Children on the Autism Spectrum - they make us laugh, they make us cry - and we love 'em to pieces!
Being a single mum with an autistic child presents challenges normal support doesn't even touch on. Share your experiences, ideas - or even just vent if you need to, in here!
By kelly14
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.
I'm back!
Finally I got to see a pediatrician (yes, it takes that damn long to get to see a pediatrician when you live in the country!). Over the past through months my daughter has had speech therapy and has been being assesed by an early childhood intervention person.
She is much the same, but is coming along slowly. Still incredibly frustrating with many behaviours.
The good news is, the pediatrician thinks that she doesn't have Autism - he said that Autistic children do things like stare at their fingers or objects close up, line up toys, and don't role-play (my daughter doesn't do these things, and role-plays sometimes). This came as a huge relief. But following on the heels of that, was the bad news is that he has referred her to a specialist assessment team, as she is displaying too many problem areas - delayed speech development, social development, eating disorders tending towards obesity and refusing to eat meats, and also fine motor skills - she doesn't have interest in drawing, colouring, holding a pen correctly. He says that with so many delayed areas, there's a probablility that there is an underlying cause, rather than she is just slower to develop than other children.
He has given me a form for several blood tests, including to test for chromosome damage - this worries me most of all - is he saying she may be permanently mentally damaged? I know a missing chromosome can mean downs syndrome - what does a damaged chromosme indicate?!
Has anyone been through all of this?
Hi there Carly, I read your story and thought.... hey that sounds like my life!!! My son however is only 2 and has always been developmentally delayed. I've been back and forward from specialist to specialist each with their own opinion but none with any definitive answers. So I've decided to do what my gut tells me to do and believe what my heart is telling me. I don't think my boy has anything serious wrong with him, he does have a very mild hearing loss in his left ear (nothing major as he has a grommet) although he does tick a few of the boxes, I don't believe he will be this way forever. So instead of pleading for answers from useless dr's who tell me he's normal and he's just a very boisterous little boy or telling me I'm not being firm enough with him, I've decided to look for a solution. I had tried positive parenting twice before and had no luck as my son just never responded to any of the techniques so I asked my social worker from child health to come out and actually show me so she could see for herself what goes on. We just started last week and have had alot of improvements. I was also referred into the Hanen program through child health, which is a speech therapy course that also drastically improves behaviour. I had previously been taking him privately to speech therapy, but with no success, and she also recommended the Hanen program. I'm looking forward to getting into the program and seeing some changes in my son, but if it doesn't work, I'll try something else until something helps him. I was also suggested to cut tv out almost completely by the pediatrician, and although that was a rough couple of days being without my "babysitter", he has been more focussed on playing than he was before, and is just starting to respond to me. Having said that about all his improvements, it's still difficult for me when I discuss my son's behaviour and the wild tantrums that ends in him hurting himself or most of the time me, all my friends/family say to me is that "something" is wrong with him and it's not normal, yet the professionals beg to differ. He was tested through an amnio for anything serious, and it came back all good. So even though your daughter is ticking some if not most of the boxes for having a problem as my son does also, you can still find a way to work around this. Most chromosome abnormalities that aren't picked up during pregnancy or even after birth are usually not the more severe forms of abnormalities, which could be mosaic. For example Downs Syndrome is almost always picked up before birth or after, mosaic downs syndrome doesn't present till much later and is much less severe. Some can be quite scary to think that your child may have that, other's mean they will have a normal life, either way it is good to know to prepare yourself so you know exactly what your daughter will need from you and those around her. It doesn't mean that she may be permenantly mentally damaged, a child's brain is still growing so they can form new pathways if a part of their brain isn't doing what it should. My sister suffered brain damage in-utero and was incredibly slow at all milestones, the dr's wanted to put her in an institute as they feared she'd be a vegetable. She was 3 when she walked, 6 when she talked, 9 when she was out of nappies, 12 when she could do basic spelling and writing and at 25 years old she read an entire novel, now we can't get her to stop reading! She's just as intelligent as me and with a much better memory, it just took her longer to get there, however she'll always have the maturity of a child.
So if you're able to, see what's on offer in your state in the way of parenting programs, as most of them are specifically designed for children with learning or behaviour problems. The Hanen program is run through child health here in queensland, not sure what state you are in but it's worth looking into and speaking to someone to see if they can help you and your daughter. There is also a support group called My Time across australia, aimed at parents with children with disabilities or learning delays , you may find some useful info there or even a nearby group to join. And please let us know how things are going for you both.
And big hugs for you, it's not easy doing it alone, and you're doing the best job you can. I'm sure you'll find the light at the end of the tunnel soon and things will get better.
By carly
Thanks so much MiraMum- you've made me feel much better - you're amazing.
I want for my child to have a normal and wonderful life more than anything, and I stress that she's not going to be able to do that - I always hope that a miracle will occur, like you do, hoping that she will leave certain behaviours behind her. Strangely, like you, I think I DO believe she is going to be okay. Any small normal development is such a big deal with me.
She still has no boundaries- her aim in life is to get hold of things that are fragile, and eventually break them - sigh :roll:
I did also have an amnio with her and she was found to be okay.
I would be VERY interested to hear how that Hanen program goes - I'm curious how it improves behaviour, because nothing has made any difference in our case.
Many of the assessing specialists leave me feeling that nothing was achieved, because my daughter seems so clueless and unfocussed.
For example of her ability to focus, I even tried taking her to a dance lesson, where all the other toddlers (most younger than her) made her look like a bellowing idiot "I can't, I can't!" over and over. I don't think she even SAW the teacher. She then took off, running for the door and the road as I ran screaming behind her, stop, STOP!!!. She NEVER stops - I caught her with a couple of metres to spare. Time after time I have to save her from herself. If I wasn't right on top of her all the time, she would have killed herself ten times over - she has no sense of danger.
And as she gets bigger, it stands out more, as I can't pretend she's just a tantruming little toddler anymore :(. And will she ever toilet train? Aaaaaaaaaaaargh
. Does anyone else feel as though wherever they go, they and their noisy, badly behaved child draws all the attention, and people are all staring at you, judging you as as a bad parent...?
I will check out those links now, sorry for the rambling rant, and thanks again...