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to diagnose or not to diagnose. what is this called, anyway?

post #1 of 3
Thread Starter 

My dd is a HSP.  She also has SPD.  She also has anxiety.  She went through a period of having a touch of OCD.  At times I have felt that she may be on autism spectrum.  I have no support whatsoever, especially since I am "mainstreaming" her.  In writing this, I wonder if "hiding" it from her could be doing a disservice to the child.   I am surrounded by horribly invalidating family and the cruel, cruel world.  She compensates well at this point.  There were some very rough years though.  It is fairly smooth sailing for the most part, though.


The things that I have tried and feel may have helped:







spinning, swinging, bike riding

bounce house

crashing on bean bags


deschooling, unschooling, homeschooling during the youngest years when she had lowest coping/compensating skills


the Specific Carbohydrate Diet (we did for a few months)



raw milk

digestive enzymes

b vitamins


She is doing great.  Problems come in when she is sick.  I have no support during the difficult spells.  Literally nobody gets it.  I am so angry at all the defending I have to do.  I want to crawl in a hole.  The only saving grace is that she generally appears to roll along with society's demands at this point.  Unfortunately, her sister is showing some signs of similar problems, so I am triggered because I am having to deal w/ it all again.


Also, the Dentist is a MAJOR problem right now.  She has extensive decay.  She won't sit in the dental chair.  My dental insurance won't pay for special Pediatric dentistry or sedation unless she is "special needs".  It doesn't make sense to get a diagnosis because of health insurance costs and the fact that the therapies she needs can be handled w/out a diagnosis.  I guess I pay out of pocket, now.  I am frustrated because I feel like life would be so much easier if I could have a label to put on her when these things come up.  My husband doesn't understand and is in denial.  Also, I know that it all gets worse when she is sick.  I wonder if it is PANDAS, too.  I am tired, sad, and feel defeated and alone.  I am simultaneously hopeful and happy that we have come as far as we have, and proud of all that we have accomplished together under these circumstances.  I wish for some validation and understanding and feel so isolated :(

post #2 of 3

The feeling of isolation is the worst so here is a virtual hug hug2.gif. As her mum you know her better than anyone else. You know what she needs and how to get it for her.  If the dental issues are super bad, then there is an argument for a diagnosis, however you seem to have your head on stright, thinking through the pro's and con's.


Keep moving forward, and keep positive.

post #3 of 3

I'm so sorry to hear about your struggles. I have two kids on the spectrum and weren't diagnosed until last year so I get where you are coming from. At first, when I thought something might be up with them, I was resistant to getting a diagnosis for many of the reasons you mentioned. But as they got older their issues became more difficult for me to handle. And I also faced the judgements...that was the hardest part. Once we had a diagnosis the family did a total turnaround. And my DH came on board (he, too, was in denial for a long time). 


I live in Canada, so I don't understand the health care cost issues you are talking about, but we do need a diagnosis here to access the services (unless we paid out of pocket, but we are spending about $14,000 per year on each child so that would be tough!).


One of the things I really enjoy as the kids get older is opportunities to participate in community activities that they would not be able to in the "regular" setting. For example, there are autism programs for sports and recreation, we have a therapeutic riding centre, etc. My kids can thus participate in activities among people who understand their behavioural challenges and don't judge them and go out of their way to make it a success. 


The last thing I wanted to say is that when I shared with my DD that I thought she might have Asperger's, and showed her the book I was reading, I cannot describe how excited and relieved she was to hear that there were other kids like her. Even though we never labelled her before she KNEW she was different, knew she struggled with things that other kids didn't, and knowing there was a name for it, that she was not alone, was huge for her. She proudly tells people she is an "Aspie". I have heard many stories from adults who were diagnosed as adults and wished they had known when they were younger. 


I'm not trying to convince you to diagnose - I totally respect those who choose not to. I just wanted to present my reasons in the context of the issues you struggle with, especially that of family and others judging you and your DD. While I try not to throw around the labels too much (my kids are more than just autistic!) it has been immensely helpful in changing other peoples' attitudes - not just towards me, because I'm a grownup and can handle it better - but towards my children, who picked up on the fact that they were being judged badly by others, too. And that is hard for a young person to deal with. 

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