Update on Nicky

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
jenandtheboys
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Posts: 1245
Joined: Tue Dec 02, 637332 4:00 am

Re : Update on Nicky

Postby jenandtheboys » Wed Apr 08, 637333 1:36 pm

Aimee,
I was so glad to read your update, and to hear from the perspective of someone who has so much in common with my boys. My oldest is 3 1/2 (named Andrew and I wrote a lot about him on another topic a few days ago), but his situation is similar--sensory integration, developmental delay/disorder, etc. I guess what I mean is that hearing stories like yours gives us hope for our kids' continuing to get the help they need as they get even older and approach school age. We have great therapists now (2 for speech, and OT) and hope to continue to have support and people to look out for his best interest in the educational environment, such as what you found with your "team". Thanks for sharing the inspirational news![:)]


Jennifer, proud mom of:
Andrew Logan, 8/10/2001, 29 weeks, 2 lbs. 15 oz. (PE)
Ethan Hunter, 3/8/2004, 27 weeks, 1 lb. 9 oz. (PE and IUGR)

aimeejane
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Re : Update on Nicky

Postby aimeejane » Sat Feb 21, 637333 9:26 am

Oh, Jenn, here's one back atcha! HUG

I'm so glad I can be an inspiration to you. I have been blessed with the kind of personality that totally rolls with the punches, and I believe that it's so I can say, calmly, "Oh, when that happened with us, blah blah blah." I can be supportive without getting caught up. I hope that doesn't sound like Im tooting my own horn. I used to wonder if I was a bad mom, because I just am SO NOT a worrier. At all. (Heck, when Nicky was in the NICU, I was like, "Oh, I know he'll be fine!" LOL) I've accepted now that it's just my personality (totally from my mom!), and I try to use it.

You and Jai will get through this phase swimmingly. Even if it's not a phase (like it isn't with Nicky), you have options, and you are a strong woman. Being scared isn't weak - it's natural, and a lot of the time, it's smart. That emotion will lead you to look into so many options for Jai, and as you learn to harness it a little, you will gain so much confidence.

You know, there's a chapter in Dr. Phil's weight loss book about what he calls "Right Thinking." He doesn't like the term "Positive Thinking," because it's often unrealistic. Right Thinking is telling yourself the truth in a purely self-supporting light. I'm using it for my weight loss, but you could definitely adapt it for yourself! For instance, whenever I'm tempted to think to myself, "I HATE exercising and don't want to get on that bike," I stop myself in mid-thought, and force myself to think (or, better, say out loud), "I want the results that exercising will bring me," or "I love the way I feel about myself after I exercise." I'm not lying to myself, saying, "Oh, I LOVE to exercise!" Instead, I am being completely truthful, and you know what? For the first time in my life, I am working out 5 days a week, only missing two days when I was really sick.

So, maybe, when you find yourself thinking, "I'm scared, and I don't know the right thing to do for my daughter," you could stop yourself, and say out loud, "I am a loving, devoted mom, and I am doing everything I can to find the right steps for Jai." You may be really surprised with how much that one thing can change your confidence level. Hey! Write it on your bathroom mirror with a dry erase marker. Every few days, change it to a different "Right Thought."

I really hope you find something helpful from this. I can't stand to see a great mom such as you be so down on herself! You ARE strong, and you have the confidence somewhere inside you - you just might have to look a little harder to find it. Okay?

Aimee
Georgia State Coordinator
Moderator - Pregnant Again

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)

jenn
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Re : Update on Nicky

Postby jenn » Fri Jan 16, 637333 10:58 pm

Oh Amiee! Can I just give you the BIGGEST via internet hug ever, Please!?
Feels so good to know I'm not alone!
It was like reading about my lil' pudding pop.
And the "I can't" thing is 100% Jai...I'm almost sick of it...I know she can and she says otherwise.
Thank you so much for being there for me, your an ispiration that I too can survive this phase.
Your so strong and confident, where as I'm terrified and insecure...and that's being nice.
Your an awesome mom, I could learn from ya'.
Wishing you guys the best!!!
Much love, Jenn

Jennie (25)
Shad (29)
Jaidyn (3) @30 wks
Severe PE/HELLP
2lb. 12oz.
Natalia Rosse @38 wks
11.17.04 NO PE!!! (6.6lbs)

http://www.ofoto.com/PhotoView.jsp?&col ... 7779060205

paljane8
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Re : Update on Nicky

Postby paljane8 » Fri Jan 16, 637333 8:55 pm

I am so glad to hear the update. I wish you the very best with transitioning. You have done good, Aimee and you are so positive. Can't wait to hear how it goes next week.

Nancy Eastwood
Moderator

aimeejane
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Joined: Wed Jun 28, 636699 10:55 pm

Update on Nicky

Postby aimeejane » Fri Jan 16, 637333 8:45 pm

Hi! Some of you may remember that I've been worried about Nicky's behavior for some time now, even researching the heck out of ADD, Sensory Integration Disorder, etc. After a pretty difficult fall in school, his preschool teacher recommended taking him for early intervention testing (Jenn! [:p]), and we agreed. We had to do it quickly, since the services available decrease dramatically after a child turns five. (Birthday is March 24.) (If they're brought into the system before their fifth birthday, however, you have all sorts of options.) It was less than two months from my first call to the school until we had his evaluation last week, and that includes getting the files started, a visit to his school from a Behavioral Interventionist, etc.

