Friday, February 17, 2012

The stressful life of an older micro preemie

The mornings go something like this....
Wake up at 5 am to enjoy a little bit of me/quiet time. Wake the kids up for school....wake them up again...and finally one more time did the trick! I make sure the kids put their clothes, socks, shoes, backpacks with all homework in it, and anything else they need, out the night before. This usually means that I am running around like a crazy mom trying to find one thing or another in the mornings. They are finally up...all 6 kids, that is everyone is up except for Kenny whom I try to let sleep as long as possible because I know when he gets up, the morning...the tranquil for the most part morning will be totally interrupted.
uh-oh...he's up! Darn...this is waaaay to early for him to get up! I have to iron some pants and a shirt or two, look for Kayleighs missing school shoe, break up an argument between sydnie and Morgan, sign a few papers that were given to me last minute...because my kids just...well...forgot to give them to me.
ok, all is ok...he's got his bottle of pediasure and his "taggies" which are the pajamas with the snap over flap covering the zipper...yes, he's the only kid I know that has always loved this taggies! I have to make sure he has his clothes out for preschool, especially his shoes. Oh the shoes...his biggest obsession! He HAS to have them on as soon as he wakes up in the morning or he flips out. It has since gotten much worse of an obsession as to now he is obsessed with making sure I have my shoes on and Gina has her shoes on. When I tell him no, all he** breaks loose! The quiet setting has turned into the worst stress scene you've ever seen! The screaming at the top of his lungs...and it's a high pitched scream...followed by the occasional head banging, removal of his shoes (which are then thrown), his socks go next and finally his shirt and pants! He has tried to remove his diaper but I've caught him before that point. If he'd of had his hearing aids in, those would be taken apart and thrown all over the house where we'd have to search for them for hours!
These breakdowns just don't happen here at home in the mornings...Nope, they happen all day long here, it happens at the grocery store, church, basketball games, restaurants, etc...they have made me/us a prisoner of my own home! I though RSV season was bad...this is by far the worse thing I've had to deal with. We've tried time outs on the couch, a smack on the hand, ignoring and several other discipline ideas...the thing is, he knows some things, but still developmentally delayed as to not understanding everything.
I am lost, down and extremely discouraged about this...and it's just getting worse! I've put calls onto his neurologist, his comprehensive care docs, and also his autism worker that is working with us with the P.L.A.Y. Project...I'm just feeling broken right now. I guess this is what the doctors have warned me about...and I never thought he'd be like this. I feel so bad because I'm trying to do the right thing but I don't know what it is. His OCD had gotten so bad and I'm scared.
Are there any other mom/dads/guardians out there that have had an older micro preemie going through this PLEASE help me. My heart hurts for him, my stress level is well beyond my limit and I just need encouragement that this is fixable.


Erin said...

No advice but lots of hugs and prayers!!! You ARE strong!

mpence said...

Have you heard of nearodevelopmental therapy? It is a program designed to re-route the brain and form better foundational brain patterns to increase function. It is a program not for the faint of heart, as it takes about 4 hours a day for us (each program is different, and uniquely design to help with a child's specific needs)...but we haev seen PHENOMINAL results from it with my 4 and 6 year old preemies! (Though they were much later than Kenny being 30 and 32 weekers, and do not have the extensive issues he has, I would think NDT would still be able to help him a great deal.)

They are able to help with all sorts of conditions from cp to autism to prematurity and developmental delays, to learning disabilities, to downs syndrom, and much more!

We go through Cyndi Ringoen, who has a lot of great info on her CAN-Do site if you are interested in learning more about it. And she may know of someone in your area.

Good luck to you. (((((HUGS))))) Hang in there.

Anonymous said...

Do the meltdowns happen at school?Perhaps his teacher could suggest something to help.

Dawn said...

You are doing everything right, in fact you are putting more of yourself into raising your family than most parents do! God bless you! Keep doing what you feel you need to do. Answers and solutions will come in time. Hang in there!

I have a former 23-weeker too! She is going to be 12 in two weeks! We have other challenges, but we wouldn't make any progress if I wasn't following my instincts, reaching out for help when needed, and praying for God continued blessings of strength, wisdom and guidance. I will pray that for you!

Anonymous said...

Hi. Is there a way to contact you directly? E-mail perhaps? I have a former 23-weeker who is now nine (my old baby) and has EXTREMELY challenging also blind and nonverbal. say the least...but he's my superhero.. Anyway, would love to connect somehow.