Preemies who aren't so preemie anymore!

[deerhart]

Wow how has time flied, this forum has been up for a while now and many of our preemies, aren't quite preemies anymore!

I wanted make a post focusing more on what parents of older preemies may be facing as our kids grow out of baby/toddler hood and approach preschool and school age.


I know I for one am dealing with a speech and social delay with my oldest child, plus a barrage of evaluations to rule out PDD and ADD, plus we have entered behavior therapy to try to find ways for us to better disicpline him. We are also watching Mason like a hawk becuase we know that delays tend to run in families and with boys.

It can be a very frustrating and lonely thing to do becuase many times there are no answers and everyone you know has an opinion and likes to share it regardless of whether you want to hear it. Also, people can say very very mean things which make an already harder situation more difficult. We have dropped most of our social life because its easier to stay home then to try to take Alex out most of the time, but it is getting better as he gets older.

Now our focus is taking the next year to get him ready to start kindergarten in the regular class and continuing to improve his speech and social skills.

Erin


Moderator - Parents of Preemies
Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

[aimeejane]

Erin, it's so comforting to know that others are dealing with the behavioral issues. Our doctor won't do anything about possible ADHD until he's in 2nd or 3rd grade - he insists that female teachers are prejudiced against boys' natural behavior, and we thus end up with too many diagnoses in situations where boys are just more energetic. (Just so you know, I do love this ped & had to role my eyes a little at that one, but...) I'm surprised to find myself agreeing with him to an extent...a lot of my friends with boys are dealing with the same issues, and Nicky really has gotten better, but he's still SUCH a BIG BIG handful. I'm so tired of the backtalking, whining, tantrums...

And I'm sick to DEATH of everyone telling me how to parent him. "You just have to be consistent." BS!! That works for most kids, yes, and it's the parenting approach I've taken for the last 4 years, but all this time, and Nicky still thinks that a tantrum will get him his way, even though none of us has EVER given in.

I feel so badly - he and I butt heads almost all day long, and I'm so sad knowing that my "miracle baby" and are at such odds.

Anyway, before I ramble too much, Erin, I just want to say we're in sort of the same boat, so we can attack Kindergarten together! Nicky's caught up in his motor skills, social skills & speech, but the behavioral issues are there. He's starting his 3rd year of preschool this fall (3 days/week last year, 2 days the year before - this year 5 days!!), and I'm looking forward to it. He really thrives on the socialization and routine. I just hope he learns to sit still for more than a video before Kindergarten...

Here's luck to us both!

Aimee
Georgia State Coordinator

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

[deerhart]

Hehe they are a handful aren't they
No one is ready to diagnois Alex with ADD yet, though they say he is exhibitng mild to moderate behaviors consistant with ADD, but they may be a minifestation of his speech delay. Thus, we have to wait until his speech improves to see if things disappear or not. So far we are 1 pedatric neurologist who thinks he might be PDD but it would be so mild its not worth diagnosising and 1 SLP who thinks he has PDD, to us, pyschatrist, pyschologist, and his ped who don't think he is PDD (but our ped wanted some 2nd opnions on it anyways just to cover the basis) Alex and Mason both are lucky they are such cute sweet kids or else they may not have lived long!

The behavior things we have tried is a combination of giving both positive choices and very negative choices (ex: Alex hits his brother and we talk about why he did and what else he could do in that situation like walk away, tell mommy something is wrong, use words not fists, hit Mason over the head with a garbage can) The garbage can one is supposed to get a giggle and silly laugh out of the child and pull him in the direction of more positive behaviors.

We are also trying to stop using key words like need, should, want and instead insert the word try. It's amazing how well it actually works. Instead of telling Alex I need you to be quiet its instead Alex can you try to be quiet, leaving him to make an actual choice to choose that route instead of me telling him to choose that route. Another technique has been to turn it into our needs such as telling him Alex mommy needs to have a quiet time so I am going to go find someplace quiet to be. He has so far responded fairly well to those techniques as well.

The last thing we are trying is basically to really play up his decisions. For example if he chooses not to eat his dinner instead of being mad at him and saying you need to eat your food or even try to eat your food, instead we get all joyful Oh I am so glad you decided not to eat this dinner Alex, now Daddy can have more food and he is really hungry... (daddy eats food) Daddy says ohh Alex that (food) was soo good I am so glad you decided not to eat it so I could have it, and then let it go.

It is a very different approach and kind of hard to get used to so far (we jsut started) but so far he actually does some of the stuff we want him to with less tantrums. As the pyschologist put it, the key to these kids and their quirky brains is they like to play tug of war, but if you don't pick up the rope the game is over, we are trying ti either not pick up the rope or to pull in the same direction they are.

The worst thing is about the whining is that Mason has already learned how to make a whining sound without any words (just noises) and will sit and point at what he wants doig that *AUGHHH* The good thing about starting the therapy is that my stress levels have been reduced quite a bit and I am actually enjoying my kids more then I ever have. I am hoping some of the things also will work on Mason. He is far more of an agressive child then Alex as he throws things when he is mad and slams his head into the ground (which Alex used to do but never as hard). I can see us having problems with Mason hitting over the next 2 years, which we didn't have so much with Alex.

