Delayed motor skills-Need to talk

[caitlynsmama]

Hi all,

Caitlyn went through her nine month developmental follow-up clinic on tuesday at the hospital. She scored well on her cognitive skills, but was lower than I hoped on the motor skills. She is not crawling yet, and does sit up well for me but would not for the PT. I was always under the impression that all babies like all individuals do things differently. Heck, I rolled around the room on the back of my head and stood up and walked a week before my birthday. I work with Caitlyn every night since I have to work and as often other times as I can. We cannot seem to get a PT since my husbands health insurance is bad about paying. I guess I just needed a little boost of confidence from other preemie moms. I love Caitlyn with everything I have and am so proud of how far she has come that I was in tears tuesday. I think partly out of frustration, and partly out of not wanting to hear that she is not doing as she needs to.



Shannon Mommy to Caitlyn Elizabeth 30 weeks, 3 days born (8/26/2003) early due to PE, IUGR, HELLP syndrome, premature rupture of membranes

[tahoe4]

My DD is currently 17 months old and was born at 34 weeks. At her 15 month pediatrician appt, it was recommended we get her tested for speech delays and developmental delays. Very rarely will insurance pay for this kind of thing. But depending on where you live, there should be a FREE program through your country (ours is called Help Me Grow, Early Intervention). An RN who specializes in delays will come to your house and evaluate your child and decide if she needs therapy. I'm not sure if 9 months may be too young for the program, but maybe not. In any case, we just started speech therapy with our daughter, but her occupational therapy hasn't started yet.

I don't think you even need to get a referral at all for the country program. If they come to your house and decide your daughter doesn't need therapy, then great. If she does you'll need to find a therapist and the county should fund everything for you.

Let me know if you have any questions and I'd be glad to share anything else i know. While we were concerned about our daughter needing therapy at first, now we're so glad that she can get all the therapy she needs free of charge to get her caught up. It's like a big play session to her, but she learns at the same time.

Stephanie

Casey - DD born 12/25/02 at 6 weeks premature
Prego again! - EDD 6/18/04, but c-section date will be 6/4/04 at 38 weeks

[mada]

Hi shannon,
Just a little reasurance, Sam was born at 36 weeks and he didn't crawl until he was 10.5 months and didn't walk until 16 mo.'s!! He is almost 4 and has no problems at all....well...that is a relative term but he climbs everything, runs, skips, jumps, and I cannot keep up with him!!!

Mada Harpster-moderator for pregnant again

Sam 6-29-00 36weeks P.E.
Ben 11-03-01 No P.E.

[caitlynsmama]

Thanks for the responses! I was searching the internet and came up with these.

Seventh Month

Begins to sit without support. (she does for me at home)
Holds two toys simultaneously. ( does for me)
Plays with feet. (even likes to put them in her mouth)
Makes a razzing sound. ( and all sorts of other sounds)

Eighth Month

Sits well without support.
Looks for a dropped object. ( just started doing this)
Picks up small objects with a raking grasp. (loves to do this with everything)

Ninth Month

Stands with support. (she does this)
Creeps on belly and/or crawls. (not yet, loves to roll around and creep on the back of her head like her mommy)
Uses pincer movement (thumb and finger) to grasp objects.
Bangs two toys together. (just started this)
Vocalizations become more complicated—baby raises and lowers pitch of voice, uses one-syllable and poly-syllable sounds and babbles chains of vowel-consonant sound combinations.(vocalizes well)
Enjoys peek-a-boo, pat-a-cake and other games. (enjoys these)
Waves bye-bye.
Says mama or dada indiscriminately. ( is good at dada)

So, needless to say she has been doing things that seven month olds, eight month olds and nine month olds do. I guess I am just so new at being a mom and all we went through to get her here that when someone says that she needs therapy because she does not want to do something "on command", I get a little touchy. Thanks again for being here to bounce this off of. I am hoping to have #2 sometime between 2005 and 2006 so hopefully I will be much more "prepared" for things.

Does some finger feeding.
Pulls self up to standing position from sitting position.


