"How does Sabrina feel about your having a blog called Love That Max?" a blogger friend recently asked me. My heart lurched. Nobody had ever asked me that (not that I haven't thought about it). "Well, she isn't yet aware that I blog about Max," I said, and left it at that. And then I kept thinking about the question for the rest of the day.
Sabrina may not yet be clued into the blog, but she is very aware of the fact that Max gets extra attention, and she's always trying to get in on it. For one, she likes to crash his therapy sessions at home. I don't blame her—they're a blast! Max and the therapist hang, toss back a few brews, play air guitar. OK, that's not what happens at sessions. They drink wine. Anyway, usually it's fine for her to join in, although if Max really needs to concentrate we have to lure her to the basement playroom to get out of his way (he usually does his occupational and speech therapy sessions in his room).
Since we got Max's new purple night brace for his right foot, Sabrina's been coveting it. Like she needs to accessorize or something. Last night, I let her try it on and she clonked around in it and Max thought that was a laugh riot. She is also madly jealous of Max's iPad. She knows that he gets to have one because he uses it for speech purposes, but really, he uses it a lot to watch YouTube clips of car washes. "See?" she'll say. "He's just having fun! I waaaaant an iPad too!"
Sometimes, Sabrina helps care for him. She'll wash him in the bath and shampoo his hair, although she does charge him extra for pedicure services.
On days when they like each other, they do this for fun.
Last week, while Max was away, we gave Sabrina lots and lots of attention, including the all-day Fourth of July celebration. It was her first week at camp, and at night when she came home, we went out for ice-cream and talked about her day. It was a big week for her: For months now, she's been tugging at various teeth and telling me they were loose (they weren't), and then suddenly one really was. It hung in there for a few days and fell out at camp.
Sabrina still pronounces words with "th" as "f" so she keeps saying "MY TOOF FELL OUT! MY TOOF FELL OUT!" Which makes me want to hug her and never let go. Also, she gets these freckles during the summer that another mom described as looking as if someone has sprinkled cinnamon on her cheeks. Yum.
I'd gotten this adorable fabric tooth holder from my friend Megan, mom to Sadie Marie (her Etsy shop will be open again in a few weeks). Sabrina tucked it under her pillow. And then—parent nightmare!—Dave and I both conked out early, and Sabrina woke up earlier than usual. At 6:07 a.m., she marched into our room and said, "The toof fairy didn't come!" I kept my cool and said, "It's too early, she likes to sleep late on weekends." Then we tucked in some money as Sabrina hung out in our bed. She says she is saving up for a convertible. "Will you give Max rides in it?" I asked. "Yes," she said.
When I decide to explain this blog to Sabrina, and I probably will this year, I am hoping she'll understand why it's called Love That Max and mostly about raising him, even though I also write about her. It's tricky, because I've tried to help her see that Max is just like other kids, though he may do things in different ways or take longer to do them. But hel-lo, I have an entire blog dedicated to what it's like to raising a kid with special needs. Still thinking on that one.
Later this month, I'm taking Sabrina to her first workshop at The Sibling Support Project, a national network of programs geared toward brothers and sisters of people with special needs. I think it'll be great for her. Me, I'm planning to ask the workshop leader some questions about getting Sabrina to stick up for Max in front of other kids, something I've struggled with. The other day, Sabrina was at a friend's house and I brought Max to pick her up. Sabrina, her friend and the friend's little sister ran upstairs and locked themselves in a bedroom. "I don't like Max," I heard the friend's little sis say. Sabrina didn't say a word.
Also: I'd love to know how to get them to stop fighting/maiming each other in the back seat of the car, though I'm not sure they can help me there.
It isn't nearly enough, but once every six months or so, my oldest daughter and I have a day that's all about her. She picks where we go, what we do, she gets pretty much completely spoiled for one day, and I have some great alone time with her. Siblings are unsung heroes.
