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.
Marg
