Tips for older kids dealing with a special needs sibling?

[SkateLeft]

Hi all,

 

I'm wondering if anyone has any advice (or book recommendations) on helping my older kids learn to be patient with, or deal with, my youngest ds.

 

He has been diagnosed with autism, SPD and has receptive and expressive language delays, gross motor delays, decreased muscle tone, and motor planning issues. He also has severe anxiety, and is currently on clonazepam at night. Our neurologist has scheduled an MRI and 24 hour EEG to see if nighttime seizures are contributing to his constant insomnia. Although he's 2.5yo, developmentally he functions at about 18 months. We get his therapy services through EI.

 

He's a sweet little guy, but he's a handful. My older kids are wonderful with him, for the most part, especially my 10yo daughter who helps me with him all day long. She really is amazing. But, as much as he wears on me sometimes, he wears on them as well. I work hard to ensure that their quality of life isn't affected by his issues, but it's a balancing act. He gets very destructive, and physical sometimes. I'm also very cautious about excusing his behavioral stuff on the basis of his issues, if that makes sense. There are just so many things going on at this age, you know?

 

Lately, it seems like they're losing patience with each other more easily. They get snippy with him and each other. I have yet to find an effective way to explain things to my 6yo. I could use some advice on that also.

 

Does anyone else have older NT kids and then a younger sibling with special needs?

[8filltheheart]

Hugs to you.

 

It is a very difficult issue for older siblings. Ironically, our younger ones seem more compassionate and understanding.

 

Our oldest is almost 19 and he sees us treating our 16 yos "unfairly" (as in 16 yos gets away with stuff that 19 yos would never get away with.) He harbors huge resentments toward his younger brother.

 

The kids that are younger than him all see his behavior as an illness. I am not saying it doesn't wear on them, b/c it absolutely does. They cry about many of the things that happen.

 

I wish I had an answer. I don't. I wish I had a way to for our oldest ds to recognize the difficulties that 16 yos suffers and that the younger kids never had to witness older brother's behavior.

 

DOn't you wish they came with instruction manuals??!!

[SkateLeft]

Thanks,

 

You mentioned that your younger ones see it as an illness. I really hadn't thought of explaining it to my ds in those terms, but that might be a way to get him to understand. I'll give it a shot and see if it makes more sense that way!

[Ottakee]

Do you have family or friends that could watch him so that you could do some things JUST with the older ones? They might feel less resentful if they get some of your 1:1 attention doing something that you can't do with him along.

 

I get respite services from Community mental health for all 3 of my kids---all adopted with special needs.

 

They don't really see each other as having special needs but I will at times use the respite services to leave 1 or 2 of them home (20ds can stay home alone during the day now) and take the 3rd out alone and do something special with them. They call this a "treat day" and they can pick a simple activity--horseback riding lesson with mom (we have our own horse), park, beach, etc. and then get a snack or simple cheap lunch.

 

I am all for having the older kids help with the youngers, doing things as a family, etc. but one issue I have seen with some homeschooling families (esp. those with many younger kids) is that the older ones become 2nd parents to the little ones and miss out on being kids themselves as they have to watch younger siblings so much. I am NOT saying you are doing this, but rather that it is important to give each child some 1:1 attention or do something with the olders without the little one.

 

One thing a friend of mine does that has 8 kids--4 older bios and 4 younger foster to adopt kids is have a "late night" with each of her olders each week. The littles go to bed by 7 and the rest by 8 but then one of the olders gets to stay up until 9 and get 1:1 time with mom and dad--reading a book, playing a game, talking, taking a walk, etc. It helps her make sure she is staying connected to the olders when the littles take up so much time and attention when they are awake.

[Laurie4b]

I would find respite care for the 2.5 year old. There may be therapeutic preschools in your area and there are govt funds for "early intervention" programs that might well pay for this totally. A friend of mine with a child with Down's who previously was anti-preschool has found it to be a very positive thing both for the child with Down's and the rest of them. It's not full day. Other options are to hire a mother's helper to shadow your 2.5 year old. If you have someone you trust to watch ds 2.5 even a morning a week at a site other than your home, that would give everyone a breather as well.

