Question from blended families board re: siblings

Holly_1007

Hi everyone.  let me preface this by saying that this is my first time on this board, I have never lurked or anything, so I apologize if this may seem redundant.  Also, I have very little knowledge about special needs in general, so please don't be offended by anything that I say, I'm just trying to educate myself the best that I can. 

My DH has a 6 year old daughter from a previous relationship.  lets call her A.  A's mother and DH split before she even turned 1.  DH is now re-married to me, we have a 2.5 year old son and are expecting our second child in about a month.  A's mother also re-married and has a 22 month old daughter. lets call the daughter B.  B was recently diagnosed with Autism.  She is just barely learning to walk and cannot say more than 3 words.  Their mother has her in early intervention 25 hours a week (per the mother... I'm not sure if this is typical/ accurate or not). 

My question is, how do I help A with this situation? She is only at our house every other weekend and one weekday a week.  I know that this is going to have a HUGE impact on her life at her mother's house.  A's mother and  her DH are having a very tough time with the diagnosis and their marriage is very rocky right now (per what A's mother has told my DH).  I don't even know how much A knows about the situation with her half sister, or between her mom and step-father.  I know that I cannot educate A's mother on how to handle the situation, but I was hoping some of you could give me some advice on siblings of kids with Autism.  (I have already asked on the blended families board about how to go about this in the blended family situation, I had multiple suggestions to come over here).  

In the past few weeks A has been increasingly needy, whiny, and overly emotional.   She was already having some sleeping issues at her mothers house due to B being non-verbal and screaming when A was sleeping, I cannot forsee this getting any better anytime soon.  We are trying to stick to our schedule and routine the best we can when A is here, but we will also be throwing a baby into the mix here very shortly and A will be starting first grade in 2 weeks.

so any suggestions on how I can help my step-daughter?

ETA: I hope you guys don't mind if I hang around for a little while to try to better educate myself on the situation as well...

Holly_1007

Auntie- thank you so much for your response.  It has definitely been very helpful.  I told DH about the Sibshops, and have started to look to see if there is something in our area.  At this point I feel like it is the mother's responsibility to address the issues with my step-daughter on a full-time basis.  On the one hand I don't want to overstep my boundaries, but MY priority is my step-daughter.  I think we will give it a few weeks and see how the adjustment goes with school.  Part of the issue could be the constant intrusion of all the EI apts.  From what we can tell most of them take place in their home.  I questioned the 25 hours because that seems like a LOT of time to me that is being taken away from my step-daughter and a LOT of attention on the sibling. 

Therapy is also a great option, however I'm hesitant to overstep whatever the mother has set in place.  I completely agree it will take a little while to digest such a diagnosis, but at the same time don't want to see my step-daughter suffering. DH and I will continue to monitor the situation closely as my step-daughter already had some other issues going on (not being very successful in school, possible speech problems etc) and I don't want to see her get shoved aside because B needs MORE assistance.

thank you again

lite-bright

I think that having a sibling with SN is not the biggest issue in your SD's life; it's just going to make things harder for her than they already are. Why should she trust you or feel safe coming to you with difficult emotional issues -- which would be hard enough for a 6 YO -- when you've made it clear you don't like her? 

I took a gander at your posts on BF and post history. It's pretty clear you hate her mother, don't like or agree with how she's raising SD, and that there is pretty much zero positive co-parenting, and not much motivation on your DH's side that doesn't result from you pushing him to have a relationship with SD. It sounds like BM is a doozy of a b!tch, admittedly -- but you admit to taking out your dislike and frustration for BM out on SD by not being particularly kind or patient; you refer to her repeatedly as a "brat," one who "isn't even mine and doesn't listen to me," and you call her reactions "weird" when she shows that she's uncomfortable in your home.

On the other hand, you do seem genuinely concerned about her health and school issues, and frustrated that your DH isn't more proactive in relationship to SD and dealing firmly with BM.  

You clearly are all -- DH, BM and you -- struggling with dealing with her, and what that really comes down to is that SD is getting the short end of ALL the sticks. She's the oldest kid in two blended families, with one sibling with SN and severe behavior issues; and on the other side, a toddler adored by his mama and a new baby to arrive shortly who presumably will get equal adoration. She probably doesn't feel like she is 100% getting her needs met anywhere that she lives right now, and that's tragic. 

