last one) would get through the inattention barrier.

    Calling it inattention also can mislead parents. Inattention in a medical sense, is a long way from a teacher yelling at a kid for being inattentive. Here, we're talking about a brain that simply doesn't get the message because there is too much else going on for the information to 'stick'. The child CAN do it sometimes, but at the expense of other information getting in. difficult child 1 could focus very intently on a topic, but only if he narrowed his sensory input down a very long way. And that took time for him to learn how to do. So eventually he would be able to look at something in detail, but while looking at it and in order to do so effectively, he would not take in any other sensory information. You could call him and he wouldn't hear you. I had to go to him and shake him gently to let him know I needed his attention. He was 18 and was studying for his final school exams when he said to me (after emerging from a study session)" When I'm concentrating hard the silence in my head is so loud it's distracting me."

    Trish, you said, "Any ideas? This doesn't all really fit with aspergers/autism"

    But from what I see - it does. The messy feeding - could be sensory integration issues (which we know she has). difficult child 1 was notorious in our family for his messy eating. I would have to change his clothes after every meal. Often change te table cloth as well. Poor motor control, clumsiness, awkward gait - definitely fits with autism. difficult child 3's tennis coach calls it his ballet style. She was trying to correct his stance and gait in today's practice. He actually does have very good ball skills, but it doesn't look it when he is slow to react to the ball or he misplays it. Basically, his eye can see what to do but his body is often slow to react, especially as his attention wanes (because his medications have worn off).

    Even the delayed language stuff improved, when difficult child 3's attention improved. It was really dramatic - within a week of his first beginning ADHD medications there were obvious major improvements. And you can get ADHD with autism, mixed in together. Increasingly people are saying that ADHD is also part of the autism spectrum.

    Trish, get her to a good Speech Pathologist, talk to them about her current pattern (it is vital it is documented NOW) and then find out what strategies they can suggest that will actually help her.

    For difficult child 3, there was a branch of DOCS that were at first trying to help him (oh yes, get her hearing checked out too -that can cause language delays). For us, DOCS tested difficult child 3's hearing but wouldn't continue because they said he was obviously highly intelligent and they were only permitted to work with kids who were likely to test as developmentally delayed. The reasons they said he was obviously intelligent - he was reading at age 3, also reading sheet music and playing piano. But still not talking properly.

    With multidisciplinary evaluation, they may find that there is a known syndrome with a name which explains absolutely everything about cherub. But until then - autism is a good working hypothesis, because apart from the webbed fingers/toes, she is following very similar patterns to difficult child 3. And if she can turn out as well as he has been doing, then you have cause for hope.

    Last edited: Sep 11, 2009
  5. JJJ

    JJJ Active Member

    I agree, a full multi-disciplinary evaluation is in order.

    Her speech sounds like Kanga's. Have you had her tested for Auditory Processing Disorder (basically hearing dyslexia). There is a good book "Like Sound Through Water" about raising a child with Auditory Processing Disorders (APD).
  6. TerryJ2

    TerryJ2 Well-Known Member

    You've gotten some great ideas here. Just wanted to lend support.
  7. Christy

    Christy New Member

    Has she been tested for Fragile X syndrome?

    Seeing a specialist like a developmental pediatrician at a Children's' Hospital would be a good start.

    Do you have the medical rights over her? Are you able to take her for evaluations and treatment? If not I would contact a social worker and say that there is medical neglect on birth mom's part by refusing to have her evaluated.
  8. therese005us

    therese005us New Member

    He would ask fordirections to the toilet, in a stranger's house (where we were visiting) and when the hostess said, "Go to the hall door, turn right, go douwn the hall and it's the third door on the left," difficult child 1 would get to the hall door and be lost. He knew left and right, but he had forgotten the next step in the sequence.

    Yes, you're right! DD19 had this problem too, and still does. ADHD would fit here.... And yet, she can describe perfectly directions from the classroom to the library!

    I am going to ask for those referrals you suggested. We've already had the first appointment with the psychologist (who is extremely concerned at her complex problems and lack of DoCHs action!)

    hearing? I think she's been tested, but it wouldn't hurt to do it again. I think it's selective!

    Fragile X? I don't even know what that is, but I'll look it up.

    More later. Have a good weekend everyone.
  9. JJJ

    JJJ Active Member

    Auditory Processing Disorders (APD) is not a hearing loss, it is a brain functioning issue.
  10. GoingNorth

    GoingNorth Crazy Cat Lady

    At this point, given the bone and tendon malformations in the fingers and toes, start to wonder about some sort of genetic abnormality.

    Fragile X is nearly always accompanied by a specific facial and ear shape.

    The blood tests for that can be done easily. Meanwhile, I'd say that having this child seen by a geneticist on a "rule out" basis would be a very good idea.
  11. susiestar

    susiestar Roll With It

    Sounds a lot like she will have more than her fair share to handle in this life. WOW! I bet those aids at school who want her to read the directions to handle the potty business are really confusing her! Poor kid. Who wants that kind of trouble, and to feel the disgust many adults would send her way but not know why. Makes me want to smack them. And her mom for not doing all she could to prevent, and to treat these problems.

    I am amazed that the mother has any parental rights at all. Not really, I guess. Just saddened. I would venture a guess that the mom did NOT stop using everything, and probably didn't even report the worst of what substances she abused.

    It sounds like she NEEDS to get seen at Childrens. Maybe if you are very far away the hospital can schedule a variety of appointments over 2 days and you can stay overnight nearby.

    I couldn't even hazard a guess, other than to say that maybe she is constructing her sentences that way because she hears people say "Now you may leave the table." and "Now you can do maths" So she asks "Now I may leave the table?" and says "Now I can do what?"