Shannon Mommy to Caitlyn Elizabeth 30 weeks, 3 days born (8/26/2003) early due to PE, IUGR, HELLP syndrome, premature rupture of membranes

[angelical]

I concur with Tahoe. Early Intervention is a wonderful program. It is free, so the insurance, etc. doesn't have anything to do with it. All kids from birth to three are eligible.

They evaluated Aaron when he first came home from the hospital. (it was at about 2 months old, or -1 month adjusted) They worked with him, and evaluted his progress for a year. Then, when he was about a year old, they did a big re-evaluation and discovered that he was "caught up" and didn't qualify anymore.

I LOVED having that reassurance that he was being watched so closely. They would have caught any minute step that he missed.

I actually called our developmentalist yesterday, about a year past our last appointment, to ask her about some things that he does... just to make sure it is normal. For me, it is like have another mother (but one that actually KNOWS what a kid should be doing, LOL)

Good luck!
Sharel

------------------------
Sharel O'Connell
Local coordinator for Pittsburgh area
'Parents of Preemies' co-moderator
Survivor of Preeclampsia, HELLP Syndome, & preemie parenting
Future adoptive mom

Aaron (28 weeker, 5/2/02) -- my tiny guy is TWO!
Kevin - DH

[sarab]

Hi Shannon,

Too crazy -- Maggie had her 9 month developmental check yesterday too!

A nurse from the health department comes to our house once a month to test her and see how she's doing. Like Sharel, I LOVE having this program because it's so reassuring to have someone check her out so often, and let us know exactly how things are going.

Maggie is nine months adjusted (she'll be 1 in less than 2 weeks...), and she is not crawling at all yet. She sits up very well by herself, but that is about all. She doesn't like to be on her stomach (she never has, despite all our "tummy time" sessions), and won't even push herself up into crawling position. Just like Caitlyn, Maggie always does well on the cognitive and social tests, but is behind on her motor skills. I really haven't worried about it much until yesterday. The nurse was pretty concerned about it, and showed us some things to be doing with her to help. If Maggie is not crawling by her visit next month, then they are sending us to Kids on the Move (the local early intervention program).

Like you, I had never worried about it because I know that all kids are different and "get" things at their own pace. At this point I really don't think that Maggie has developmental problems -- I just honestly think she just doesn't want to. (Dh says she is just lazy and will start crawling when she feels like it...). There are a lot of kids her age at church who are crawling (some even walking!), and she always sits and watches them, fascinated. We are thinking that maybe the "peer pressure" will get her motivated... :).

So try not to worry too much -- you are not alone in this. Caitlyn will start crawling when she wants to, and all you can really do until then is encourage her and keep working with it. Like the others said, I would really encourage you to look into your local early intervention program.

Let us know how things go, and please e-mail me or post again if you ever need to talk.

Sara, 23
Local Coordinator, Utah

DH, Scott, 26
Maggie Lylas, 6/9/03, 29 weeks, severe pre-e
http://www.babiesonline.com/babies/m/maggielylas/

[deerhart]

Okay a few things from a BTDT mom
1) EI is free through the school system, so you don't have to pay for it nor does insurance. They will do evalutions and therapy at no cost to you

2) make sure your comparing her skills to her adjusted age and not her actual age

3) always always ALWAYS remember that the milestone *guidelines* are a range
- for example it is normal to walk between 9 and 17 months, even if you think not waling until 15 months is late, its STILL within normal range.
Thus its imprtant to get the full age range they are comparing it too.

At her being 9 months (6 1/2 adjusted) she should just be starting to sit up on her own and most likely won't be crawling yet. Both my boys sat up on their own in the 6-7 month range and started crawling at 9 months, so you should expect Caitlyn to crawl in the 8-11 month adjusted age range (roughly 10 1/2 - 13 1/2 months actual age)

Finally, my oldest son showed a fine motor skill delay when tested, which by the time therapy started 2 months later had disappeared. Sometimes it just takes kids a little bit longer to make those connections (and he was 3 years old)

I know all the milestones are hard to take, and a lot of people forget about the range and expect that since most kids do x at z time then when their child takes a little longer there must be somethign wrong. That's not true, just if 50% of the kids crawl at 9 months, it means 50% of the kids didn't crawl at 9 months. Caitlyn is still in good company.

