Help with possible Autism........

[quixb]

Hi

I know some of you mamas on here deal with this first hand. My niece who just turned 2 is being tested tomorrow by a behavioral pediatrician. I just got off the phone with my SIL and she told me that they don’t think Sophia is ok. She was already tested by a speech pathologist (her cousin) and tested as delayed to severely delayed in all categories. They are thinking she may be autistic. I know nothing about this and really want to be able to support her and my BIL as much as I can and be there for them (they also have a 3 mth old) BUT I just don’t know how/what I can do. SO I was hoping some of you would share with me some info on Autism that may help and also if you have a child who has been diagnosed, what was something a family member could have done that would have really helped you in the beginning.....how can I help support her through this time????

Thanks mamas

[Willys Woolies]

That's a hard one! I find one of the most difficult things is when someone who doesn't know anything about my child's problem gives me "advice"...that's tough! Especially when they don't know what it's like to live in your shoes!

The best thing I think would be for you to be there for her and listen carefully and then ask her what you can do to help. Maybe there will be a book she wants that you can pick up or maybe you can hook her up with other mama's in the same situation..boards, etc. Also, offer to help her out with sitting, etc. Especially if she's going to need to attend therapy sessions and needs someone to watch the younger baby. But most of all, just be there for her, to listen and be supportive in that way. I find that sometimes I just need to talk to someone...not necessarily get advice from them...that's what all the therapists are for. Friends are there to be...friends!

Best wishes to her/you and all!

[i0lanthe]

What she said. Being a sympathetic ear (for anyone with a kid with delays, playgroups and socializing can get you down sometimes, from seeing what typical kids can all do already or running into moms who brag a lot) and offering sitting - those are things I've needed on an ongoing basis. Also at first I was kind of in shock or denial or call it what you will, and didn't want to tell a million people that my son was diagnosed with autism (in case he got over it overnight?) and I hate making phone calls to begin with, and suddenly there was a lot of that kind of calling to do to get medical assistance paperwork and wraparound and speech therapy set up and it had to be done within a few weeks of diagnosis... so, whatever you would want in those shoes (such as chocolate and/or a kick in the butt.)

Every time my MIL calls I'm thinking to myself "oh God, what book or magazine article is she going to offer to mail me today."

[Luvmybabies]

Just be there to listen. Don't be like people in my life and ask her what she did to make her child this way.

Really, just having someone to talk with and vent to is a huge help.

[quixb]

THanks mamas! The first thing I wanted to do was run out do a bunch of research to help her............but CLEARLY you are saying that isnt the best thing to do!! I will continue to be a sounding board for her and let her vent freely, sounds like that will be the best thing for her!! You guys are soooooo right, she will get her education form her therepist and drs, not me Sometimes you just need another veiw point to see things, kwim??

[Willys Woolies]

Originally Posted by quixb THanks mamas! The first thing I wanted to do was run out do a bunch of research to help her............but CLEARLY you are saying that isnt the best thing to do!! I will continue to be a sounding board for her and let her vent freely, sounds like that will be the best thing for her!! You guys are soooooo right, she will get her education form her therepist and drs, not me Sometimes you just need another veiw point to see things, kwim??

Exactly! From my experience with my child, I find that his therapists are the ones I listen to and go to for advice, they are the "experts" in their field. Even though I like/love them, I have a very different relationship with them than with my friends/relatives. The best thing you can do for her is not be a subject matter expert, but a friend for her....be a sounding board if she needs it, but don't be disappointed if she doesn't come to you for advice or even discuss things with you as she may not. Most times when you come to the realization that you have a child who has special needs it's extremely overwhelming and difficult to accept. She will be going through a lot of different stages, especially at first. Once things settle down and she feels more comfortable with what is going on and understands what is going on with her child she may want to open up to you and share the child's progress with you, but most likely she's not looking for advice, she's just venting or sharing her joy over the little steps of progress she sees. Many times progress is shown in tiny baby steps and it can be extremely discouraging. There may be times when she needs someone to watch the baby so she can dedicate some 1:1 time with the child who needs it. I know with my son we have people come to our home to work with us and there are times when we have sessions without the other children home because it is at times too distracting for DS. That is a a great place for you to step in for her. She will appreciate help like that more than you realize! Sometimes having a special child or a child with needs can be a very personal thing and when friends or relatives offer advice it feels more intrusive than helpful...ya know? It's easier if you feel that friends and family accept the child as he/she is and not recognize their differences and sometimes when people offer me advice I almost feel like they are pointing out his differences and picking at them. I only listen to my child's early intervention team and doctors and my heart and I try to ignore the others. Also, a great thing for me is the Yahoo Groups for children with similar issues. That's where mothers/fathers go to discuss and vent with other parents going through the same things. You can get a lot of great ideas from other parents who have "been there, done that" on what works or doesn't work for their kids and I've found that sometimes if I need to vent, I feel more comfortable going there. They are some extremely sympathetic and understanding awesome people on those groups! If you're interested in them, PM me and I'll hook you up. If your friend is looking for other moms going through the same thing to hook up with she may be interested in something like that. I find that even in the community the only other people who can relate to what we are going through with our child are other parents who have children with similar needs. It's great to hook up with people who are going through the same things....you dont' feel so alone.

