Parents of kids with autism, please read

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Hello there. I was just wondering if any of you would be interested and participate in a ''sticky'' if I started one for parents of kids who have autism. I ask because sometimes I come across stuff that isn't exactly nursing related, but still would be very interested to the number of us that I have noticed mention having children with autism. I never know where to post it. I usually put it in the ''developmental disabilities nursing'' forum, but it isn't quite right there. Plus I think it tends to get lost, since there aren't usually many responses, so the people who would be most interested end up missing it. At the same time, those responses that I get in that forum are often from people who actually have lots of experience with autism, which is a good thing. Don't get me wrong, I understand that everyone has a right to post in whatever forum is of interest to them. Personally, I would like to see the ratio of responses from people personally involved increase, though. Let me know what you think, and in which forum you think that such a sticky might belong. Thanks!

Specializes in Biomedical, Hospice, LTC, Office.

I'm married to a guy with Asperger's Syndrome and pregnant. Have to admit I'm a little scared. I love him, and he's definately difficult to handle sometimes. He has some behavioral issues that are a little weird (I've caught him running in place in the corner when he's overstressed more than once) and some odd social problems (one of the things that we are working on right now is looking people in the eye, he never seemed to get the knack of it). I'm slightly concerned that the baby will also have this problem. I have a friend that is a psychiatrist, and he assures me that there's about a 17% chance of this happening. I guess that means there's an 83% chance that it won't and after living with hubby for several years I think that I can deal with the baby. Think being the operative word. I have some anxiety about it.

Anyway, if any of you would like some perspective on how these kids behave when they grow up lemme know.

Specializes in Public Health, DEI.

Running in place in the corner may be unconventional, but look on the bright side... he's relieving anxiety in a non-destructive way. If baby does have it, at least Dad will be there to provide insight you wouldn't get otherwise. Good luck with your pregnancy.

Specializes in psychiatric, pediatrics.

woah cant read all the replies right now but I would say yes, that would be great :] My son has autism

It looks like it has been quite a while since anyone posted here, but I thought I would try to ask a question anyway. I have 4 kids (8, 6, and 3yo twins), and my 6yo has autistic disorder. I was just accepted to nursing school. It is a weekend program, so classes/clinicals are Fridays and Saturdays. I am so scared that I am not going to be able to handle everything- 4 kids, one with autism, and nursing school. For you ladies who attended school after having kids, how did you handle it? I know that NS is a huge time commitment, but my family cannot suffer the loss of any care and attention. Am I crazy for trying to do this?

Specializes in NICU, PICU, PCVICU and peds oncology.

My situation isn't quite the same since my son doesn't have ASD. But he does have severe cognitive and physical disabilities as the result of several cerebral infarcts he suffered following a liver transplant when he was 5 years old. I also have 2 other children who are 2 and 4 years older than him. I went back to school when my son was 9 years old; my program was full time weekdays and it definitely wasn't a walk in the park. But I did it and so can you. Sit down with your husband and make a list of every possible problem that could arise. Then come up with a contingency plan for every one of them. Figure out which of your current responsibilities your husband is willing to take on - he WILL have to take some of them on! - and establish the ground rules... you WILL NOT be following him around reminding him to do whatever it is, and you WILL NOT do it yourself if he "forgets". Make a weekly schedule for all of you and make sure you include adequate time to do your reading and studying. Make sure you stick to it! Trust me when I tell you that I know how hard it is to give up control of a precious child and let someone else be responsible but it's necessary. Your son has TWO parents. No, Dad isn't Mom, and no, Dad won't do things exactly the way Mom does, but as you'll learn soon enough, there are many ways to accomplish a task safely, competently and correctly... even if it isn't YOUR way. Who knows, you may find that life gets a little easier. No, you're not crazy. You can do it.

Hi There seasoned parents of autistic kids.

I am beginning to wonder if my just about to turn 3 year old is autistic. Currently he is functioning about a 1 year old level. He has recently started to walka nd currenly just babbles, but this babbling is getting more frequent, but no actual words.

We had been seen by a paediatrician and various specialists. At this stage we have been told he is globally developmentally delayed. We adore him, but are devastated that he is developmentally behind. And that it seems he is going to need support his whole life (unless a miracle occurs!). They say it is too early to tell anything else diagnosis-wise yet. He is quite a sociable little guy and enjoys anyone who gives him attention - it is this aspect that make me doubt autism.

Can you give me some idea of how you can to get the autustic diagnosis and your stories of how you got to that and how old your kids were when they got diagnosed. I am not necessarily asking advice, I am just interested in sharing with others in similar sitautions like myself. Thanks again.

PS I am a paeds RN too, but it is a whole new ball-gmae being on the other side. I really take my hat off to some of the parents I have come accross over the years.

Specializes in NICU, PICU, PCVICU and peds oncology.

dreamy jean, that's a difficult situation you're in. Unfortunately, it's beyond the scope of this site to give you the kind of information you're seeking regarding obtaining autism diagnoses. Your pediatriican is your best resource for that. S/he should be pursuing all avenues to narrow down the underlying cause of your child's developmental issues. Persevere. Ask lots of questions. Push. There may not be an answer but if every possibility is examined, then you'll at least know what it isn't.

While having a child with special needs can be a burden, it's also a blessing in so many ways. My 28 year old son doesn't know his mom isn't supposed to hug him in public. His good humor is infectious. It's hard to be around him and not smile. I choose to focus on the good things. I hope you're able to do that too, no matter what the diagnosis may be.

dreamy jean, that's a difficult situation you're in. Unfortunately, it's beyond the scope of this site to give you the kind of information you're seeking regarding obtaining autism diagnoses. Your pediatriican is your best resource for that. S/he should be pursuing all avenues to narrow down the underlying cause of your child's developmental issues. Persevere. Ask lots of questions. Push. There may not be an answer but if every possibility is examined, then you'll at least know what it isn't.