ReplyDeleteOh please let us know how the sibling workshop is! I've been thinking w'll do it eventually but my son is only 6 and most sibling issues up till now have been simply managing little boy vs baby/toddler needs. We've started conversations but haven't run smack into issues - yet. I was picking my son up from camp recently (w/my daughter in tow) & THOUGHT I heard something from two little girls there. I couldn't be sure so I didn't say anything (though I eyeballed them a bit. They looked suspiciously innocent)... I guess it's starting. *sigh*.
ReplyDeleteYou make such a great point about the fact we go out of our way to emphasize that our special needs kids are NOT so different, and are people just like their siblings only...sometimes not. We're not at the stage that our younger picks up on it yet, but I know it's not far away and it will be difficult at times to explain the contradiction to her.
ReplyDeleteI've been wondering about sibling groups, etc for if/when my daughter is old enough to need an outlet. I'm sure it wasn't easy to hear the little sis say that about Max, but I'm guessing it was a fairly young child and Sabrina seems too young herself to facilitate a discussion about why she said that, what words kids can use to express fear of difference, etc. I think that Sabrina will come to it all on her own, mainly from example from you and your husband.
If at any point you figure you how to get them to stop fighting in the back seat of the car let me know! My oldest two pick at each other around their little brother's carseat then blame him. My car sounds like this....
ReplyDeleteChris: Mommy Jake pulled my hair!
Jake: No I didn't Charlie did!
Charlie:(baby babble singing to his toes)
I like the idea of teaching her to stick up for him. It can be hard for my kids to reach out that way, to stick their neck out. With my kids, sometimes it depends if the negative comment is one that could be made against any kid. It's very "in" right now not to like your younger siblings, but if there's a negative action taken, they'd defend him in a flash.
ReplyDeleteIf you get an answer to that back seat thing, please let me know. I've got tone of friends who could use it:)
Question of the century, right? I don't know how I will explain it to our son, either. Bribe him with toys and ice cream? No? Oh, well, new plan then...
ReplyDeleteIt's simply the nature of a mom to go to the child with the most need. Typically, that means you fluctuate from child to child depending on what's going on in your house. But a special needs child has the most need all the time. It's hard.
ReplyDeleteI think I'm a little fortunate in that my big girls are 10 & 13 years older than Lily, their sister with autism. The age gap is a definite advantage and they are more than willing to defend their baby sister when the need arises.
I finally had to let go of feeling guilty about all family outings. I hate to comment with a post link but it's too long to communicate how I quit feeling guilty so read here if you want to.
http://alongcamethebird.blogspot.com/2011/03/finding-balance.html
One thing that has worked wonderfully for us is utilizing a babysitter once a week. My husband and I have a date night but once a month, we take our older daughters along with us while Lily is home with the sitter. We do things they like to do - like see movies or play mini golf, whatever. The point is they get some time alone with just mom and dad.
Ellen, I think you're doing a great job with Sabrina. I'm a frequent Love That Max reader and Sabrina is often a large part of the blog. I feel like I know her as well as I know Max! :) She may not have special needs, but she is no less special!
I can understand your fear of how she'll react. If Noah sees me writing more about Addison (he knows I blog, but it's generally about both of them. Sometimes one more than the other!) or putting pictures of JUST her on Facebook, he will whine a little. I think that is fairly Normal sibling rivalry. I don't know how to get him to stick up for her. But I also don't know how to assure that she doesn't feel like a burden to him. I try so hard to keep his life Normal and unaffected by all things Addison. We do a lot of dates together, where we leave Dad home with Addi and go out for lunch or run errands together. And get ice cream, of course! ;)
ReplyDeleteagree with all the above.
ReplyDeletedon't worry about explaining by the way. Like everything else it's drip feed as and when they want to know.
kids are very accepting and just know their sibs for themselves. I have 3 daughters who dote on Ashley and are mega defensive of him.
We take time to do things with each of our kids and take them out in pairs.
We also take time to go out on "dates" without the kids about once a week even if it's only a pub lunch.
