relatives and spouses

[nimamom]

How do people cope with having in-laws, relatives and even a spouse deny there being anything wrong with a child who has this condition? I have heard "He's just lazy that's why he doesn't talk" (he's two I don't think he even knows what lazy is) or "He is just waiting to talk, and some kids have strange behaviors." (Yes I know both of these things are true in some children, but my son is in a program through our Regional Center and he does have major delays and autistic-like behaviors). I feel as if the Regional Center and myself are the only ones who see that Max needs help before it gets worse and he is harder to help.

I am very lucky to have found this website, because I know there are other parents out there who are in the same boat. All the postings and replies are very informative and do help. Thank you!

[MOM2CHRISTIAN]

I understand what you're going through. My mother in-law is the same way. My son will be 5 in Feb and is nonverble. She always tells my husband that "Christian is just being lazy" and that "We need to make him talk". She said this to me when we first got the diagnoses, and I let her have it! Just remember that you're child was given to you for a reason, who cares what other people think. I have strangers in stores come up to us and ask Christian "whats wrong with you, are you deaf?" People can be so heartless! I try to hold back,but it's hard! I'm lucky the rest of my family including my husband are all understanding and suport Christian. I also have a 3yr old. She learned early on that her brother is "special" and NOT to listen to what other people may say about her brother, including her grandmother! I hope this helps. How old is you're child?

[nimamom]

Thank you for your input. My mother-in-law does a lot for our family and usually is very supportive. I think she just doesn't want to agree that he grandson is not your average 2 year old. I just let her know what is happening and what I'm going to do.

My son, Max, is 2 years 4 mos. old. He can say some words, but never any phrases or sentences. We try and try to get him to say new words and nothing. Once in awhile he may say something that is a new word, or we think it is a word, but he rarely uses it again. He also has many paculiar behaviors that I have never seen, ie. gets extremely excited about ceiling fans, grocery store lights, and vacuums. Max also loves to hold a paper towel and crumble it over and over in his fingers and watching the paper towel very closely while he is doing this. He also lines up toys/shoes/food across the floor, stairs, or table top. There are others that are not so habitual or intense as these ones.

He is now attending a group type setting (Max and a set of triplets) with an infant specialist at a school for children under 5 ran by our school district. He has had an initial assessment for developmental delays, and also an assessment by the Psychologist. The psychologist that did the assessment on Max said he didn't want to put a label on him now, but agreed that Max is showing many symptoms based on the Clancy scale and the DSM IV scales. The psychologist wants to see Max again closer to his 3rd b-day in September.

We have an IFSP review meeting this coming Monday to review more services Max is going to be needing, triggered from the psychological review. I'm going to ask for an Occupational assessment and speech/lang. assessment. I know he should be getting speech therapy to help him communicate.

I also have an 8 year old daughter who does not have any delays or disorders. She has also realized (without me explaining everything to her) that Max is different than other 2 year olds. But she is very protective and loves him so much. It's amazing how siblings seem to pick-up on certain things and just learn to make adaptations in their lives. There are times when she does gets frustrated with her little brother, but those reasons are usually because he is just being a little pesky brother.

Sorry for the long story, but I find it interesting to know people's different experiences and challenges in this area.

[Dave]

My son, Michael is now seven (7). He is still in diapers and does not talk. Family and friends over the years have said many different things. The fact is none of them really know or knew what autism was, much like my wife and I. Accepting that it is a neurological illness is hard for some people though. My grandfather took me aside one day and confided that he thought Mike was deaf, but I knew he only meant the best as the two of them were the best of pals. I just told him his hearing had been tested and we both obsevred together how he paid attention to some sounds. He's not deaf, he just has selective hearing. ;) How do I handle family members? I educate them and they seem to grasp what the deal is. Hopefully they will be like.... :idea:

I hope you enjoy the site and welcome to Autismtalk.

[Jorcon]

The funny thing is, I am the first one to mention I think our son has Autism and/or PDD. Everyone from family members to friends...oh no, he does not have autism. Also, I've heard he's a boy... he has selective hearing. Recently, my mother-in-law, whom works in a day care. Comes up to me and says, she has a little boy with PDD disorder...that what she thinks our son has. In addition to, he's doing fine now.

