"What do you want?" I ask. But he doesn't answer. He can't tell me. And he doesn't know why I can't understand.
My insides grow cold and I want to cry, but I've used up all of my tears and have none to spare. I'm dead inside at this moment, my eyes drifting out the window so that I can pretend that I'm somewhere else. Anywhere, but here in this moment, watching my child hurt himself.
I try to understand, solve the puzzle of his anger. "This isn't what you wanted for lunch?" I ask. And yet, I know how he feels. I want to punch holes in the walls and slam my head against the table. The rage visits me too. Because he can't tell me. And I can't understand.
***
I wrote this this afternoon after a really difficult lunch with Elijah. Tonight, I went to a local event featuring a speech pathologist named Teri Kaminski-Peterson, author of The Big Book of Exclamations. She said some things I've heard before, gave me some new ideas, and most of all, reminded me that there's no such thing as false hope. There's just hope.
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8 comments:
Lisa, I just said a prayer for you all.
Becky B
Ah, Lisa....I'm crying now, too! It is hard. Elijah is such a sweetie. And how frustrating it must be for him not to be able to communicate. It's a human element that we need. I'm glad you have new ideas. We love you and Elijah and Andy. MomGramKat
Lisa, we send our love and prayers. You both are such wonderful and patient parents. ~Kari K.
We know how you feel. We sometimes call it "boy aggression" and Nathan will run around and toss Zach around hoping to get some to the aggression out.
I do think when it is around food it is them being a "typical" 2 year old. I watch my friends kiddos and they do the same thing when they are throwing a fit they just might throw some actual words in there. I've seen "typical" 2 years olds throw such a fit around food that all they do is scream just like our kiddos.
My mom keeps telling me that its my payback because I threw such HUGE fits because of food when I was young.
If you get any really good ideas on what to do besides time out please let me know.
Renee
Sounds like most lunches and dinners with LilB. The biting drives me nuts. Sometimes he just bites his own teeth. Not grind, mind you, CHOMPS his own teeth. Worst noise ever.
Again, I'm glad you posted this. Makes me feel normal when I just walk away and bury my head under a pillow.
One thing I had another mama recommend to me, for the biting, is those wrist bands you can get at sports stores. I don't like to encourage biting, but LilB has bruised his hand so much! It seems to help a little. We only just started with it, though
I had the opportunity to stay with Elijah last night when Lisa went to the meeting. I know Lisa had much trepidation thinking about leaving her Dad home alone with Elijah. Like for example, I have never changed a diaper for him. Not proud of that, but there was always someone around to do that.
Lisa left me a list: Bath, Pajamas, Milk, brush teeth, read book, say prayers, then bed.
So, bath went ok, well, he wasn't totally happy how I rinsed his hair. (But, I have to say, it sure smelled good afterward.) Then the diaper, wants up? or down? but I figured it out. I was worried it would leak. Anyhow, then milk with a zippy cup. (We are hoping someday Elijah will understand the handles, and he will). But he won't drink, until I realized (with my older eyes) that their is a plastic cover on top. I started laughing, telling Elijah I was sorry I couldn't figure that out. Then he started laughing at Grandpa, and then I laughed more at him and we had quite a laughing session. It was great. Anyhow, he went to bed and we had "no issues".
Lisa got back earlier then she thought. She said the lecture went short, but was she secretly worried? I believe she was very pleased how well we had done.
Most children are 24/7 job, but I believe a special needs child is a 30/7 job. Unless you walk in the Mom's shoes (And for the most part, it is the Mom, you won't completely understand.)So many things most parents take completely for granted, the special needs Mom & Dad have their own learning curve.
Elijah is a joy. His smile can melt butter. I consider it a complete priviledge to be his Grandpa. And Elijah is fortunate that he has 3 more Grandparents that feel the same way.
I took it upon myself to change a
2nd diaper with a #2 this morning.
Lisa was impressed and I think she will let me child sit again.
Lisa, you are a great Mom and thanks for letting me share the time with you and Elijah.
(Elijah's Dad had to work, that is why I had the chance.)
Love Grandpa Dennis
Lisa, I know how you feel. Chloe has the same sort of seemingly uncontrollable fits. She will get mad, and then try to scream so hard that she can't even breathe. these spells are followed by seizures. After she comes out of the seizure, she passes out for a few seconds, and then awakens just long enough to look at me like, "mama, how can you let this happen to me?" then she'll fall asleep. That was her typical bedtime routine for around six months following her first birthday, and it still happens occasionally.
All I can say is, hang in there. I watch my daughter have seizures when she gets mad, and it kills me that I can't do anything about it or prevent it. I hope that you can find the peace and patience you need to help you deal with these times with Elijah. You have been a strong person for your son, and I have followed your story since the beginning. There are so many things you have accomplished as a family, so I know you'll make it through these tough times. Our family will be prayig for you and yours.
Thanks for the prayers and love everybody! Elijah's been particularly difficult recently and I can't figure out what sets him off...Grumpiness leftover from daylight savings time? Getting those two-year molars? Better awareness of what he's eating and I'm not feeding him what he wants? It's just so hard to know!
Becky and Kari - Thanks for the love and prayers. It definitely helps!
Mom - Love you too!
Renee - I wish I had some good ideas for the temper tantrums, but I don't really. What bothers me the most is Elijah's self-biting, which isn't typical. Does Zachary have any self-injurious behavior? I'm always open to ideas too! I'm trying to tell myself that this might be a good thing because Elijah never used to care all that much what we fed him, so it might mean he's tasting more and caring more about what he's eating. You're so right, some of it is definitely typical behavior for a 2 year old. Thanks for that reminder, I'm really not around other 2 year olds that often.
Miss Burb- Isn't the biting the worst?!! I just hate to watch Elijah hurt himself. His hand looks horrendous right now. We ordered a new brace for Eli that would cover his pointer finger (the part of his hand that takes the most abuse), so hopefully that'll help. I should go pick up some of those wrist bands in the meantime (or maybe for his left hand). Thanks for the suggestion and for making me feel normal too. :)
Dad- You crack me up! Pretty impressed that you really can change diapers after all. Now I know and you're not going to get out of it anymore. Hehehe. The lecture was short, but I probably was a little worried too. ;)You did great. Thanks for watching Eli and for spending some time with us today. It was nice.
Amber - my heart breaks for you that you know what this feels like - that hopelessness over watching your child hurt themselves and you can do nothing about it. How are you supposed to parent a child when you can't allow them to get mad? Obviously, temper tantrums can't always be avoided. I hope that you've seen you're last seizure for Chloe. Hang in there Amber. I know how scary seizures are. We'll pray for you and yours as well. P.S. Owen is precious!
Thanks for the comments everybody!
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