 

Our two oldest kids do think that we treat our ds with the most problems unfairly. They understand his problems to some extent--as much as we're willing to tell lest it get thrown out there in a teenaged verbal battle. We are considering having their youth minister talk with them as well. (Showing him the reports so he understands and can be a neutral person to hear their feelings, while still supporting the family's needs.) Truly, ds takes up 90% of my homeschool time, leaving the leftovers for 3 others to share. The oldest two should be becoming independent, and they are for the most part, but do still need oversight, which sometimes I'm not providing enough of. The youngest one, is fortunately, very self-motivated and comes to me for his "next subject" throughout the day. Truth be known, it takes a major chunk of our family finances for all the therapies, too. I've started to be very upfront with him about this (not that you would do this with a 2 year old!) laying it out there: "We want to do everything we can to meet your needs for your full potential. I spend x amt of time with you and your therapies cost xxxx dollars every two months. YOU need to do your part to be responsible, to be a cooperative partner in all this." He tends to delay & avoid as much as possible, and complain. I'm seeing these character issues now as more important that his other therapy needs. If we can't lick those, they will lick him in life. It's that dang-gone fine line between "Is this behavior the result of his disabilities?" or "Is this a behavior/character problem?" I've read that wrong for a while now and we're in correcting mode.

[hsmamainva]

My oldest (age 17) is wonderful with our youngest (age 6) who has autism. She has more patience than I do half the time! She's very encouraging and helpful and she's considering majoring in occupational therapy or early childhood special education, so she can go into that line of work in the future

 

Our oldest son (age 14) has Asperger's / high functioning autism, and - surprisingly / or I suppose not surprisingly - he is the one sibling who is the most frustrated by our 6 year old. He's a perfectionist and a neatnik and when she gets into his things, he becomes very upset. We've had to make sure that he has his own private space and she's not allowed inside (his bedroom has become his little refuge..if he has a game, or a special collection, it has to be kept in his room, if he doesn't want his little sister to touch it)

 

My 8 year old gets along with both of his siblings with special needs very well -- he pals around a great deal with his oldest sister, and she loves it! The two of them try to have some special time together at least once or twice a week -- downtime without the other two there....the two of them have really bonded, despite the fact that there's 9 years between them in age!

 

One thing that I try to do is to be sure that the older children have some time away from the little sister from time to time (maybe go to the movies or go shopping, etc.) or I'll take her and go shopping with her, take her to the park, etc., so they can get a "breather"

 

My oldest does babysit her, and we pay her for doing so...and that gives my husband and I a break as well.

 

But..it does get easier!! 3-4 years ago, our entire house was in a turmoil, and our little one was at a center of it! But, as time has gone on, it has improved a great deal.

 

I did enroll my youngest in a special education preschool for two years and that helped everyone!! My older ones had some quiet around the house and I was able to homeschool without distraction -- and my little one enjoyed it tremendously (she went to preschool 4 days a week from 8:30 to 1:30).

[Kathy in MD]

..... He tends to delay & avoid as much as possible, and complain. I'm seeing these character issues now as more important that his other therapy needs. If we can't lick those, they will lick him in life. It's that dang-gone fine line between "Is this behavior the result of his disabilities?" or "Is this a behavior/character problem?" I've read that wrong for a while now and we're in correcting mode.

 

Oh boy! Is that ever a problem here too?!?! Since my ds is an only child, I don't have the problem with other siblings wanting their share of attention and financial resources, but we do struggle with "Why can't I have it? And have it now!!!" We are living with "the world owes me a living" mentality :(

[JamBerry]

Sometimes I think it's a combination of both, meaning it's both the disability AND a character issue simultaneously. Just this morning, my ds wanted on the computer, but there's a few things he had to do first, including brushing his teeth and putting on a clean shirt. For some reason, this morning he didn't want to do either. He eventually did both. But as I studied him, I was noting how on the one hand he was being a brat in how he was behaving regarding the teeth brushing/dressing thing. But the fact that teeth brushing/dressing was for some reason a big deal to him today was totally a weirdo autism thing--there was no good reason for it (that I could see--HE certainly thought there was a good reason, I'm sure!). So, I find myself at times trying to be understanding of the disability part of it (why teeth/shirt were a big deal) while at the same time forming his character (sorry, little dude, but you really do have to start the day with clean teeth and a clean shirt, just like any other day, and having a fit is NOT going to get you out of it).

