Subject: Milestones

I got out Katie's babybook to remind me of her milestones.

Milestones:

4 months rolled over - stomach to back

6 1/4 months rolled over - back to stomach

8 1/2 months sat alone - but only if put in this position and would fall over easily.

13 months military crawl (on stomach using forearms)

14 months pulled self up on low pieces of furniture

15 months pulled self up on couch, could crawl up a couple of stairs

19 month up on hands and knees, (I didn't write down when she actually could crawl on hands and knees)

3 years started to walk (I wrote unsteadily)

3 1/2 years rode trike (with feet strapped to pedal)

4 years walked fairly steadily

Janis Katie (del +, almost 13)

Subject: Milestones

Hi Everyone:

Here is our contribution to "milestones". David rolled over when he was about 3 - 4 months old but later stopped doing it for awhile. He sat, when placed in a sitting positon, at age 8 to 9 months and sat up on his own at about 1 year. He walked around furniture at two years and walked independently when he was about 4 1/2. Started toilet training at about two and, except at night, his success depended (s) on our keeping a routine schedule. Drank from a cup at about 18 months and gave up bottle at age 2. Began staying in bed, but not sleeping, in mid teens and became less active at the same time. Seizures started at age 14 months and through the years have been controlled by various medications. Started preschool at age 2 3/4 and aged out of school at 21 + 7 months. Became aware that he can spell words at age 26. Moved to his own home at age 27.

In addition, he has been one of the great loves and joys of our life for 28+ years.

Carolyn & Fred Windbeck (David 28 del+)

Subject: Re: milestones

Cindy wrote:

>Hi Frank- I'm Cindy mom to Bobby age 7 deletion negative. He rolled over at the usual time >for a baby- but rolled from back to stomach first- and then stomach to back- I think he did >these backwards- he did the more difficult first. He didn't sit up until almost nine months old. >He didn't walk independently until he was almost 2 years old. I think this is early for a child >w/AS.

Hi Cindy,

Thanks a lot for sharing Bobby's milestones. He does seem to be quite a bit quicker than our Liselotte, she is one year old next week and is a long way from sitting up or crawling or walking...However there is progress and even we, who see her every day, see her improve physically each week when we take her to the physiotherapist.

Maybe the deletion negative test result of your Bobby has something to do with the pace of development, I believe it is assumed that there is a distinguishable difference in motorial development depending on the size of the deletion and indeed the presence of such a deletion, I think I recall mailings to this list that imply that UPD angels are quicker in their development than angels who have a deletion. Hasn't this been investigated in any way, I wonder. Not that it matters so very much if an angel walks at two or at five, but naturally I hope that Liselotte won't have to be carried up and down the stairs anymore in a couple of years, especially because her grandmother is already saying she is becoming quite heavy... I hope some more subscribers to this list are willing to share the milestones of their angels, perhaps

I can propose this set of milestones:

-rolling over

-sitting up independently

-walking along furniture

-walking

Frank van Hof, father of Liselotte, 11 months, del+. http://www.zeelandnet.nl/people/fhof/

Subject: Re: milestones

Hi Frank,

Jennie rolled over at 1 year, sat up (not real well though) at 7 months. She sat up leaning way forward and her legs spread way out. I can't remember when she cruised furniture, but she walked at 3.5 years. She is deletion +.

Janice Daley

Subject: Re: milestones

Frank,

we don't have an exact record, but our Katie A., age seven, was doing almost nothing motorically except moving along the floor on her back by swinging her paired legs up until 16 mos. of age. At that point, she was fitted with eyeglasses for extreme farsightedness ( bad enough that the ophthalmalogist said she was crossing them trying to focus). From then (16 mos.) to 33 mos., she rolled over, commando crawled, crept, sat up and then walked independently. We of course, were amazed by the burst of development because at that time we had been told such as: "most AS children do learn to walk, by about age five." and other such greatly delayed milestones. I'm sure the "data base" for those average milestones was much smaller at that time. I wonder if it's been updated by the Foundation?

Deanna

Subject: Re: milestones

Dear Deanna,

I was appalled when I read in the literature that AS people attain an expressive speech level of about eleven months and a receptive level only a little more advanced. What rot. Then I realized that the research population was institutionalized, some of them since infancy. I wonder if the milestones statistics come from the same population? It would surely make a difference.

Martha

Subject: Re: milestones

Dear Frank,

I can't be too specific about Sara's milestones because they happened very gradually. I mean, our son started walking one day and walked from then on, but Sara sort of walked, then didn't, then walked a day or two, then didn't, then walked.