Sprinkled cinnamon. So cute. :)
ReplyDeleteWe always emphasize with Meg that we parent each child differently because they are different from each other, each requiring unique parenting like every individual. Not because Jake has special needs but because he's a different person.
ReplyDeleteAnd when we hear the "it's not fair," I often reply that that we strive for balance. That means that she plays soccer, basketball, has Girl Scouts, and lots of friends. Jake has gadgets and musical instruments. And, we get each of them what they need and at times what they want.
We also have date nights where we take her out for some one-on-one time, and once a year we each take her on a small trip just the two of us. Just lately we've added times where the two of us have a "date" with her, but those are only once or twice a year. (And, we have grown-up dates to which are vital to our marriage.)
We encourage all of our friends, dads and moms, (regardless of having kids with SN) to have dates with their kids. I can't begin to tell you how important it has been for our communication and Meg self-esteem.
This summer we're going to try to do the same for Jakey. He is often happiest at home but we have a few destinations in mind that he might find fun. If not, we'll play a bit and head home.
We're fortunate that our kids seldom fight since Jakey doesn't engage with others much, and when they do, it's mostly one-sided, Meg yelling at Jakey ro coming to me because he took something (electronic, usually) from her room.
Oh, they're 11, almost 12, and 10 (Jakey). We'll have to see how Finn fits into the mix; for now, at 2 he receives plenty of attention. :)
Why not change the name of the blog to something like lovein the kids or the Adventures of max and sabina so she gets in on the action
ReplyDeleteMaybe change the name of the blog to "Love that Max and Sabrina", or maybe just "Max and Sabrina". That might help. We only have our son, so I don't really know your struggle.Max's CP must add another layer to their sibling rivalry.
ReplyDeleteAs an older sister to a boy with CP, I want to put your mind at ease. Right now Sabrina is young and doesn't realize all of the grownup stuff about why Max gets the "cool" stuff, but she will. She will also learn to stick up for him. I suspect that she heard that little girl say that about her brother, and she was both shocked and saddened, but really did not know how to reply. Sometimes, as siblings we just can’t find the words. We are just as protective, but we don’t have the skills to respond. I am 20 years old, and when a neighbor of my grandparents came up to Josh and I, and asked "Is that the Cerebral Palsy boy," I wanted to cry and scream and tell him to shut up--but I did not. I did not have the words, and he was like 87 years old.
ReplyDeleteI also think it is important that Sabrina not get wound up by SOME of that. She is going to have to go through middle school and high school and hear jokes about "retards" and "short buses" and it will break her heart, and there will be times where she can and SHOULD say something, but there are also going to be times where doing so would only make it worse. 13 year old boys are the worst at this, "Oh, the word retard hurts you? Retard! Retard!" When I was in school I’d stand up and stop bullying, but I would not always respond to cruel words. You should discuss bullying with Sabrina, and let her know that the best way to stop a bully, is to stand up to them.
Maybe you could say something to that little girls mother, because THAT is where it starts. Sabrina is not going to say cruel things about other kids because you expect her not too. You’ve had conversations about how people are different but they still matter. I am going to assume that this little girl is a nice and kind girl (and that her mother wants her to be) but that she just has not been exposed to different sorts of people, and she needs a parental discussion.
Um, the fighting and maiming is the number 1 sign that Max is a normal kid with a normal healthy sibling relationship. Sorry. LOL
ReplyDeleteI've heard great things re Sibling Support Project. The sib issues I find really tough. I asked my kids if they wanted to go to a sib panel we were holding here where sibs talked about their experiences but they didn't want to. I feel like a lot is left unsaid, and sometimes that's because it's too painful for me to start the conversation.