Btw, if anyone's interested, he did finally brush his teeth (doubled checked by mom) though it was a while before he got around to it, and we later compromised on the shirt (as in, I found a favorite shirt instead of the ordinary one I initially suggested, and he decided that he could deal with changing shirts after all. Some battles are worth fighting--'thou shalt put on a clean shirt because that one's skanky'--and some aren't--'I don't care WHAT shirt, just so long as it's CLEAN!')

Anyway, the root of Jman's problem today WAS an autism thing, but what he did with that problem was a character thing. Together, we were able to work through both, and now all is right with the world. It sure can be hard to tweak it all out sometimes though!

Pam

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[SkateLeft]

I think this is the hardest thing for me to figure out about all this! When my little guy acts out, how much is normal 2yo stuff and how much is his ASD/SPD stuff? My OT has been really helpful in helping me figure out what you just said, that we can try to address the underlying cause, but we can't let the character formation slack either. So it's a matter of "No, you can't bite the seams of my pants! You can bite your tubing instead!" :glare: It's exhausting sometimes to find the balance though, especially with the receptive language delays. I can't often redirect or explain things to him. My only frame of reference for "normal 2yo" is my older kids, and they were very mellow, normal 2yos!!

 

Please tell me it gets easier! :001_huh:

[JamBerry]

It gets easier! :)

Fwiw, my now 9yo son still has serious language delays, so I can't explain/reason with him verbally well either, but he's come a LONG way in learning how to communicate with us (both receptively and expressively) non-verbally (reading faces and body language and voice tone and such things). That has helped a lot, but it does take time. And his language is continuing to develop, but slowly.

Back to the original question--how to help the siblings deal with it all--I think that's a big part of it too. Just like we have a hard time distinguishing what is bad behavior/character from what is truly a current limitation/disability is even harder for them. I try to help my NT 11yo understand and see the differences, not just in my ASD son, but in all people sometimes. It's challenging trying to be supportive, but not over-compensate; to scaffold for success, but still set limits; to recognize when it's time to stop vs time to push it. But it does usually get better! For both you and the kids (all of them). Sometimes, just pointing out to my NT ds when *I* am overwhelmed and can't process one more input at the time, and then taking that opportunity to point out that the same is often true for him or for his ASD brother, but just that there are different thresholds of how much each of us can take in and deal with at a given time, helps him (and me!) be more patient with each other. Then we work on all of us reading each other's body language so we can pick up on it without having to be TOLD! :)

Pam

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[SkateLeft]

Thank you so much!! If I could give you all multiple rep, I would!! (It keeps telling me I need to spread it around more! lol)

 

This thread was a big help! :grouphug:

[tonygirl]

I think this is the hardest thing for me to figure out about all this! When my little guy acts out, how much is normal 2yo stuff and how much is his ASD/SPD stuff? My OT has been really helpful in helping me figure out what you just said, that we can try to address the underlying cause, but we can't let the character formation slack either. So it's a matter of "No, you can't bite the seams of my pants! You can bite your tubing instead!" :glare: It's exhausting sometimes to find the balance though, especially with the receptive language delays. I can't often redirect or explain things to him. My only frame of reference for "normal 2yo" is my older kids, and they were very mellow, normal 2yos!!

 

Please tell me it gets easier! :001_huh:

This is totally my opinion and how I see it on a very personal and sadly becoming experienced level but for my family not saying anyone elses:)

I CAN NOT separate the autism and NT behavior for us here it is so intertwined that it is part of who they are. Sadly to say if I took away the autism I would be taking away part of my kids parts

I LOVE & parts I HATE! I won't get into a debate about a person having autism vs being autistic. For me personally autism is a part of them not something they. I didn't mean to offend anyone if I did I am sorry!

As far as yr issues you've shared I AM SO THERE! It's hard redirect when they can't understand you or worse you can't understand them. I completely agree about molding the character the trick I haven't figured out yet is making it understandable to them.

I am trying to help the kids understand each other the older ones sorta kinda get it but not really.

I explain to them that the reason this happened... is because your brother thinks differently and understands differently then we do. But yr are right what he did was WRONG. I try so very hard to validate their feelings, but I have my moments to :willy_nilly: I just have to take each fight (theres alot) 1 at a time and TOTAL CHERISH the times when you see there complete love for one another (there are lots of those too) :001_wub: Oh by the way from my experience ALOT is Sensory related in some odd noway of me understanding way! Teresa