    Wiz had a child who spoke that way in his first grade/gifted year (most kids first grade). I never new what the underlying cause was.
  12. therese005us

    therese005us New Member

    I just looked up Fragile X!
    Those people must have been in my house! It all fits like a glove (haven't checked the palm of her hand yet though). I'm going to ask the Paediatrician on Monday about doing a test; then persuade Mom to get the other two tested as well. Chances are......

    going through all the symptoms was amazing, even the heart thing....she had heart surgery as a baby...

    The most distressing though is this:

    Toilet training
    Toilet training with most children is a challenging task, and with children who have fragile X syndrome, it can be a long and frustrating experience. Many children with fragile X, especially boys, are delayed in their toilet training, due to their overall developmental level. Some also seem to have a poor sense of their bodily cues. Bowel training seems to be especially difficult for some children. Hypotonal muscle problems may cause an immature sphincter muscle, which affects bowel control. The child may not sense that he needs to have a bowel movement until it is too late. Poor eating habits may contribute to loose stools, or to constipation, which exacerbate the bowel problem further

    If this is true, then this poor little cherub has been enduring medication and discomfort which possibly has increased the problem.... and her stress levels...... OH My!
    Last edited: Sep 12, 2009
  13. Marguerite

    Marguerite Active Member

    "And yet, she can describe perfectly directions from the classroom to the library!"

    Thething is, in her mind she can visualise the walk from the classroom to the library, so it's a matter of simply verbalising the sequence. it's the other way, if you get me.

    As for Fragile X - by all means check it out, we thought it was us too (because autism doesn't just run in our family, it gallops). But the tests were negative.

    The test requires a blood draw, so I would suggest you hold off on it until a blood draw is needed for other purposes. Unless the test has improved and they only need a cheek swap now.

    A diagnosis of Fragile X won't really change her problems, it just helps explain why a bit more. You still have to find ways to help her adapt. Same goes for the others.

    Maybe get DS19 tested first (he may need a blood draw anyway for other reasons). He IS related to cherub, isn't he?

    Trish, see if you can organise appointments at the major state hospital Kids. You should be able to also check in to Ronald McDonald House for a day or so, while they test everything.

  14. TerryJ2

    TerryJ2 Well-Known Member

    Therese, try not to upset yourself with-what-ifs. Just use the info as a tool, so you can help your kids. {{hugs}}
  15. heysharon

    heysharon New Member

    Hi Therese,

    I registered on this site just so I could respond to your inquiry. I came here looking for help for my 6 year old daughter, who keeps us hopping with her explosive behavior issues. Both my daughters were adopted, both were exposed to alcohol in utero. The physical anomalies you describe in your daughter, such as the curved finger/toes (the clinical term is Clinodactyly) and the fine and gross motor problems, are classic features of Fetal Alcohol Spectrum Disorder. Since you know the birthmom was smoking marijuana and has been a heavy drinker in the past, this puts your Cherub at a very high risk for alcohol exposure during gestation. Very rarely does a woman use an illicit drug during pregnancy without also using cheap and legal alcohol, which you probably already know is more dangerous than most street drugs to an unborn fetus. This website has great photos and descriptions of physical characteristics of fetal alcohol exposure. Many doctors are reluctant to diagnose FASD, because of social stigma when children are parented by the drinking parent, and because the damage is permanent. But there are definitely strategies to help with parenting and education. Obtaining a diagnosis has been HUGELY helpful to our family. My heartfelt best wishes to you and your family. Please feel free to write me privately.

    Sharon in MD
  16. susiestar

    susiestar Roll With It

    MWM, Cherub is a foster child. That is why she must talk to mom about it. Mom might actually have it.

    Before you decide she has it, get the testing done. I think this is too important to wait until blood work is needed for other things. I would want to know now so I could figure out what will best help her. Just in my opinion.
  17. therese005us

    therese005us New Member

    Just to let you know...I talked to bio mum about the Fragile X and she's fine about me getting the test done. In fact, she's going to get her medical practititoiner to test the other two as well!

    Took cherub to the paediatrician today. She was over an hour late seeing us! Cherub was upset because mom didn't turn up for the appointment. She spent the money for transport on a bird and other stuff at the Sunday markets (i didn't tell cherub that though) so couldn't come.

    Showed paed. the IEP, she is very skeptical. She says the Teachers are being rather optomistic, given Cherub's intellectual disability (My thoughts exactly) and it probably won't work. I was able to tell her, it isn't working. Although cherub was enthusiastic abotu the games to play on the toilet, the watch that tells her when to go, that was a week ago. It's old now, and she's very VERY oppositional about going to the bathroom.

    She is NOT capable of being independent to take herself, sort herself, clean etc. I've tried it, as asked by the school, but it doesn't work. She ends up being in a dirty state for longer.

    I talked to the paed. about the Fragile X, and she was skeptical. She doesn't want to order the test till she's been through the file to see what else she's been tested for in the past.

    Wait till next appointment, she says. But that's in November, I think I can talk our local doctor into getting the test done before then.

    Urologist appointment next week, just to eliminate everything. Gastroenterolgoist appointment (waiting for date).

    Dr doesn't know why cherub is also not contintent of urine sinc emother hasn't reported thata before. I wanted to say, she probably didn't notice, or care... but didn't. Just expressed surprise.

    Well, that's all for now about cherub.

    Thanks to all who've replied. I wanted to Personally reply to that last post, but don't know how. So, plesae could someone tell me how?

    I'm making another psychologist appointment for cherub asap.

    Bio mom rang all excited because boyfriend is coming back tomorrow. Could I have the other two please? She is at least wise enough not to have them in the house (cos she knows she'll be in trouble) but if I just happen to mention his return to the right person........