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4.25.2010

COMING TO TERMS...

It's been a bit of a hard week this past week. I knew Cole's evaluation for his developement (through the Early Intervention Program) was coming up. Looking back 8 months ago (when his seizures started) I knew he hadn't made a TON of progress as far as his "developement"...except for walking (which we are still super proud of him for!!) Things that Cole has learned have come & gone (ie. signlanguage, pointing, waving, saying "mama" or "dada", picking up food etc.) It's hard looking back & watching videos of him at 7 Months Old waving to me or babaling "mama" and I so BADLY want to know that little guy again. Yes, he is still the same SWEET, LOVING, HAPPY baby...but in ALL REALITY he's VERY different. That 7 Month Old Baby is just a memory to me that I will keep close FOREVER...

I am having a HARD TIME (though I keep a good "frount" on & I look like I've got it together at work, church, etc.) coming to terms that he may never "catch up" & he may always "struggle". But, miracles do happen. They happen all the time. (Don't get me wrong...I LOVE this little boy more then I could ever imagine or express either way & I think that's why this is so hard for me to deal with) I've gone through ALL the stages of HOW COULD THIS HAPPEN!!! TO WHY IS THIS HAPPENING??? TO I JUST DON'T UNDERSTAND!?!...ECT...ECT. I've accepted the seizures (though it still seems like a foggy dream that I am in & I am lucky I know what day it is).

Now, I need to accept the fact that he is VERY behind in his developement & he may not be able to ever do things other kids will/can do. I talked to his Physical Thereapist...He dosn't have Autisim...but, he DOES have AUTISTIC characteristics & SEIZURES. Obiously we don't know if he will ever come out of either of them...but, we can HOPE & PRAY. I know Cole's "miracle" will happen...I just need to remember that it may not come in this life. I KNOW with out a doubt that HE WILL be made Perfect.

So, with that said...I would love to hear from ANYONE & EVERYONE...how to cope...either an experience you have had, someone you know has had or just advice.

HERE ARE THE RESULTS ON HIS DEVELOPEMENT:
(HE IS CURRENTLY 18 MONTHS OLD)

-SENSORY ORGANIZATION: NO CONCERNS
-THINKING & LEARNING/COGNITIVE: SEVERE (8-10 MONTH RANGE)
-RECEPTIVE LANGUAGE/COMMUNICATION: SEVERE (8-10 MONTH RANGE)
-EXPRESSIVE LANUAGE/COMMUNICATION: SEVERE (9-11 MONTH RANGE)
-GROSS MOTOR: MODERATE (12-14 MONTH RANGE)
-FINE MOTOR: MODERATE (12-14 MONTH RANGE) *has regressed since eval & is severe
-SOCIAL/EMOTIONAL: SEVERE (11-13 MONTH RANGE)
-SELF HELP: MODERATE (12-14 MONTH RANGE) *has regressed since eval & is severe

*ALL AREA'S ARE NOW SEVERE EXCEPT GROSS MOTOR*

6 comments:

  1. This may sound counter-intuitive, but when Cole is older, you may want to consider getting him "diagnosed" with autism (even though it's not completely accurate because it is due to his epilepsy) because he'll get much better services from his school district. I am sure Margo can talk to you about this.

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  2. I don't have any experiences or know of anyone, but what I do know is to just trust Heavenly Father. Whatever you go through and however you feel, our Brother has gone through as well and knows exactly every feeling we have. Go to Him, pour your heart out, but mostly, rely on Him and you'll be fine. Don't worry about anyone else or where Cole is supposed to be. Just keep praying for PROGRESS. You are such an AWESOME mommy. You care about that kid so much. Heavenly Father gave you Cole because He knows you're strong enough to help him in only the way that YOU can. I love ya girl. Hang in there!

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  3. Phew, coming to terms is a hard one. I'm not there yet. I know we're so lucky that our daughter is doing as much as she is, but I still have a very, very hard time with her delays. BUT, the only time I find it hard is when we have evaluations. These things....they kill me. When we're at home I celebrate everything she learns and I'm amazed by how well she's doing. When we go in to see her therapists or have a formal evaluation I get depressed and worry constantly.

    I try to think about how I would feel about Katie's progress if we lived in the middle no nowhere with no therapists or peers around. Sounds odd, I know, but somehow it makes it better for me....no measures, no standards, no pressure.

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  4. Sometimes I look forward to Cole and I having perfect bodies. All I can say is to keep having faith because we definitely know that we are not in charge. (I have a lot of questions to ask once I get to the other side). Having someone with special needs in your family is hard on everyone, but I think especially the mom-because she is the one who has to deal with it 24/7. You are strong S, just know that you are not alone and can call us anytime you want to scream, vent, cry or all three! (it helps). We can still have hopes and dreams for our boys, but keep rooted in reality and be okay if they are not going to be able to achieve everything that WE want for them. Whatever is supposed to happen, will. (at least that's what I tell myself)

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  5. Sarah, you are not alone. We have been through exactly the same thing with our baby. He can do very little that other babies his age do, and sometimes it just rips my heart in two. I remember what he was like before he regressed--so happy, smiling, laughing, interactive, rolling over, interested in toys--and I want so badly to see that boy again. Our feelings for our children are the most tender feelings a person can have, and that's right where the knife goes. We love our babies and wouldn't trade them for any others, and we are sad that they are not reaching their full potential and may not ever.

    These are real losses and they are overwhelming. You never have to pretend like it doesn't hurt. You need to grieve. That is the only way to come to terms and move forward. I have found seeing a counselor or therapist extremely helpful. Do you know of someone you can see? Around here there is a nonprofit that has free counseling for parents of special needs kids. Maybe there is something like that in Utah. Please give me a call if you need or want to talk about this or if I can help in any way.

    Do you have a copy of Cole's baby blessing? Maybe it would help you to read it. We are praying for you guys.

    Love,
    Ashley

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  6. I cannot even begin to understand what you guys are going through. I see how hard it is for you to cope on a daily basis and I am sure that I am only seeing the surface of your struggles. I just want you to know that our prayers are truly with you and with Cole's development and recover. I want you know that we are always here for you for support and love. We can only hope that he will recover in this life and if not that you guys will be able to cope with the hand you have been dealt. I truly believe that you are doing the right thing for Cole even though it is clearly the harder path. Keep up the good work and keep fighting, it will pay off one way or another in the future.

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