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

[kylesmom]

Shannon- My ds just had his 9 month check-up and its funny b/c he's actually doing (and not doing) all the same things as Caitlyn! He has always hated 'tummy time' but he had such bad reflux that tummy time always made him sick.[xx(] Anyway, my point is that my ped suggested early intervention for him too; however, when I noted that milestones are a range she said 'yes, but are you a parent that can wait and see another 3 months or will you feel guilty if he hasn't improved by 12 months and you wasted 3 months?' Personally I think some take the CYA approach so you can't turn around and sue them for not referring you earlier. Anyway, given that I am a speech pathologist that WORKS with an early intervention company, I have a good understanding of what's 'normal' and can safely say that I can take the wait and see approach. Go with your gut.

One note about payment though (since there may be some conflicting info in the above postings) is that to my knowledge, it's on a state by state basis. Connecticut just began a minimal fee for services for EI (Birth-to-Three) to offset government funding. It is dependent on how many children in the family are being seen, types of services and family income. Our school systems are not involved until they turn 3. Anyway, like I said, go with your gut, but it sounds to me that she is doing just fine!!!

Jennifer 32
Kyle born 8-13-03 @ 38 weeks (severe atypical Preeclampsia and Class I HELLP)

[angelical]

One other note about early intervention....

(yes, all of them seem to be a bit different in guidelines, etc.) But with ours, they will provide services if the child presents a delay of at least 25% from the BIRTH DATE. Which I feel is a good thing... it makes it more likely that the child will be able to have that kind of support, even if we preemie parents know to adjust the age to what it should have been.

Here's what I mean... When they first evaluated Aaron, he was two months old (which was still 1 month BEFORE his due date), but they had to evaluate him on a 2 month old level, which meant that he was "behind" in almost everything. So, that got him into the program, and he was evaluated weekly, then bi-weekly, and then monthly as his needs changed over the year.

Also, the next year, when they re-evaluated him, he was 14 months old (but really 11 months old). So, he would have been able to continue in the program if he showed a 25% (or 3 1/2 month) lag from his birth date. Basically, he would have had to have performed at a 10.5 month (or less) level to qualify. Which was funny to me, since he was really only at 11 months old. (He actually performed at a 12-14 month level, which was amazing)

So, anyway, I just wanted to let you know how that all works here. I know the developmentalist worried that I would be upset that he showed a lag sometimes, but since I knew to adjust his age, I never cared what the state thought about it. I was just happy to have that support. Aaron really never needed it that much... or maybe it helped just that much. I don't know.

Good luck with Caitlyn. I'm sure that everything is fine with her, but it is nice to know that there's a program available to help you be sure.

Sharel

------------------------
Sharel O'Connell
Local coordinator for Pittsburgh area
'Parents of Preemies' co-moderator
Survivor of Preeclampsia, HELLP Syndome, & preemie parenting
Future adoptive mom

Aaron (28 weeker, 5/2/02) -- my tiny guy is TWO!
Kevin - DH

[caitlynsmama]

Thank you so much for your help and support. I was thinking about something the other night when I was sitting on the floor with Caitlyn, the atmosphere and the surroundings make me nervous being in the hospital in a little hospital room. Wouldn't it be better to have these developmental follow-up clinics in a atmosphere where the babies would feel more comfortable? There is a small play room upstairs in the transititional nursery of our hospital that to me would be a lot more comfortable for the clinics to be held in. The floor is carpeted, they are surrounded by bright cheerful colors, and toys. Where they hold them is in the Pediatrics Speciality area in another part of the hospital and the rooms are decorated on the walls but they are like any other doctors office with the cold floors, etc. I have much more luck with Caitlyn at home where she is comfortable. She sits well for me, plays with toys while sitting, rolls around the room like a champ. She is not a big fan of her tummy time but we are working on it. Does anyone see where I am going with this?

Shannon Mommy to Caitlyn Elizabeth 30 weeks, 3 days born (8/26/2003) early due to PE, IUGR, HELLP syndrome, premature rupture of membranes