[blue]Hi -

I'm new to the forum as of yesterday and have a question...

We have a wonderful ECI team, but it's a bit overwhelming for me having all of the services and all the homework every week. We have PT, ST, OT, and the general teacher coming each week or bi-weekly. I know we are so fortunate to have all of them, but I would love to be able to just play with my baby without having to worry about every little position and etc… "I know poor me...", I feel pathetic writing this, but hopefully at least one of you can share some of your light on my experience.

Lana's only 9 months old and I know so much more is to come.

Thanks in advance!
Pathetic Me
Jenna [/blue]

First thing...DON'T WORRY ABOUT IT!!! Your baby is a baby. We didn't FOCUS on developmental stuff to do with Angela. If we were on the floor playing with her, we would just encourage whatever positioning or skill we happened to be working on, incorporate it into whatever we were playing with at the moment. And WEEKS would go by when we did NOTHING outside of when the therapist was there. You are one person and can only do so much.

By the way, WELCOME to the site!

Janna, we all know where you are coming from.
Megan receives 2x a week of PT
she has ST, OT, and a teacher.
5x a week she is under a watchful eye!
It gets overwhelming.

Just knowing she has an older brother should give you peace of mind. He will keep her on her toes.

Therapy will always be a part of your life now. Try giving yourself a day or 2 off. Megan gets 2 therapies on Monday, 2 on Tuesday and 1 on Thursday, that way she has off Wednesday and Friday (although they end up being the days for doctor's appt. LOL)!

So glad you joined the site and thank you soooo much for the nice email!!!

Jenna, I know exactly where you are coming from. We have 8 therapies a week at home. When Anna was first born I felt this overwhelming need to make every moment count. Of course, that was absurd, so I've realized that I should try to incorporate the stuff the therapists do with Anna in play and the rest of the time, let it go. Don't forget that all the "normal" activites your daughter is involved in like going to the grocery store, watching her brother play with his friends, or even going to church are teaching her too. Don't stress too much about the therapy, and just enjoy your little sweetheart.

I had a hard time in the beginning too. It is very overwhelming at times to say the least. I don't know if it just has become my new "norm" or what. With Dylan he has co-treats (his OT and SP) come the same day at the same time and work together. And some times his PT and teacher will co-treat if they have to do a make-up. Try and get at least one day off with no therapys. And do the best times for you and her. I prefer Dylan's teachers all come in the mornings when he is best rested and then I have my afternoons to myself.

I wish we had part of that problem! We have a primary coach model in our area and have seen the PT 3 times, ST 2 times and the others, well, what do they do? They just keep telling us that Koda is doing just great and if it wasn't for the T21 diagnosis he wouldn't even qualify for services. I, on the other hand, do not agree. We are having to enroll him privately in ST at the local center to get anything done. I guess to me the goal is to have him develop as typically as possible. A 2 year old usually talks. Koda says like 4-5 words. I feel that can be improved.

As far as physically, I think that when we quit trying to treat him as an object to be molded, (every activity structured around what ever skill we were working on, every toy purchased for a specific developmental ability,) and more like a "normal" kid (playing with toys because they're fun, letting him get down and dirty with Dad) he started progressing much faster with development and his willingness to learn.

Anyway, i'll cut to the chase here, my opinion would be to give you and the baby a few days off a week to just be mother and daughter.

Hi Jenna,
Welcome to the site! Your children are beautiful! I know EXACTLY how you are feeling. I know this is going to sound so politically incorrect, but I hated therapy and wasn't good about "working with" Jane when she was little. I found that if I even attempted to do all of the exercises they were advocating, I'd be doing them day and night! Instead I just treated her like my older 2 and let them play with her.Honestly, they were and still are the best therapists for Jane along with her little sister. I had the therapists'advice in the back of my mind and if some of the exercises fit into our routine I would do them, but generally I just exposed Jane to a whole range of activities and experiences just like any typical kid and she has thrived.

It gets so much easier,in my opinion, when at 3 the kids go to pre-k and everyone is out of your house. Jane was so ready to get out and go to school and she just took off verbally and developmentally with her advancement to pre-k.

My advice to you would be first and foremost to ENJOY your daughter and know that she will grow and learn at her own pace. I think the therapy can be helpful, but what is most helpful is including her in all of your family's experiences, talking to her and loving her!

I should also say that Jane is a very typical kid with Ds. She doesn't have any health issues, feeding issues, etc. I know that in different cases, therapy is absolutely essential, but luckily for Jane she has the typical delays of a kid with Ds.

Hope this helps. We've all been there!

[Edited by Amy Jensen on 02-04-2006 at 10:12 AM]

I'm going to agree with Amy. We always had the therapists advice at the back of our minds but just treated Callum like any other kid. if we wanted to spend a day just watching TV and snuggling then that's what we did, if we were doing something where a therapy exercise easily fitted in then we'd do that.

Just enjoy your little girl, she's only a baby once

Thank you all for your helpful suggestions and understanding. I have become less overwhelmed and am trying to focus on playing with her in a structured way. Meaning I play while I work with her so this way she doesn't know and I don't realize it. It has become part of our playtime instead of a three times a day workout... it's so much fun to see her progress through this new approach. I'm including my bragg below. I'm so excited!

[yellow]"I did it!!!"[/yellow]


[yellow]
My little Lana lays on her back or rolls around until you put her in the sitting position and today she did it!
It was the perfect timing too. She tried a lot today, but when her Dadda came home she did it all by herself!
It was so exciting!!! [/yellow]

The moment it happened...