While having a child with special needs can be a burden, it's also a blessing in so many ways. My 28 year old son doesn't know his mom isn't supposed to hug him in public. His good humor is infectious. It's hard to be around him and not smile. I choose to focus on the good things. I hope you're able to do that too, no matter what the diagnosis may be.

I disagree with the statement that the pedi is the best resource for getting autism diagnosed. In my experience, most are rather clueless when it comes to pinning down specifics like that.

I am the mother of two kids with autism spectrum disorders (now ages 10.5 and 13) and I have been a nursery/NICU nurse for 20 years. I'll tell you about my experience and you can do with the info what you like.

FWIW- I do think it is possible for a child to have global damage/impairment and also have autism . I babysat a girl like that once. (She had a rough time and low apgars at birth. My kids did not.)

In Texas, a group called ECI (early childhood intervention) will come into your home and evaluate your child for delays. Although they won't diagnose, they will offer services/therapy and or suggestions as appropriate for your child according to their findings. Check your state's services. There is probably something like this available.

Then, (in TX) when the child turns three, the school district takes over and you can request an evaluation. My kids got in under 'language delay/impairment' and were later evaluated by the school's team for autism, once the staff had time to see them in action and secure permission for the necessary testing. I was satisfied with their evals and did not seek an outside diagnoses, although I could have for $$$. (At that time, ECI and the school services were free. Last I heard, ECI now charges fees on a sliding scale.)

I encourage you to see what's out there and make use of the services available to you. I personally never involved my children's doctor until after the diagnosis was made, then sought one who tested them for heavy metals and prescribed oral chelation (which I think helped). She also gave us medical waivers for vaccines (we don't vaccinate -- and don't slam me over that -- it is with much research beforehand and with our doctor's blessing.). I also involved a child psychiatrist to prescribe the ADHD and other related medications one of them needs.

Anyhow, get involved in groups around you of other parents who've dealt with autism. They can be a fountain of information and support for you. And when it comes to stuff like this, NEVER take your pedi's advice as the last word or only word on the subject. They are smart and they care, but they are rarely that specialized. Seek a multitude of wise counselors, and all the parents dealing with similar things you can find.

Good luck.

Thanks for the replies. We are in New Zealand, not in USA so the system is a bit different. However the services are good and the health system publicly funded. At this stage the paediatrician does not want to put a label on him as such other than globally developmentally delayed. We do already receive good early intervention services.

I am relatively happy with that at the moment. But I am beginning to wonder if he is on the autistic spectrum. Hence I was wondering from other parents what lead them to believe there was something not quite right about their kid and how that lead to getting their diagnosis. I have found it hard to get this sort of info from any sources to date.

... At this stage the paediatrician does not want to put a label on him as such other than globally developmentally delayed. We do already receive good early intervention services.

I am relatively happy with that at the moment. But I am beginning to wonder if he is on the autistic spectrum. Hence I was wondering from other parents what lead them to believe there was something not quite right about their kid and how that lead to getting their diagnosis. I have found it hard to get this sort of info from any sources to date.

Maybe I'm strange, but I don't mind 'labels' as long as the diagnosis is accurate. (I think the 'don't label my child' thing has become a cliche concept that people parrot without really thinking it through.) I see the label as a comfort, because it helps me focus on what I need to do to fix it or at least treat it.

I was actually relieved when my first child was diagnosed, because it meant I wasn't a bad parent. Her delays did have an organic cause. [My parents had fussed at me for not reading to her enough (she wouldn't sit still for it) and my dad thought her delayed speech was because I let her watch Teletubbies.]

My parents are educated people, but parents always seem to look for blame with their kids, because they continue to see us as 'kids' and not responsible adults.

Anyhow... I've never hidden from my kids that they are dx with autism, but I also don't treat them like they are damaged or retarded or (pick your adjective). I love them and treat them like the smart, capable kids they are, and --while I try and plan for the possibilities of them having trouble or needing help later in life-- I try not to assume they can't do something or assume they won't achieve things in the future. I've done that easier with autistic child number two after watching the radical changes in number one and knowing I shouldn't judge their future abilities/functioning level by the present.

I truly feel how we treat them is far more important than the effect labels have. That is what determines how they view themselves, not some diagnosis printed in some file. And I don't know about things there, but here, they must have a label to get certain services. It is the diagnosing that qualifies them for the modifications and therapies they need. So I say, bring it on. Call them 'purple polkadotted' if you have too, just help them and get them what they need.

Regarding their dx, I don't say things in front of their friends (I leave that up to them), but I do mention it to other parents when appropriate. And I try to say things that give them a positive attitude in the process, too. "You know, we're real proud of [daughter]. It's hard to believe she didn't have any functional language at the age of three. She's come a long way since then." That comment is usually met with raised eyebrows, a look of pleasant surprise and an agreeing nod.

The symptoms I saw were: extreme stranger phobia from about 4 months in the first child, then words without true communication followed by increasingly odd and aloof behavior and poor eye contact by a year and a half. The second child was better about trying to communicate; he just didn't have the words. But after a while, as the first one came slowly back out of her shell, he progressively became more 'Rainman-ish'. Though there are similarities, they each manifest their autism (PDD NOS, to be specific) differently.

Hope this helps.

Thanks for all the replies. I have not had a computer that I have been able to log into this site for a while. I will keep knocking on doors to get some more answers. Interesting to read some of your experiences. I am wondering how on earth I am to stay sane in all this, but will get there.

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