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Topic ClosedHelp Breaking the code of my son’s needs

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Radiance7 View Drop Down

Joined: 28/Apr/2011
Location: United States
Status: Offline
Points: 4
Direct Link To This Post Topic: Help Breaking the code of my son’s needs
    Posted: 25/May/2011 at 12:19pm

I think I fixed it, can someone please delete my first entry?

Breaking the code of my son's needs

I believe strongly that diagnoses are a poor attempt to put a name, a set of knowledge and a sensible healing solution to a health challenge.

I have seen people with Diabetes being treated with medicines and monitors, I have seen diabetic people treated with relaxation and diet alone, no drugs and I have read of people healing their diabetes with therapy alone.

We just don't know enough of the human body and mind (or the connection among both) to dare to put a name to any "condition". Of course when a child with autism gets to function normally with autism treatments, this is a good thing!

I know personally two guys, friends of  mine that didn't learn they had dyslexia until they were adults and had graduated form "regular" school, for one of them, his mom knew but never told him or let him feel as a child with a disability. That's tough love!

I also strongly believe that each family is different and that nobody can tell, specially a mother, what is best for their kid.

My son is a late talker, and have gotten 3 separate evaluations with 3 different responses:

1) Public schools says he is autistic and belong on a ese program

2) A developmental expert says he indeed is not up to par with 3 year old milestones but he is likely to outgrow all that, I could just wait

3) A Psychologist who specializes on behavioral issues and the autism spectrum says he is not autistic but has Sensory Processing disorder

They are all acting from the body of knowledge THEY have and with the practice THEY feel comfortable with. I am the one with the huge responsibility of deciding what to do, and doing nothing is a decision on its own.
I went through endless research when I had to decide on my sons vaccinations, time was of the essence and everyday without a decision was a decision I had made for my son! I took the delayed selective vaccination route and that decision lives with me everyday, it doesn't stop after the decision is made. Pretty scary at times, but only my research, prayer and self confidence lets me sleep at night.

My son needs help, and this time it is a challenge on the body and mind realm, much more complex and sensitive.

I have been reading about Sensory Processing disorder, as I did with autism and with Einstein syndrome and the idea of just waiting.

I think my son has problems and I am determined to help him out. This is what I have so far, regarless of diagnosis:

Vocabulary: He is 3 1/2 and he "only has 25 words. He is gaining more and more every week, enhancing vocabulary needs to be part of his daily efforts. This is a point where the psychologist doesn't agree with me. She says he needs ABA to resolve sensory issues.  He is gaining vocabulary and showing an interest on talking. He knows the meaning of the words he says, I am sure!

Pronunciation: He says on, two, Pee instead of one two three. He says bole-pa-eeh instead of butterfly. He has not say the F, so he says ish instead of Fish. He has made all the sounds under the sun, he will improve as he "talks more"

He does not follow directions: well, without vocabulary it is kinda tough... He knows "garbage" although he has never say the word, if you give him something and say garbage, he knows what to do, he does it, and shows a face of pride once done. He follows instructions by pointing if the task is obvious

He does not play properly with toys jumping from touching one to flying the other. Ok, I have allowed this, I didn't know that was not "appropriate playing" so now, he will have some tantrums, but he will learn to play with a toy "completely" AND pick up when done! The psychologist did give me a good tip on this, to film my hands playing with a toy completely and show him later on the TV, he learn very well from DVDs (just like mommy)

He stares to toys or his hands on an angle. Ok,she got me here, I thought it was part of imaginative play, she said that is not appropriate. Not sure how to help with this, need to research.

He doesn't manage well separation from me and randomly rebel against change of activity. Need to research how to do this

He doesn't play wall with others, prefers to play alone. Coincidentally or not, he is more social since his dad and I started working with him on vocabulary and shapes and he has been watching more early childhood DVDs (instead of just handy many and mickey) At school they tell us he is starting to participate more and more. He is starting to acknowledge the presence of other kids and he even greet a smaller boy the other day saying "Hi baby"

Well, it seems to me my son has a case of the SRS (Spoiled Rotten Syndrome) I was always picking up after him while he jumped from one toy to the other. I was picking HIM up! At 3 ½ he was rarely asked to walk. I was anticipating every need and going out of my way so he wouldn't cry. In some areas I don't know YET how to help him.

I admit I am looking for alternatives to help him because the psychologist warned me ABA can be traumatic, he will cry, he will Scream! And I am dying already and we have not even stared any therapy!

Don't take me wrong, a diagnosis is useful when it makes sense because it gives us a point of reference. I can not google "my son's problems" and get tips, but I can google SPD and get information, tips, a support community. I just think diagnosis can be useful, the label is not and mother ingenuity is still the best thing out there.

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HistoryMom View Drop Down
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Joined: 23/Mar/2009
Location: United States
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Points: 1167
Direct Link To This Post Posted: 26/May/2011 at 2:08pm

Some thoughts while reading...I think you may be suffering from TMES - Too Many Experts Syndrome.   Okay - that was meant to be funny but it may not come through cyber space well. I just cringed at the multiple "not appropriate" remarks that they were giving you. How can play - which by its very definition is self defined - be appropriate or not appropriate? I mean, I get that some things may be not usual to an age and all that but I think the idea can be taken too far. To be instructed to play with a toy completely and then put it away is not play. That is work. Not saying not to have a child pick up their toys and what I am trying to get across, I am having a hard time with. I think I will stop and refer you to a book that i read while doing research for a workshop on play last summer:
http://www.amazon.com/Play-Shapes-Brain-Imagination-Invigora tes/dp/B003VWC4Q2/ref=sr_1_1?ie=UTF8&qid=1306443938& sr=8-1

With my first child I also did too much for her and carried her all over the place until she didn't get enough crawling. At the same time, with my youngest with Asperger's, I have learned not to be too quick to assume something is a discipline issue. Trying to tell the difference can be very hard. I like what you said about mother ingenuity. In the end, it is nearly always the better answer.

~Karen in NC
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