I'm not going to miss this. I'm not going to miss the screaming, i am not going to miss the extreme freaking out over little things. I am not going to miss the persistence on trying to get something so simple, like drinking out of a cup, to be accomplished. I'm not going to miss the feeling like i am going to go crazy. I am not going to miss stepping outside the house and having my son screaming because he doesn't want to go outside but he doesn't like to be more than 20 feet away from me. I'm not going to miss telling him for the 100th time that week that i am not going anywhere and i will just be in the yard and he has the choice to be inside or outside, but he doesn't need to make everybody miserable in the process because of the screaming. I'm not going to miss screaming.. PERIOD. You see... when one has a child who is non-verbal and has HIGH sensory issues .. one hears A LOT of screaming... A LOT of freaking out. I can't tell you how many times a day i say " stay calm, get self control, relax, breath, try again". Some days are wonderful and fabulous and i have the patience of a saint and unending love to give and the squeals and screams do not phase me. Other days i feel like if i hear just one more scream.. even a happy one.. i will need to be committed to a mental institution.
*edit... i had some rant about how having a special needs kid is so much harder then a nuerotypical child and how parents who do not have special needs kids have no idea how hard having a special needs kid is.. but i think i may be offensive , i'm feeling fiesty.. so i took it down. :)
One thing with having a special needs child is that the little things, and the little accomplishments mean so much more... but the lows are oh so low. And the weariness is so... weary. And the heartaches just ache. And you wonder more, and worry more, and think maybe this would be better, or that would be better. You cry out to God and ask "WHY ME?" and people say " Because God knew you could handle it.." THANKS... SO i guess that makes me a flipping amazing parent and you a crappy one who can only handle a "normal" child. HA! You know i really don't say that... but sometimes I think it.
I thank God that my youngest son does not have issues... without him our home would be depressing. Honestly. It sounds terrible, but there is the truth.
Oh i wouldn't give my children away... would i change them? Well that's a hard question. I have grown SO MUCH from having to deal with special needs and having to view the world differently for them. I think they have a lot to teach and give to the world...But yes, i would give them better gifts with communication and more tolerance to the world around them that seems to set them off. I would trade the screaming.. yep... i would trade it any day... and i would NOT miss it.
As i type this Daniel is happy screaming... and i love him... but my ears hurt from the pitch. It's so high... And every time he screams like that i really hope that he does not do it when he is a teenager. And i REALLY hope he can learn to self calm himself when he gets bigger.. because i can't imagine a 150 pound kid freaking out running around in circles and screaming because something isn't perfectly the way he wants it. Each year he calms more, but he does have a long way to go. sigh.
This isn't a pity post. It's just an honest, this is how i feel and this is my life, post. Because ...honestly... I'm not going to miss this...
3 comments:
I understand this...and the "normal" kid "God gave you this" thing makes me mad too...because they are trying to make you feel better but they have no idea. No idea. Sometimes you just have to vent it out. I wrote very similar posts like this back in the day...there are still the odd ones- but our meltdowns have cut down 3/4. I remember thinking maybe one of our children may have to be committed if it kept going on and overpowering me...it did't though. Year by year we got the right aid we needed and learned calming techniques. steps forward and backwards. I can't say what it will be like for Daniel and I can not imagine dealing with that at older ages- it is so tough regardless...but I have hope for you that it will slowly come. Until then though I acknowledge that we simply have to rise again and grow strength and also allow our weakness. For me - I am also sensory sensitive so to not feel guilty for cringing or needing silence at times and finding the moments to have that...even if it means my hubby has to deal with a screaming child for half an hour as I drive away. It comes with some compromises. At the same time I can't always do that when I need to...I know...I have one that is more "normal" and sometimes I think..Wow this is a breeze. It has its tough moments but this is why those families can do so much and why they give me advice on 'oh it's just a stage' or something...because it really is incomprehensible unless you have traversed it in some form. Not that it is all bad either because some things that comes from special needs are fabulous but others not at all. I really understand this and I hope I did not make it worse. My brain is muddled and I need to sleep...I hope you can decipher that basically I understand every sentiment and do not judge any place you are at nor your love for your family . I could not do it for long periods. The screaming years almost did me in. So I feel for you so much. it CAN get better at times but please take breaks for yourself too and find someone who can at least be safe to stay with the kiddos awhile or something...I know it is hard but so needed at times:)
Love to you. You are an amazing mother and wife and friend. You have it in you to keep going:) I admire your honesty and struggle
Kristin, I cannot even imagine how you do it. When I catch a glimpse of how challenging your days are, it silences all my complaints about my own challenges. You are amazing. I truly admire you so much!
But more than that, when I hear of your great love for your children, despite every incredibly difficult challenge, I am in awe of God. That He can empower you with such supernatural love.
As I was typing this out, I was remembering a scene from The Great Divorce by C. S. Lewis. Have you read it? There is a great scene in which there is this beautiful, huge parade. And the bystander wonders, who is this great person whom the Lord so delights to honor? "Susan Green," he is told. From some little part of London, I think it was. Somebody who nobody knew about while she was on earth. But in heaven... oh, in heaven! Where God honors those who are faithful to Him in all the smallest, hardest things!... there, she was honored.
I think you will be one of those women who receives honor like that.
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