i'll try to make this brief but here is the situation.

My son Charles has not been officially diagnosed as having autism, but at almost 2 he shows so many signs and our therapists (and we) are VERY eager for him to be seen by the ped. neuro next week.

My immediate family and one close friend of mine know that we are concerned about charles. (we don't live in the same state as any of our family) My parents know we are bracing ourselves for a diagnosis of autism, but thats it, no one else really knows.

My husbands family however, know that both boys are in speech therapy and that charles gets OT, but they don't know of our real concerns. They don't call that much, and aren't that involved, but they are still family that should know of our current struggles.
BUT...here's the kisser. One of my SIL's boys is now 4 and for over 2 years they have been encouraged by my husbands family to have him evaluated (from what i have been researching, the behaviors i have seen of him he seems to be on the moderate to severe end of the autism spectrum...thats my opinion, but also shared by all of the family.) But, my SIL and BIL have been in serious denial that anything is wrong and they ADAMENTLY refuse any suggestions, in fact they are seriously offended when people won't accept their son for "just being a kid." (this is heart breaking, i know...)

Anyway, it has been hard for me to watch my poor nephew struggle, but we aren't too involved with them since they live so far away.

So, the point of my post (sorry, i knew this would get long...)
is this--we are going to all be together with my in-laws in a month for the kids birthday and some july celebrations. ALL my in-laws will be there, including this SIL and her family. My question is, how do i delicately inform my DH's family that we have been through hell the past 6 months and are now starting to see what problems charles might have and how to fix them, without offending this SIL? i don't want her to think since we see x problem and y problem in our son, he is getting a mile long list of therapy, when her kid at age 4 is STILL for the most part non verbal, doesn't integrate, etc.

Sorry this is long and rambling, i am just feeling the heat of our 'vacation' coming up and how we are going to handle it.

i probably just need to come out and be upfront with them and tell them these are our concerns with charles, etc, and not even think about what my SIL will think or say.
i guess they don't really have to know anything for a while, but it would be nice to have a little support even if it is from long distance becaues my DH and i are alone in this state and its emotionally hard to do this alone.

Anyway, thanks for 'listening'.
any input would be great!
Meg

I would inform your family for two reasons. #1 they are family and will want to know and may want to help. #2 educate them. This will them understand and get to know Charles. Being that you be going to gatherings this could be trouble for charles and he might act out or they will understand why you parent him the way you do. By speaking up your SIL and BIL may or may not speak to you. But maybe it might make them think harder about their own son. Seeing you be so strong and having great information and seeing how therapies have helped charles they might come around.

p.s.
we have a friend who is denial to.. and now just starting to get what she needs for her son. So it could be blessing in disguise

Danielle
Easton, Blake & Hunter
1-24-99

Meg I think you will be fine sharing your trials with your family as long as you don't make reference to their son at all, just tell them as matter of factly as you can and keep your comments to Charlie specifically. If they make the connection that their son is 4 and is doing many of the same things your son is doing at 2, that will be up to them.

MTM - mom to Michael(84),Stephan(85), Thomas, Matthew and Kathryn - born 12/27/99 at 32w 0 days

thanks danielle and MTM for the input.

after getting all my thoughts typed out it helped me see the situation more clear. my DH is out of town so i don't have anyone to process with! (23 mo.olds don't listen very well... ha ha)

i have been thinking about it all day and danielle, you said it perfect--they are family and my MIL and FIL LOVE these babies, and i know they would feel awful if they didn't know what we were going through. and also, my SIL is ALWAYS saying, "he is my son, we are his parents and we will do what is best for him" so i am going to take the same attitude. we know charles better than anyone and we are doing what we feel is very best for him. period, and quite frankly i don't really care what they say or think (other than i hope they will see how therapy benefits our kids)

also, i WANT to educate them like you said so that they can know and learn how to interact with him and stay out of his way when appropriate too!!

thanks again for letting me vent and process. no wonder by 6 pm my brain is mush....

Meg

Meg,

Good luck with everything. I agree with what Danielle and Ruth said. It is important for you to discuss these issues with all family members. They won't really know what you are going thru - only people in similar situations will. It is important so they know how to interact with him and as he gets older to not think his problems are due to lack of discipline.

I would like to ditto what Ruth said. It is fine to share your experiences as it relates to Charles, but I wouldn't reference your nephew at all. As heartbreaking as it is, there are a lot of people in denial about their children. Also, you will find with autism, so many professionals and parents have different views on treatment. We have a friend of ours with a 7 year old son who is somewhere on the spectrum - in my opinion. I have thought this for over 4 years. His parents just keep saying that they don't want him to have a diagnosis. I talked to Devon's pediatric neurologist about this and he said that he sees a lot of parents who don't want a diagnosis because once it is written down, it is never erased. At first I didn't understand, but now I do. Since Devon has been diagnosed I have had professionals tell me a lot of cr_p: that my other sons are probably on the spectrum, that one or both of my other sons must have ADHD or be bi-polar, that Devon would never talk and we shouldn't work on verbal communication - actually all of these comments were from Devon's speech therapist! My other two sons are typically developing 3 year olds.

Trying to get a diagnosis is very stressful. Once you get a diagnosis, deciding on treatment and dealing with the diagnosis is overwhelming.

FYI . . . my son Devon has moderately severe autism and is (currently) non-verbal.

Take care,

Colleen
Mom to Connor, Alec & Devon
5/10/2001

http://lilypie.com>

thanks colleen,
thats exactly what my SIL has said. one time HER MIL told her that she thought nathan needed an eval and my SIL said she didn't want her son to be 'labelled' and to be on 'a million medications.' its sad when people aren't willing to educate themselves, but anyway, my feeling right now is, if charles gets a label, that is fine because hopefully it will mean he gets HELP!! and hopefully more doors will open for him as far as education and therapy goes. it is very stressful for me, but at the same time i'm anxious for someone to confirm my suspicions and get us on the road to change.

i am going to call my MIL today and talk to her. we'll see how it goes!

Meg

Meg, first of all, best wishes to your family. It's such a hard time, and even if it's in the back of your mind, hearing any diagnosis is still very difficult.

Again, I think every family reacts to child development in the way that fits them. I have a friend who suspects something with her son, but she is trying some diet changes and different interventions and waiting and hoping for the best before having him evaluated in a few years. I am more of a "have to know" kind of person. My DH is a "fix-it" type...so we wanted to know right away, and as soon as we did, got over the initial despair, we jumped right in and got started with ABA. Are either of us in the wrong...no we are just parents doing what we think is best.

I think sharing your news with your in-laws will be wonderful, because they will be able to give you the support you need. It may also be beneficial for your SIL to see how you handle it. I just remember emailing one of the triplet moms with a son on the spectrum in my like-age email group after dx and her response was "ok, now you know...get busy." It stuck with me, and I haven't stopped since. I am sure your SIL sees the issues with her son. I know before diagnosis, but during evaluations, I remarked to a friend that I wished I could go and live in the land of oblivion for awhile, and be one of those parents who doesn't have to evaluate whether their child is playing with a toy appropriately or not. Good luck to you and next week.

Krista
Michael, Katherine & Daniel
7/25/01 27w5d

Krista
b/g/b
July 2001