Our PT has been telling me for weeks that she will be bringing herself to sit, but I didn't see it... this is our first real sign therapy is working.
Ok I'm not so overwhelmed with therapy anymore.

Your little girl knew exactly what you needed

Getting to sitting is a wonderful milestone

I agree with the others...and she is so cute, her little personality just shines through in her photos.

P.S. be thankful you get all the services you do. Elainah only qualifies for a teacher two hours a week. Unfortunately, she scored too high on all her evaulations to get anything more. This is frustrating for me because she is behind in communication and because we had OT and PT before we moved here from Iowa this past September. She has never had speech anywhere.

I missed this when you posted. I just wanted to say how much I loved your photo session of Lana sitting!!! Way to go, Lana!

I totally understand how you feel!!! My little girl who is almost 4 1/2 has therapy everyday but Monday. I do feel sorry for myself. It was really hard at first when my friends of typical children could go and do as they please and I felt like all we did was therapy and dr. visits. My little girl is not in school b/c she has a lot of health problems-asthma and such and gets sick a lot. My pediatrician and I felt it would be better for her to get homebound therapy (that was a fight in and of itself!!!) I tried putting her in school at the beginning of the school year this year, but she was sick more than she attended. My sister once said after Sarah was born that she sure had a whole enterage of people who saw about her-IT IS OVERWHELMING!!!! I find it hard not to be resentful sometimes!!!! I am absolutely head over heels in love with my little girl, she is my buddy and I feel like we are joined at the hip-LOL-I feel a particular closeness to her b/c I have had to care for her so much and I wouldn't change one thing about her-She adds so much to our family, but I do know how you feel and know that it can be hard at times-I just pray a lot!!!! Just hang in there and if you ever need to talk feel free to email me.
Kati
)

I caught this post late as well. Kennedy receives 6 therapies a week. I think at this point it has just become part of the norm. And I also really don't do therapy everyday. Probably moreso in the beginning but now that she is running around, she learns more from her brother and sister. We treat her exactly the same. The one thing we do do is sign to her whenever we are talking to her. While she says about 20 words, we still think she needs the signing.
We do what we can do. There are days I feel guilty that we are not doing enough, but it cannot be therapy all of the time. And like I said, she learns more from Cameron and Kendall than from anybody else. She wants and tries to do everything they are doing. They are her best therapists. I do wonder whati will do with all of my time when she starts school in September. I am going to have somuch time on my hands.

Here is an article you may find interesting. http://www.altonweb.com/cs/downsyndrome/index.htm?page=brannan.html

Nathan had services increased at 8 months of age from twice a month to fout times a month. Even that seamed like alot to me. We follow a family centered approach where I am taught a few things to work with Nathan on till the next therapy session. It has worked well for us. The important thing is that you as a family are comfortabe with it...no one should be overwhelmed. There will always be the quilt ... am I doing enough? ... it is just normal. Therapy is not necessarily going to make your child achieve those milestones any quicker but will see that they are using the correct patterning amd muscles and help to build these in the normal development hierchy.

Important to play with your child, talk to them and read to them... The best advice I read after Nathan was born is to not treat them as your science project. I know some feel more comfortable having daily therapy but soon they will be in preschool...I just want Nathan to be a baby right now. I never want therapy to be his life.

Jenna,

I, too, just found this post and needed to send you a BIG "thank you" for posting this topic! I suppose I am still learning that the feelings I am experiencing are the same one so many others have experienced but, without your post, I know that I would not have even asked the question for fear of feeling like a truly terrible mom.

Kierra, at nearly 6 months old, only receives one hour of PT, OT and ST per month . . . judging by the amount everyone else's little ones receive, I wonder if this is actually too little formal therapy? I have felt the same way, though, feeling obligated to do as much therapy as possible each day then feeling guilty if I did not do something for a day or two, afraid that I could cause Kierra to fall further behind. Again, thanks for this post - I feel better just knowing that others have felt overwhelmed with it all, as well!

~Tawni

It is so true that each and every child and their families are diffrent. To be honest Khloe (now 8 months) has not seen a single thearpist since she has come home from the hospital. I can hear some of you gasp.... But she is our 5th child... we know the things and exercises to do with her, and he Ped also believes that we need to keep a watchful eye but just let her be a baby for now. She is trying to sit, but has some floppy issues. She is a doll and soooo smart. We are also homeschoolers and will be schooling our children ourselves. We never thought that it would be us doing that, BUT it is! We had a VERY neg- experience with the special ed team here. Our situation is also diffrent in that our children are adopted and 2 have attachment needs. We just personally don't believe a 3 year old "needs" to be in school. We do however think it is GREAT for the folks that it works for and who have a good team to work with. For some kids it for sure is the right thing. Just please remember throughout everything that you are the PARENT!!!! You have the RIGHTS!!! No one can tell you what to do or when to do it for your child. You are the mother and you will know what is right and do that to the best of your ability. DO NOT ignore that gut feeling that tells you not to do something. That is what happened to us and it truely nearly distroyed our family and at the time almost disrupted our new 3 yr old sons adoption! Good luck and God Bless, Megan

ps you can always discuss fewer visits... you are entitiled to limit the number of visits, and as you said you are already working with your child.... it's not like my son who was left in a crib ALONE in a room ALONE.... your baby has a mama who loves him.