ReplyDeleteEllen -- did you want to chime in re your experience with AAC on this BLOOM blog?
http://bloom-parentingkidswithdisabilities.blogspot.com/2011/07/choosing-carters-voice-device.html
Cheers, Louise
Couldn't resist making one more comment -
ReplyDeleteAnde - You are wise beyond your years! Thank you for your words to all of us parents who worry that our "typical" kids are often over-shadowed by their special needs siblings. You give us hope! :)
Ellen,
ReplyDeleteSabrina and Max are wonderful!!
I'm really happy that you are going to spend some time focusing on getting Sabrina to stick up for Max. I'll tell you why.
I don't have a disability per se. I was born with a cleft lip. However it wasn't severe and having been born in a Carribbean country before I moved to Canada with my parents, they never thought of cosmetic surgery.
Growing up, occassionally kids would make fun of me. Often my younger sister was around during these incidents and she never once stood up for me. In fact she often joined with others to make fun of me. Not neccessary because of my cleft lip, but because I was "geeky" or "not cool"
Once when I was a teen I remember her telling me that one of her friends said that I was pretty. But then she said that she had told them about my cleft lip. As if to take what that person said away. Those things have always stayed with me. I never complained about them for fear of upsetting my parents but nevertheless it hurt.
I'm not suggesting that Sabrina is doing what my sister did or that she is insensitive to what Max is going through.
I'm just saying that that my own parents were sort of in denial and never talked to my sister about the fact that I may be a little different and that there was nothing wrong with that.
I think it's great that you recognize this and that you think that it's something worthwile to pursue with Sabrina. I have my own little girl and want to teach her to be sensitive to these issues and really stand up for kids when she see's they are being excluded or being made fun of.
Sabrina is a great girl and I love reading about both her and Max.
I'm curious, with the girls locking themselves in the room, does she not like Max just because he's a boy? Only you'd know, obviously I don't know them. But I've seen that from boys/girls without special needs as well.
ReplyDeleteSpeaking of which, if you find out how to get them to stop fighting in the back seat of the car, Please please please blog it! :D This is something I need to know for my two girls!
Ande and Always on the clock, your voices are so welcome here. Very reassuring (and illuminating). Thank you.
ReplyDeletekrlr, I will definitely share what happens in the SIb Shop.
Louise, left a comment!
jtj/AZ, just can't change the blog name, it's just too far along, but today I decided that I'm going to either start a private blog only family can see about Sabrina, or do a Love That Sabrina section on this blog.
Siobhan, you're right, sometimes it's just an "Ewwww, boys are icky!" thing but this little girl has made remarks before about being "scared" of Max. I wish the mother would say something. Ande, you are right, it starts with the parents.
Everyone: I will be sure to let you know if and when I ever figure out how to tame the back seat fighting, and you be sure to tell ME! Hiring a referee to sit between them would be a tad bit costly.
the ipad thing is a huge problem here! zack, my td kid is obsessed with this injustice, especially since benjamin uses the ipad primarily for leisure. so i end up letting him zack either have his own turn on the ipad, or play on the computer to compensate. overall he ends up having WAY more screen time than i'd like and it drives me crazy. also planning on doing the sibshop at some point. hope it goes well!
ReplyDeleteellen you can keep the website adress but have a different title
ReplyDeleteI am mother to four. My eldest died a few years ago as a result of his disability.
ReplyDeleteFor the little girl that 'doesn't like' Max, I would talk to her mother. If she is younger than your daughter, than her fear, while certainly not a good thing, is something understandable. Max is different. Does things she doesn't understand. I would let her mom know what you heard. Then, if mom doesn't know what to say to the child, you could speak to her. 'Introduce' her to max explain why he does certain things. Perhaps you could work on a brief 'story' on max.
For instance. My son, amongst other things, was born without his left arm below the elbo. He barely notices it. When he was young, children just didn't know how to react. So, I would have them come over, ask questions, look at his arm.
As for your daughter. Some of it seems to be pure sibling rivealry.
While you should encourage her to stand up for max, you might want to begin it by finding out if she has been made fun of. My eldest caused my other children to be made fun of.
How do kids react to her? Has she lost friends? Do people not want to be her friend?