Erin

Moderator - Parents of Preemies
Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

[natan]

Natan will be three on 24th. He is going through a lot of changes this month. He finished his PT and OT provided by California Children's Services he started that when he was 9mo. On Tuesday he will graduate from First Step(Regional Center program). He started when he was a year and half. I am happy but sad at same time. I can't believe he is growing up. He still has issues which we need to address with school district in the Fall. We just started preschool and a local Jewish Preschool 3 days a week. (Not sure how I feel about it yet). It is still running like a summer program, not sure if things are too overwhelming for him. I know he is learning a lot from there. Like "No" and having mild tempertantrums.

In the fall we will continue with preschool and also go to a speech and language class provided by school district. I just got a call from Head Start(special ed program). They just put us on a waiting list but thinks we will get in. Currently, Natan doesn't have conversations yet, does not respond to name, the things he does at preschool you can tell a teacher helped him with.

I just wonder if this is the right program or should I look into Head Start. Am I deciding too quickley? Should I wait until fall to determine if this is right for him? Teacher at preschool says he is adjust well but does not give me more then general info.

Just little unsure about this program.

Deborah

[paljane8]

Great topic, BTW. Can I throw this out? My oldest was preemie and I have wondered if he had ADD or ADHD for years. The way it was explained to us is that he can focus on those activities he likes but, if he is not interested he is all over the place. Those with a dissorder can not stay focussed on activities they want to do because it is a biological not behavior problem. I agree that many children are diagnosed improperly but, watch your child and see if they struggle to stay focussed on their favorite activities. That is a real red-flag. So in our case, my oldest is just "busy".

Hey Deborah,
If it was me I would look into all programs whether it is set up by the school district or not. Scotty had an OT come to the class room to help him. Because Preschool was part of his therapy, it was paid for by insurance. He didn't qualify last year because he was at or above age level in all delayed areas so we footed the $200/m bill. You have to ask around to see which preeschools will cooperate.

Nancy Eastwood
Moderator/WA State Co-Coordinator

Calvin-8yrs
Saren-7yrs
Scott-5yrs (PE)
Janie-1yr (PIH, oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/

[laura]

Nance, I just have one thought on what you mentioned about ADD- that it's not ADD if you can focus on the things you like and not if you don't- as a long-time severe ADD'er- I have to say that we ADD'ers tend to hyperfocus on things we like and can do and can't focus on things we don't- so I can spend six hours sitting here poring over the boards, but reading, for example sometimes I can't read for the life of me. And I think the key is lack of consistency- you can hyperfocus sometimes, focus normally others, and still others can't focus at all. That's the frustrating part, never knowing what it's going to be...

Laura
Moderator/AK Coordinator

Mom to Alicia (severe PE) 5/98 and Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/

[aimeejane]

Laura, what you say about the hyper-focusing is exactly what Nicky's godfather says (also an ADD'er). That's what kind of kicked my suspicions into high gear late last year. Nicky can hyper focus on movies, books, and making lines (lines EVERYTHING up) - those are his favorite activities - but anything else, and he just can't keep his focus. It's so frustrating to not know whether or not this is neurologically-based or not. On one of his shows, Dr. Phil mentioned that there are specific neurological tests they can do to diagnose it, but I've not been able to find anyone to confirm that.

Deborah, if Natan qualifies, I say put him in the program! A good friend of mine teaches in one of the local schools at that level (3- and 4-year-olds, special needs). It's awesome - they're so much better qualified than the other preschool situations. Then again, if they suggest just having someone visit him regularly at his 'regular' preschool, that's also a good option. Lastly, if you're not happy with the preschool you've signed him up for, keep shopping. You need to be 100% comfortable with where he's getting his education. Try looking on the NAEYC website. http://www.naeyc.org/ A good friend of the family's is a nationally recognized expert in early childhood education, and she told me to ONLY send my boys to preschools with current NAEYC certifications. I've been very happy with the church preschool Nicky goes to.

Erin, I love the advice you've given on choices & such. I've always offered choices consistently, but I like the method you described a lot. I'll have to print that out for dh and the grandparents, so we can get a consistent game plan together. Thanks!!



Aimee
Georgia State Coordinator

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

[laura]

Aimee- I think the differences in the ADD brain are visible on an MRI but there isn't anyone using them diagnostically right now. That's the most common medical "So there" response to people who don't accept that ADD is something other than a behavior problem. I've gone through the diagnostic process twice-- once at an ADD center and once with a psychologist where I live now. My daughter was diagnosed by her pediatrician.

The test done at the ADD center, I think has fallen into disfavor. It's almost like a computer game with flashing letters, where you're to hit the space bar each time you see the "s". People with ADD will make specific errors relating to impulsivity and distractibility etc, and then they do the test again with medicine. At the end of that first test, I was hysterical, because I did well for about 15 seconds and then the test went all to h***. I begged him for a chance to try it again- and the doctor laughed and said that people with ADD are supposed to have a hard time with that test. They gave me 10mg ritalin and I retook the test and did much better- The scale was 1-100, and anything above 60 being abnormal. I scored 99 the first time w/o meds, and then 61 the second with meds. I think it's fallen into disfavor because not all people with ADD will respond to stimulant meds, though it is true that more people with "pure" ADD (ADD with no co-morbid disorder-- up to 40% of people with ADD will also have another issue) respond better and more quicly to stim meds.