Somedays, I want to scream...of course, I smile and pray our son will do fine. I believe it is hard for people to face other people with disabilities...I read somewhere..all people have disabilities in some areas or other. Some are just more noticeable then others!
:)

[mlwear]

This is one I'm really struggling with right now. My husband seemed to hit an acceptance stage, but now is in denial. About a month ago, it was like it hit him and he accepted that is how things are, but now he is back to hoping that the diagnosis is inaccurate. My four year old's diagnosis has been confirmed by ALMOST every professional. That is where the problem lies for us, I think. My son's neurosurgeon won't rule out autism, but also wants to investigate ADHD and ISD before giving him the LABEL. In many ways I appreciate what the doctor is doing, but it has also built up a way for my husband to say "well, it might not be autism. It might be something less serious". The neuropsychologist is absolutely convinced he has autism and is really working with me to get our kid headed in the right direction. My husband is very reluctant to educate himself about autism, also. When I'm reading and bring things up he often says "oh, I don't see that". It is incredible because these case studies are exactly describing our child. I feel like I'm pleading a case to convince him. I know how hard it is for him, but I want to be in this together. I want to be able to explain to his family what is going on. He only wants to tell them that our son has a "developmental delay". It is very frustrating. Any advice?

[Dave]

mlwear,
I am sorry to hear that your hubby isn't jumping in with both feet, but maybe he is holding onto a glimmer of hope that his child is not autistic. I know it was hard for me to accept and even today I have my times. My son is special in his own way even though he doesn't play catch with me or do other "guy" things I had planned when the nurse said, "it's a boy!" In the beginning when Mike was still in the "lack to thrive" category I thought at least one day he would just snap out of it. It took me some time to warm up, but I just wanted to know what was wrong with my son. I was crushed for some time after I found out the reality of what I might be in for, the first doctor told us his view of my son with autism at 16 (he was 2 or so) and his prescription was for my wife and I to go out by ourselves to get a break at least once a month. I didn't want to cope, I wanted him better! The breakthrough was accepting him fully for who he was and deciding to do whatever I could for him. I still have my breakdowns, but I am human I guess. Maybe you could leave out the autism part and just talk about the behaviour's and treatments you want to persue or try in your home without using the A word.

[RPsch]

We have a similar problem with my Mother-in-law. Her first suggestion is to have my daughter put in a institution because sooner or later thats were she will end up. Its not that she doesn't love her grand child,its that she is ignorant of the facts about Autism. So they give their advice to cover up their fears or thinking they are making you feel better about the situation. But it makes you angry. I know it's hard to do but try to discuss the "A" word with people who are more supportive and steer away from relatives that don't know what they are talking about. You do not need the additional pressure and sometime it takes time for people to wake up and see the reality of PDD.

[Tashia]

I think most men tend to be in denial regarding anything that might be wrong with their son or daughter. For some men it seems to reflect directly on their masculinity (bad seed or something). Although my oldest son was so severly autistic that there was absolutely no way to deny it, my middle child was not as severely affected and my husband refused to even let me get him evaluated for autism. My youngest now 2 1/2 is showing signs of a mild language delay and his father is having difficulty even accepting that.

My inlaws were amazingly supportive, although they went through a period of denial also. The best thing you can do for all concerned is provide copies of the reports from the evaluations to them, give them books on the subject to read, understand that it is thier child/grandchild too and they have just as much right to experience grief, denial, anger and acceptance as you do. Most importantly, find a good support group in your area and have them all attend with you for a while. When exposed to other children and their families, they may come to see a clearer picture of what they have been told, seen and read.

In the meantime, concentrate on your child and know that you are doing your best for him in spite of the others lagging a bit behind. Let them know that you would like to believe they are right in their denial, but you can't take that chance and lose the opportunity to give your son the most help he can get at the earliest possible starting point. Point out that if they turn out to be right, you'll gladly accept the I-told-you-so's in the end, but until then you have to follow the best information and expert opinions you have at your disposal.

[mlwear]

Well, it took some time, but I think my husband is coming around. We went to a support/education meeting on Friday. Everyone there had to tell them name and about their child. When they came to us, I opened my mouth to tell our story and to my surprise my husband said "I'll do it". At first, I thought oh no, he is going to say something like "our child may have autism, but probably not..". However, he instead gave our names and said our four year old son was recently diagnosed with autism". He also looked through the books that they had out at the meeting. So, he is starting on his journey of acceptance. A note about the neurologist we have been seeing: it isn't just us, he is extremely cautious to make an autism diagnosis. My son's teacher told me that another student in the class sees the same doc. The classmate is very obviously autistic and is low functioning. This doctor didn't make a diagnosis for over a year! I'm thinking about switching doctors. I know he has good intentions, but EVERYONE else has diagnosed my child as having autism except this guy. I'm getting off the subject here, but at least I now know that my husband doesn't take his findings as false hope anymore. Thanks for all the advice and input.