I hope you don't take offense with my feelings on the subject, but in my experiences with my son this is how DH and I feel. Others with children who have special needs may feel differently, but this has been our experience and I'm just one person!

[Willys Woolies]

Originally Posted by Luvmybabies Just be there to listen. Don't be like people in my life and ask her what she did to make her child this way. Really, just having someone to talk with and vent to is a huge help.

Hi Karen!!!

I hope people don't say that...that's incredibly heartless and shows their lack of intelligence and compassion!!!

Hugs!!!

((Still loving your avi!!)))

[quixb]

Linda
Thanks for the great FB. I actually copied it and sent it to a few family members to they could read it too

heres another ??? I just sent her an email (about somthing else) and didnt really say anything, like how are, hows it going ect. I just responded to what she had sent (info on her hubbys buisness) and acted like nothing was any different. I mean I know it is and I am not trying to ignore or pretend like it isnt........but gosh it must get old and really annoying if everytime you talk to someone they are asking you hows it going are you doing better??? KWIM??? am I on with this one or way off????????

BTW she did see the dr and the diagonisis so far is they belive she is on the lower end of the spectrum (I dont remember exactly but some initial with p's in it) they of course want to do lots more testing before confirming it. They recommended she get into 40hrs of inhome therepy a week (seems like a lot??) and she was anywhere from 3 - 12 mths delayed in all areas.

Thanks so much your help has really been able to give me some insight into what she must be going through right now. I know it is a very hard time for her.

[Willys Woolies]

Hey Connie...I'm glad I could help. It's really a touchy thing ya know. You wouldn't want to feel that everyone is always pointing out your child's differences and giving you their advice either, ya know? Sounds like you did the right thing by not bringing it up in your reply to her, but you can always ask her "How's things" or "How's it going" or "How's the kids" and let her know that you're open to discussion...she can take it from there and open up whatever she's comfortable with, ya know? You don't have to target the subject directly....she will let you know what she wants you to know. When my sister calls me I'd much rather have her ask "How's things" or "How's the kids" than "How's Willy"?

I'm sure it's a difficult time for her right now. I didn't talk to many people about my DS's issues for a long time either. There's a lot of emotions that a parent really goes through with this stuff. It takes a while for a parent to get past the "my child is defective" to get to the point where you start thinking "we can work with this". It's a challenge.

You're a great friend already because you're trying to find the best way to be supportive. Most people just dive right in with their unsolicited advice and don't think twice about it!!!

I know there are some other mama's on the boards with children in similar situations....wonder what their feelings are.

Oh...and I think you prob mean PPD (Pervasive Personality Disorder). My 19 month old son has been diagnosed with SID and now we are looking at the possibilty of PPD as well....

[quixb]

Originally Posted by Willys Woolies Oh...and I think you prob mean PPD (Pervasive Personality Disorder). My 19 month old son has been diagnosed with SID and now we are looking at the possibilty of PPD as well....

Yes that must be it! I had PPD but then thought to my self no thats a diaper term!!! hehehehe thought I was getting it all mixed up!!

She is going through a really rough time. SHe keeps blaming herself for not finding it sooner, not researching her immunizations more, not giving her the right diet ect. I am sure you have been there. She is really beating herself up, I hope this phase doesnt last long We tell her there is nothing she could have changed and she really is a great mom, but she will have to work through it herself. She definaly sounded a little happier today than she has in awhile.

I would love to hear some other feedback from some mamas too