Here are my notes from the assessment last week:

~~~~~

Nicky's Assessment Summary
Jan. 11, 2005

Cuurent age: 57.5 months

The evaluation went great. The assessment team consisted of our social worker, a diagnostician, a speech therapist, and an occupational therapist. The social worker spent most of her time talking with me, while the other three spent most of their time with Nicky. They watched him play independently for a few minutes, and would pull him to the table for exercises. Each of them also asked me specific questions to help complete their assessments. Following is what I was told about each area:

Cognitive:
Nicky tested at the absolute highest the test would allow him to go. The diagnostician indicated that, if the test was configured to allow it, he would have tested in the superior range. As it was, he was placed at 69 mos.

Speech:
Only one area of concern, the "F" sound. He places his mouth in the same incorrect position for the "F," "V," and "Th" sounds. "V" and "Th" are still not concerning, but "F" should have been achieved by age 4. She demonstrated the proper technique, which he was eager to emulate. She offered an at-home program to me to help him, which I declined, based on the quickness and eagerness with which he corrected his "L" sounds in November/December. I will call and ask for the program if he doesn't show improvement pretty quickly. Receptive and Expressive Language tested at 45/46 months, respectively.

Gross Motor:
Well within normal parameters. He can do more than he thinks he can. He even skipped! ("I can't" is a very large part of his vocabulary, and he usually refuses to try things that he doesn’t know 100% that he can do correctly.)

Fine Motor:
They gave him three separate assessments to make sure, but he does fall within normal parameters. They are still concerned, as his hand strength is lacking, and it is having an effect on his writing, cutting, and self-help skills.

Adaptive/Self-Help:
This is an area of concern with him, although he would not officially be eligible based on his performance in this area. Similar to Fine Motor in their concerns. 41 mos.

Personal-Social:
This is the area which will qualify Nicky for services. The VABS test that was used placed him at 28 months. The social worker indicated that this is higher than he actually is, since one of the three sections of the test (community) pulled the score up from the other two (domestic and...can't remember the other one). This is not a surprise to any of us, I'm sure!

So, this Friday, Jan. 14, I have Nicky's eligibility meeting. The purpose of this meeting (per the paperwork I was provided) "is to determine whether your child has a disability and is therefore eligible for special education services." If he is eligible, there will be an additional meeting in the near future to determine his educational placement. It was indicated (informally) to me today that he will probably be given a classification of Significantly Developmentally Delayed, which is used when at least one area is at least 2 standard deviations below "normal," and when there are no other diagnoses present. They all said that there is no diagnosis they can give at this point - that he does exhibit signs of several different issues, including ADD, Sensory Integration Disorder, OCD, etc. However, they said it also might be something as simple as a non-verbal learning disability. There's really no way to tell at this point, but they were careful to point out that it doesn't matter, as long as we are able to help him handle the issues he is dealing with. The social worker told me that her guess (again, unofficial) is that he might be placed in a classroom specifically geared to kids with behavioral disabilities (a small class). However, this won't be determined for certain until the educational placement meeting. I really hope that he might be able to go to that class several days a week and his regular preschool the other days. We shall see.

The assessment team was wonderful. The women were very obviously in-tune with what we, as a family, are going through right now. They complimented me on my approach to a tantrum Nicky exhibited as we were leaving, and when I indicated that I wasn't always that calm, and that shouting matches often occurred, they said, "Of course not, the four of us were here! It's impossible to maintain your cool when you're faced with this on a regular basis. We really do understand." It was a wonderful feeling to be validated in our thoughts that there's something going on that we just aren't qualified to handle by ourselves, and to be reassured that my reaction to the situation is normal.

Our social worker's concern for the family unit was obvious. She took copious notes on our family history, including where Jason and I were raised, how we met, etc., as well as carefully documenting the time encompassing my return to work, pregnancy, bed rest, hospital stay & Kalen’s homecoming. She also asked about Kalen's development and suggested that we keep an eye (or ear, I suppose) on his speech, and to get an early referral if we were at all concerned about it as he approached his third birthday. Her last question for me during the interview process was, "And how do YOU take care of yourself?" Obviously, I'm very satisfied and encouraged by the morning's events, and I look forward to moving this process along. (As does the team...they adjusted their schedules to move his eligibility meeting up a week, saying, "He's waited so long, we'd hate for him to have to wait even another week."

(end of notes)
~~~~

So, we had the eligibility meeting, and he is definitely qualifying for services. We have his IEP meeting on Tuesday, and they indicated that he'll be put in a classroom with other children who are working on behavioral issues. We're very excited about this. My greatest hope at this point is that he learns some self-control and self-expression - enough to allow him to enter a regular Kindergarten class in the fall with some special assistance on the side.

Thanks to you all if you made it through all of that! LOL It's quite the journey - one that we thought had finished two years ago, when Nicky outgrew the infants' early intervention program. We thought he'd caught up at that point. Oh well!

I'll let you know how it goes next Tuesday...

Aimee
Georgia State Coordinator
Moderator - Pregnant Again

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)


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