[Dave]

I am very glad to hear about your husbands acceptance. I read a few posts earlier about men not being so open due to machoism on some level, I think that is very true. The emotional roller coaster we all go on with our childrens diagnosis is very real. Doctors we saw early on were very cautious too about slapping my son with autism, in fact he was diagnosed with failure to thrive for a long time and we just struggled to get him to eat. He wouldn't drink an 8oz. bottle in a days time, it was a scary time as he was my first child and my wife and I were very young parents.

[mlwear]

I'm sure that early diagnosis was very frightening. In my opinion, failure to thrive sounds terminal to people who aren't in the medical profession. At one time we were told that my now very healthy oldest son would probably be listed as failure to thrive because he lost a lot of weight when he turned one year. (He is perfectly fine now), but I was really scared. He was my first baby and I thought they (the doctors) meant that he may not live. Wonder why the medical community uses that diagnosis so freelyand are so reluctant to label a child with autism?
Anyway, my youngest son (who I have been writing about in this forum) saw the neurologist today and was officially diagnosed by him as having high functioning autism. After many months all professionals are finally in agreement. It is very odd to be relieved by this. But I digress...Getting back to the thread topic "spouses and relatives", my mother-in-law believes we are over-reacting. Her brother-in-law has a niece with severe autism. Since our child doesn't have the same traits as this other little girl, he must be fine. As of now, my opinion on this is "whatever--believe what you want". I have too many other things to focus my energy on than convincing my mother-in-law. We seldom see my husband's parents, so they don't know our children well. However, the thought of letting them babysit for a day would probably change her mind with no other effort from me.

[Dave]

Failure to thrive didn't sound very medical to me, I thought it sounded more like a personality flaw. I always would ask what was it exactly and why wouldn't my son want to thrive? In my opinion it's a copout to we don't know what's going on and we are looking into it and have no idea at this point.

My mom became my greatest fan after she kept my three kids while my wife and I went on a weekend getaway. She never knew how difficult it was to keep my son. Hearing something is one thing, experiencing it is another. Of course my girls are very good and I have had them be my big helpers from early on, so they helped out grandma.

[illy]

Our son who is three has asperger syndrome. However the majority of my family - Mother and my two brothers refuse to accept this. About ten months ago I realised something wasn't quite right and talked about my concerns to my mother inparticular. In december a Specialist Doctor came out to assess him and agreed that his behaviours loooked like he was possibly on the Autistic spectrum. The doctor has since confirmed that he has Asperger Syndrome, but my mum still refuses to comes round to this fact. One of my sisters is very supportive and also tries talking to my mum about her grandsons condition. The one big problem at the moment is that my mum and me are not talking after an arguement we had about my sons condition. She seems to think he is just a little bit slow in some areas and has been spoilt a little bit by other members of the family. I just can't see any way forward regarding my mum and brothers and i don't think they will ever accept him, which isn't very nice for my son, as see doesn't see his gran or uncles because of this dispute. One of my brothers seems to have a phobia when dealing with anyone who has a slight disability. I don't feell that me and my mum are ever going to agree with whats wrong with my son, so I wont get the support that I need.

[shanni91]

boy i thought i was the only one with this type of problem. my son is four soon to be five and just got the diagnosis of asd but hasn't been placed exactly yet. he is either high functioning or aspergers. my mother has been the most understanding, but then she was one of the ones who brought some things to my attention. my father is the one who i am having the problems with. he has always been the type that believe there is no such thing as learning disabilites, you need to force then to gat it, by how?i don't know hit them with the books in the haed and hope it asorbs or there is no such thing as adha they just need to be spanked. i can't seem to get it through to him. in fact just yesterday my mom took jacob for a few hours which she does about twice a month to give me a chance to spend more time with my other 2 children who are younger than jacob and my dad was quite concerned. he was trying to play with jacob and all he would say was "stupid ketchup" (which is his new saying-it came off of a cartoon)and jacob had a tantrum and fell to the floor and was rocking and covering his ears when the vaccum was turned on. he told me shannon i think something is wrong with jacob!!no kidding dad i have been telling you this for a year. i am glad he finally got a little taste of jacob. my husband agrees there is something wrong, but i don't knowif its autism. but he is supportive