Discovering how it affects her is most important here. If she is scared to stand up, because she might lose a friend. Or if she has been teased, it can explain a great deal. Before focusing on how she can 'stand up' for max, you need to help her stand up for herself.... For in doing so she does, actually, stand up for max!(hope that made sense)
When she becomes comfortable with standing up for herself, then you can slowly change the focus to max. And how max is a part of her. Of who she is.
Right now, all the focus needs to be on her.
Perhaps you could have her do a special project, or get her something to learn for only the times max has OT and speech. For instance get a one of those KLUTZ books where she can learn something like making friendship bracelets. Or, let her play a game. But only pull out that thing during that time. That way, she can look forward to doing something 'special' while he is engaged.
As for the ipad, I would look to see if there is any game/program that she can interact with max on. That they can play/use together. Or something she can help with.
Remeber, before she can advocate for max, she needs to advocate for herself. Learning that will make the next step almost natural!
A thought--you might want to put together a bolg(private or not) where sabrina helps you with the entries. Does she have a topic she likes to obsess over? Perhaps her own 'daily' blog about her days. Have her take photos and post them?
ReplyDeleteAnything! The joint work of writing would be a great connection.
Wonderful post! It's quite clear that both of your children are much loved by their mama--and I'm sure that the effervescent Sabrina with that amazing sprinkle of cinnamon freckles knows that!
ReplyDeleteI don't know much about this. I do know some kids will be mean just because they can. But some kids won't. I was in an inclusion class in Elementary and I loved helping the kids with special needs. Also as a kid I was TERRIFIED of a friend's older brother. He was neurotypical and not mean at all but to a young me he was scary.
ReplyDeleteGreat post. Love the pic of Sabrina's freckles. She is so cute.
ReplyDeleteHey Sabrina! Congrats on the tooth! Always a big moment :D I don't know how old you are, but I'm 15 :)
ReplyDeleteListen, I'm also a Sib. My sisters and I are triplets (that means 3 babies at once! Crazy!) My sister Rachel has cerebral palsy. Therapy is fun, I know! Join in if you can, but remember they're to help Max so it's also work for him.
Maiming each other in the backseat...good times man haha (Kidding, Ellen, don't read her that part! No tips cause uhhh it still happens)
But Sabrina, one day you are gonna look back and have so. many. memories. Jealously will pass, and even become something to laugh about (i'm not at the laugh part yet, but people tell me it happens). You'll remember the great times you and Max get, and how special your life is because of a special needs kiddo. Don't ever forget that. You'll be protective of him (probably you already are!) and you'll have great stories to tell and giggle over.
I'll end with one of mine :)
When we were about 8, my mom and my teacher were talking after school, and you know when adults talk to each other it gets reallllyyy boring. So we started playing racecar. Rachel is in a wheelchair, so I took the handles and started running up and down the hallways with all kinds of great car sound-effects. Then, I jumped on the back like I always had and...we tipped over! Rachel's legs stuck straight up in the air, as her wheels slid away and she landed flat on her back. A teacher saw us fall and helped her up. We were so worried she was hurt, but Rachel just LAUGHED and LAUGHED. the look on her face said it all "Don't worry about me, I'm fine. Boy my sister's a dingbat!" :D
Sorry for such a lengthy post, but I just wanted to reach out, one sib to another.
Emily
PS to your mom: It'll be just fine! One-on-one attention is great.
I think there's nothing you can do about the backseat thing. My brother & I had a battleground there well into the teen years & no special needs treatment there. He was 6'3" & wasn't keen on sharing leg room. What can an average height younger sister do? My mom had one mean reach behind pinch though.
ReplyDeleteMaybe for the iPad, have a folder of stuff for her, that she can use when Max unhands it for brief periods. On our iPad, which we got for our son, we have a folder of his stuff, so that he can't accidentally click on stuff that he might mistakenly mess up. He's a lot younger than Max though.
I had another thought too - but it's gone.