Sara did not crawl until after she walked. She walked at about 3 1/2 and wore special shoes that had an inner set of laces to hold her heels down. I cannot remember about rolling over, although in lieu of crawling she did roll about on the floor, and that was very early, before one year. The thing I remember most is that she was (and is) very strong in her large muscles and held her head up steadily at only a few weeks of age.

Sara is UPD and seems slightly advanced in areas of expressive language (but then, she has had a really intensive program since last summer, so I don't know if that's related or not).

Sara could sit quite well by six months, IF you sat her. She was not able to get herself to a sitting position independently until perhaps age three. She still has difficulty moving from a complete prone position to sitting.

Subject: Re: milestones

Hi Cindy,

I'm Nancy, mother of Daniel age 3 (del -) (upd -). I read your letter regarding your angel's milestones. My son also took his first steps at age 2. He can just about run now, though he is still quite ataxic. He loves to chase bubbles in our back yard and it has been the best PT he's ever had. Daniel just learned to stand up w/o the assistance of a wall or chair. He can get up in the middle of the floor.

After reading some of the letters over the internet, I've found that your angel has a lot of motor similarities to Daniel. Please write back when you have the opportunity to tell me more about some of the milestones and daily life skills .

Daniel's milestones as of age 3yrs 2mns:

he can say mom and bubble (not on command)

he can eat icecream with a spoon uses a fork if I poke for him will not use a cup, it's still a toy to him will not point, he will take my finger and point to identify a picture correctly he nods his head "no" but will not yet nod "yes" he can pull his shirt over his head no potty training yet (heaven help us)

medical info: seizures noticed and treated with depakote at 18mns. Depakote was a total disaster. his tremors worsened so we changed to tranxene . We have noticed much improvement.

Nancy

Subject: RE: MILESTONES

Hi Nancy,

I also have a son 3 del+, Cole also started to walk at 2, he can now run pretty good and gets around just fine. Cole has never had any seisures (thank you God), he is still on the bottle, is seems when he takes a drink from a cup he takes to much in and the rest of it falls out of his mouth, but we are still trying to get him to drink from a cup. Does Daniel sleep through the night? I see that alot of our Angels have trouble sleeping through the night. Cole has been sleeping through the night since he was 2 weeks old. We usually give him a snack before bed and NO NAPS during the day. We only let him have one if he falls asleep in the car. Cole also attends pre-school he seems to like it but he won't let me leave him, so I just hang around and play with the other children while the teachers do activities with him. I hope that I hear from you again or others with Angels like Cole.

Anita Hoxie, Colorado

Subject: Re: MILESTONES-cup drinking

A funny thing happened to us. Being an old fashioned grandmother, and not accepting the current practice of withholding solid foods until a child is about a year, I started Katie A. with cup drinking at about six or seven months. When I saw how sloppy it was, I switched to the "sippy" cups with the spouted lids. Later, when her general motor control started to improve, so that she wasn't always dropping or toppling her cups, we started to switch to open cups and straws. Even though she does have the oral-motor problems with eating, she never had a real problem with liquids and I think this is why. Just the much longer experience and practice could explain it.

Deanna

Subject: Re: MILESTONES-cup drinking

Deanna, Pretty much the same here. I went ahead and weaned Jennie off the bottle at 10 months and started her on a cup several months earlier, only because that was when it was supposed to be done. I also started her on solids and finger foods at the normal time. She was sloppy but eventually it all came around. When she started therapy at 15 months, the feeding therapist used a cut out cup and held her lower lip tight against the cup.

Janice (Jennie 15+)

Subject: Re: MILESTONES-cup drinking

Hi everyone!

Katie also began using a cup and eating finger foods at the "normal" time. She weaned herself at about 10 months and I switched her to a cup. I don't remember much trouble with her feeding in the early months. She liked cheerios, crackers, cheese squares, hard rolls, imitation crab, seafood, etc.

At this age she was a little behind schedule and I treated her normal.

Janis mother of Katie (del +, almost 13)

Subject: RE: MILESTONES

Hi Tracy, Michael sounds just like Cole 3 1/2. Does Michael hold on to your finger for support or just for his confidence? Cole would just hold on to our finger for confidence, so we found something that he really liked which is hats and we would hold out the hat and he started taking steps and when he realized that he could do it we haven't been able to stop him since. Cole started walking 1 year ago, hopefully this helps. Anita Hoxie ,Colorado

Subject: RE: MILESTONES

Hi Anita, Michael holds onto my finger for support about 50% of the time. There are times when his balance seems great and he could let go if he had the guts, but other times when he's all over the place and really needs to hold on for support. I do like the idea of giving him something else to hold in his hand and still give him support and then maybe gradually let go of it. Thanks for the idea of holding onto a hat. Tracy in Boston (mom to Michael, AS 3.5, and Patty, 5 mos)