And now you're over on BF criticizing how BM is dealing with the grief of an autism diagnosis, plus a marriage in trouble because of that dx. However much of a b!tch she is, she's just been handed a devastating diagnosis with the life-changing news that her child may never hold a job, get married, go to college, or live independently. All of those stats are dismal for people with ASD. You said she's working FT, dealing with a child who needs 25 hours of therapy a week and screams constantly at night, and yet from your POV she's "doing it to herself". Let me tell you, there are very few attractive choices when your life gets turned upside down like that. Especially if you fear that you're about to end up as a single mom again, with two kids to support, one of whom has had school struggles and the other who has autism and may require expensive (easily $100+ an hour, often not covered by insurance) therapies beyond early intervention, with a lifetime of therapy ahead and no guarantee of functionality.

You complained about her signing SD up for activities, but could it possibly be that BM is trying to provide some positive, structured time for SD that gets her out of a house that is probably very stressful right now? You don't seem inclined to give this woman the benefit of the doubt anywhere, under any circumstances, even when you know she's probably having the absolute worst time of her life right now, dealing with a situation that is going to affect her entire family for the rest of their lives. You want to lay it all on BM, but SD's behaviors recently could be just as much from anxiety over the new baby coming at your house as from what's going on at BM's. A little empathy on your part can go a long way. BM is going to be under even more stress and probably harder to deal with as she and her DH figure out how to deal with a dx -- that takes TIME and really does involve grief, grieving for the life you thought your child would have, grieving for not getting the typical parenting experience you thought you'd have, and changing your hopes and dreams for your child; getting them the help they need, and accepting them as they are. And you don't necessarily need to show it to BM, but maybe truly thinking about the gravity and desperation of her situation will help YOU be a little more soft-hearted toward SD and less angry with the situation overall.

I think the things that will help your SD deal with a sibling with SN are the same things that will help her overall. She needs to have as much stability as possible (highly unlikely with a new baby arriving soon, but one-on-one time with her dad may help), be assured that the adults in her life love her and feel she is important and welcome, and have as much structure and predictability (including predictable and appropriate consequences) as possible when she's at your house. You have zero control over what happens at BM's, but you know that. 

Both you and DH can work on tiny baby-steps of repairing and strengthening your relationships with her, which may take a very long time depending on how much of your hostility she has picked up on, complicated by the fact that you see her so little. I hope you're still in counseling to deal with your issues with BM. Perhaps a family counselor can help as well. Your DH could also request that DD speak to a school counselor once school starts, so she could have an actual, neutral person to talk to -- since his requests must be made through attorneys, that will be documented and can only be in his favor in court actions. Maybe, just maybe, instead of trying to get BM to take over more transportation, you and DH could try to turn that time into an opportunity for gentle and positive one-on-one conversations with SD, and try (persistently!, this kind of thing doesn't happen when kids feel wary and uncertain of relationships) to draw her out and get her talking with you about easy things. That might lay the groundwork for her to be able to talk to you guys about the hard things, like having a sister with SN, or being jealous of your DS and baby, or whatever.  

Your DH -- since BM actually called him and may be open right now to non-lawyer communication -- might even take this as an opportunity and say something like, "We know you're dealing with a lot right now and that this is hard for your whole family. Could we help by keeping SD more so that you can concentrate on sibling/get some time with your DH? How could we make that work?" It may not work -- she may not want to send her DD somewhere where she feels uncomfortable -- but taking a non-attacking approach that makes it sound like you're helping her while you get what you want (more time with SD) is worth a try. 

My DD1 has autism. She is very functional, sweet, verbal, and loves her younger sister who is typical. Her deficits are mostly in interacting with peers. That doesn't mean that I don't fear every.single.day for her future. The financial, emotional and stress-related toll of a child with SN breaks up families regularly. I did go through a grieving process -- denial, anger, you name it -- and that's typical. DH and I also plan to do our damndest to make sure that DD2 isn't responsible for her sister financially or in any way beyond what a typical sister would be -- but that's impossible to predict and I hope that whatever else happens, they love and understand each other. We may send DD2 to a different school so that she can define herself apart from DD1, if necessary.  

I think your SD is in a very, very sad position. You sound incredibly frustrated with the entire situation and admittedly have little understanding of what an autism dx means -- it's not something that's going to go away after a few years of therapy, this is a lifelong condition with very unpredictable outcomes. I'm sure this isn't what you thought you signed up for, when the sibling with SN isn't even in your home and you have zero control over whether SD is getting what she needs from her mother and step-dad.  And your life is about to get even more complicated with a newborn and toddler to deal with, which I think means you're going to have even less energy and time to put towards that relationship with SD and will probably be sleep-deprived and short-tempered yourself, which doesn't bode well for her.

Auntie gave some good advice on sib groups, once your SD knows about the dx. If there are support groups for young children of divorce in your area, I would look into those as well. I think the absolute best thing you and DH can do for her immediately is to make sure that she has a neutral adult, and hopefully other kids, to talk with. Because I think it's a very strong possibility that she doesn't feel she can open up to any of the adults in her life right now.