Now, when I moved, I had to go through the process again- because, for the most part, if you walk into a doctor's office and say I have ADD, and I need Stimulant meds, they'll regard you as a drug-seeker. To cover their rears, I had to do the testing again. The second time was a battery of psychological tests (mostly check here if you___) to screen specifically for ADD and other "problems" "I rush through things to get them over with" "I like to harm myself" "I sometimes feel that I don't have a conscience" etc. to screen out other stuff. I came out with an ADHD with no accompanying disorder.

When my daughter went through the process, I already knew what the inventory for evaluation was looking for, and though I mentioned it as a potential concern at her 4 and 5 year annual exams, I waited until she started school, we had an opportunity to compare her with her peers and we had another adult on board who thought there was a problem. I'm going on a limb here, but I don't think they pay much attention unless the teacher's on board. I spoke with her teacher about three weeks after school started and I saw the "deer caught in headlights" look when she heard instructions-- and we decided to wait until mid-year to have time to observe. By Xmas, it was very, very obvious, and I had a half-year's worth of work to bring in to the doc to show.
She did the inventory, and diagnosed my DD and started her on meds and then her work began to improve almost immediately.

Through my battles I'd just say a couple of things- I KNOW how awful it is not knowing if there's something wrong with your child. I know it, know it, know it. But ADD is not a disorder like any other. You may just hit a peach who can help you with compassion on your first try- but after 12 years of dealing with this personally and one year with DD- I've never seen it be that easy. It was a painful process, because even with all the backup info I had in hand- I came under question, our homelife and parenting, her ability because of the mythical "overdiagnosis" of ADD, nobody wants to be the one to give stimulant meds to a poorly parented child, and unlike PE, nobody's going to die if they drop the ball, so they hedge and hemm and haw.

So I say- go slow. You don't want Nicky to come to you in 15 years and say, there was nothing wrong with me, why did you drug me, everyone says that Ritalin's just speed. You don't want your family or friends (all who think this diagnosis is the opening salvo in a debate over your ability to rear a child) to be able to bully you into thinking that you jumped the gun (and I still have friends telling me "maybe if you only tried ____ vitamin" she wouldn't have a problem since ADD is from allergies- etc. etc.) I've heard it all, from everyone- so much so that I don't really talk about it much. Just have your ducks in a row so you don't feel like you have to explain yourself.

If there's a problem with Nicky, when he hits school, you'll probably see it. Watch for impulsivity, and distractibility. Impulsive- when the kid has the scissors in the hand, and you say, "don't cut that" and then they convulsively start cutting like they can't help it... that's impulsivity. Watch in the classroom- I have just sort of intuitively started speaking in a tone and structure that gets my kid's attention. Other people won't be doing that, and if he looks like his teacher has suddenly spouted out in Latin when while issuing instructions- that's inattention. I was helping at an Art Center- and working with other kids (Because I lack the patience to work with mine) and saw another mom struggling to communicate with my kid and the stricken look on her face- and I just knew.

I made them make copies of her before and after work for her medical chart, I made them make copies of the inventories that the teacher and I filled out, because I wanted to make sure- 10 years from now, there's no doubt why we came to the decisions that we did. I knew three weeks into the school year that she "had" it, but I kept my mouth shut and bided my time, and I'm very, very happy that I did it that way. And the other thing- I just wanted to confirm the dx- but when the doctor did, (unexpectedly, uncharacteristically) started crying- because it hit me that this is something that my child is going to have to deal with and accomodate for the rest of her life. I wish that I hadn't been such a hurry to finalize that diagnosis. Sorry for the book! you just touched a nerve because I know you are where I was, and that isn't a great place to be. Good luck to you guys...


Laura
Moderator/AK Coordinator

Mom to Alicia (severe PE) 5/98 and Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/

[deerhart]

Alex can hyper focus on things he really likes, but he can aos focus on things he doesn't like as well, whcih makes me suspicious of an ADD diagnosis. I also think he is just like me and most of it will disappear by the time he is 8-19 years old.

Erin

Moderator - Parents of Preemies
Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

[aimeejane]

"Because I lack the patience to work with mine" - OMG, that is SO me.

Laura, thanks SO much. That is the most comprehensive, comforting advice I've gotten yet. I've kind of "let it go" for the past 5 months or so, and I plan on just working on improving the way we work together in the meantime. I'm definitely saving this thread. You know, there's sort of a guilt factor going along with this whole thing. I DON'T want him to have something like this - where, like you say, he'll have to adjust and accomodate for it for the rest of his life. But at the same time, there's a little part of me saying, "But if he DOES have it, then there are specific ways to deal with it." That's the guilt part. I suspect you understand, at least to an extent. I will take your BTDT advice completely to heart!

Aimee
Georgia State Coordinator

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