I don't know how I feel!

Rhionna - posted on 07/09/2009 ( 4 moms have responded )

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Ok, I really just need a rant. I've just found out that my 2 year old has ASD, although we don't know where about on the spectrum he is yet. It's not that I wasn't expecting it, I just don't know how to feel about it! I don't know if it's just the "grief" stage or what, I'm lucky in that Chris is starting to look at us now and we have a good conection but we don't know if he'll progress to talking or not. We were just given some basic information about it and it might as well have been written about him.

What really gets me is all my husbands family kept telling me that he was just delayed, I noticed things weren't right when he was about 9 months old but I let people convince me that he was just delayed instead of trusting my gut instincts. Anyway when he was 18months old and still not doing much I asked for him to have a review, the Dr was then supposed to refer him to a peadiatrition, he said that we'd here from them in approx 3 months (it was over the summer holidays) but when I hadn't heard anything after 3 1/2 months I started to chase it up and found the Dr hadn't even made the referal, so then I had to wait another 3 months. I just feel really let down. After that he had bloods done and a CT scan, we had to chase them up again to get the results, in the meantime he started with speech therapy and the girl who is in charge asked me how long it had been since we saw the peadiatrition, it had been 8 months!! As it turned out his pead had retired and his case hadn't been passed on! Now we have a new pead and things are finally starting to move. I just feel really let down by the NHS and just needed to get it out of my system! Sorry it's long, and thanx in advance for any tips /advice/support you could give me!

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4 Comments

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Jennifer - posted on 07/12/2009

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My best wishes go out to you and your family. I am so thankfull that my children are "normal" (I hate that term) but I have worked with children with Autism and the best thing you can do is stick to your guns.. If you know that something is not working or if its not right fight to make it right. The only thing that is important is your son and your family. The more you fight the more poeple (Dr's) will listen to you and your opinions. I now work in health care and from my point of view this is a very big thing. And don't forget to care for yourself as well, as a mom of four thats something we all can do a little more of. Best wishes and hope for you and for your son....

Anna - posted on 07/12/2009

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don't feel you need to appologise for the way you feel it's only natural that any one would feel absolutly gutted for there child and the family,my son has also been diagnosed with autism about 4 weeks ago and we to are not sure where he is on the spectrum and even the proffesionals are saying that due to the fact that the behaviors change so much as they get older and progress it's hard for them to say at this time!-it has taken us a year of various proffesionals and assements to get a final diagnosis and even though i expected the outcome it was still heartbreaking-i promise you you are not alone and anytime you want to have a rant i'm more than willing to listen!.i'm really glad that you have now got a diagnosis because now you shpuld be able to acess the help your little man needs to progress,we are just tring to get it all in place must admitt it's bit of a nightmaire at the mo but every sign of progress with him makes it all worth it-wish you the best of luck-take care x

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Please, this is the place to let your feelings out. My son received his dx last Aug. We had to wait a long time also. I had his infant child developmental specialist suggest Autism on her 1st visit. I was taken aback and did not really want to hear it. I know something was up but took a few months to feel ready to persue a dx.

I am so glad I did. This has opened more avenues for him and he is now talking.

Give yourself time to sort out your feelings. You do not have to have everything figured out tomorrow.

Brenda - posted on 07/09/2009

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Hi Rhionna,

My heart goes out to you:) Put a smile on your face, because now you have a dx. There are so many parents out there that don't and are still struggling to get one. And unfortunately there are many parents that are in denial and don't ever do anything. You are one of the rare ones that will do whatever it takes to make sure your little guy can suceed in life. Despite the setbacks you can do so much now to get your child on the right path, listen to every advice, but don't neccessarily do everything. You know your child better than anyone. Research all options, therapy and plans before implementation, until you are comfortable going that route. One advice that worked for me was to hit my son hard and fast with therapy, (Occupational, Speech, and Behavioral/physical) Make sure he is getting these daily if possible. Socialize Chris (my sons name is Chris too:) as much as possible with normal developing children and adults. Take him everywhere and anywhere you can. Don't apologize for his disability, he is who he is. You will find him to be a joy most times. They are very imaginative and intellegent. All the educational testing do not reflect what that little guy knows and can do. As a said before you know him better than anyone. I went through the same scenerio as you except I noticed problems with my son @ about 2yrs and didn't get testing until 3.5yrs. I fired his pediatrician because he was not showing enough support for my concern. You are your childs advocate, and there are resources in your area for him and the family. Take advantage of anything offered and if its not there. Call you Senator, Congressman or whoever and complain, start a campaign. Make it happen for your son and any other child with disabilities. Good Luck by the way if you don't have much patience, you will learn it soon:)

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