tag:blogger.com,1999:blog-818973399306650502.post7666666117343914805..comments2023-12-21T05:46:01.833-05:00Comments on Happy Soul Project: I got a big love/hate on...Happy Soul Projecthttp://www.blogger.com/profile/17653500216357181319noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-818973399306650502.post-41357554969106744682013-11-07T17:05:49.779-05:002013-11-07T17:05:49.779-05:00Tara---I am actually crying from reading this beca...Tara---I am actually crying from reading this because I feel the exact same way at times. Right now Jadon only has PT 1 x a week at daycare. He doesn't need anything else right now according to Early Intervention. He has taken to solid foods without any issue he's 19lbs already, lil turkey), so they don't feel a need for OT. However, upon reading the PT report from his PT sometimes it just makes me so angry because darnit, he does amazing at home and during the week at daycare. He has an amazing daycare teacher who works with him so much. God blessed us with her.However, when I read that Jadon didn't hold his head up high or long enough while on his belly, or he needed support while on his legs, I think to myself, for Pete's sake he just turned 6 months old and even though he may have Down Syndrome, he is hitting milestones and I know "typical" babies that are in the same boat. I so hate using those types of words that's why I put them in quotes. Sometimes it makes you feel like they don't think you are doing all you're supposed to be doing. My son is amazing, as are all of our children. Hang in there because we all know the phenomenal job you are doing, as well as the us doing the same. At the end of the day, my baby smile makes all of that go away! Anonymoushttps://www.blogger.com/profile/13381252630376317879noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-89300527317071278432013-11-03T16:01:46.730-05:002013-11-03T16:01:46.730-05:00I'm new parent to my lovely 5 month old who ha...I'm new parent to my lovely 5 month old who has DS and also specialist speech and language therapist working with children with special needs for 20 years and I have to say,<br />THERAPY DOES NOT NEED TO BE LIKE THIS!!!!<br />There is no need to ask stuff like do you talk to her and do you look at her when you speak to her.<br />There is no need to tell people say it again and again and again.<br />But we (therapists) are trained to work that way, so for now that's what we get unless we meet someone with a different approach.<br />I believe therapy should start with the issues, questions, concerns that are pressing for families. I wish to offer, and receive, intervention that is supporting not intrusive.<br />I wish not to judge and be judged, I wish for skilled and kind therapists who discern and inform.<br />Love the photos, your kids are beautiful.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-11204040029121338192013-10-31T01:24:41.775-04:002013-10-31T01:24:41.775-04:00First off, I want to say as a new Ds mom, I love y...First off, I want to say as a new Ds mom, I love your blog. I know what you're saying about the feeling of ,basically, "intrusion", into your life as a mom with your little one but I'd like to point out that you are lucky that you have a sibling for Pip - which I agree has to be the best therapy and most importantly that you are able to access therapy services at all. Think of your little girl's life without either. We are trying to figure out how to best help our little girl without either of these huge helps you already have in your life. Be grateful.HowThisWorksMamahttps://www.blogger.com/profile/00225466734924598439noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-51450624895063797452013-10-31T00:19:35.646-04:002013-10-31T00:19:35.646-04:00I can definitely relate. I know you get tired of ...I can definitely relate. I know you get tired of hearing "it gets better" but truly it does. The therapists live in "therapy land" where everything is fixed by following the recipe precisely, and you live in "real world" where sometimes you have to throw in a little of this and a dash of that. My son with DS is 5 and my daughter with DS is 2. We have 9 hours of therapy a week between the two, and sometimes I just want to go hide in a cave! The good news is I've finally found my voice! Now I'm much better at telling the therapists what won't work for us because we live in "real world". good luck! and maybe find ways to give mr. speech therapist a verbal punch in the neck such as "right now you are pushing MY buttons so stop talking now, mm K?" Oh, and STOP reading the reports. they are useless to you if they are comparing your child with a typically developing child. they should be about her progress and her progress only. who cares what other kids are doing. she's adorable. she's progressing. She will be a rock star. anonymous mehttps://www.blogger.com/profile/05785614939507708523noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-11891679771710586792013-10-30T23:13:00.967-04:002013-10-30T23:13:00.967-04:00This right here....." .Days were she just loo...This right here....." .Days were she just looks up at me with tears in her eyes & I can tell she's exhausted...Those days I just scoop her up & tell them she's done & that we will work on things at home.."<br />These two sentences amongst today's blog prove that you are an amazing mother to an amazing little girl. Yea therapy will help, but above all, you know what's best for Pip :-) Inspired momnoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-67342657509175302122013-10-30T21:50:34.172-04:002013-10-30T21:50:34.172-04:00haha I feel the same way but didn't have guts ...haha I feel the same way but didn't have guts to say that.... Sometimes I am so frustrated. I know they didn't intent to make me feel I am a bad mom but I sometimes do feel I didn't do enough. I thought I was a mother of 3 kids and I should have all that experience to raise my son. He has down syndrome and has developmental delay. It's like I have to learn a different way to raise him. He is 26 months and still can't have any solid food (airway issue/doesn't like texture/doesn't know how to chew). He has PT/ST/FT now. <br />By the way, my son is a very handsome boy and Pip is a very beautiful girl too. hope one day they will meet... hope I could attach his photo here though....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-89690154206877637832013-10-30T21:20:05.798-04:002013-10-30T21:20:05.798-04:00So nice to know I am not alone on this. Thanks T!...So nice to know I am not alone on this. Thanks T! :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-41831362026209623542013-10-30T21:15:40.520-04:002013-10-30T21:15:40.520-04:00We have a great team for our Piper. She is 19 mont...We have a great team for our Piper. She is 19 months old and has Down syndrome. Everything happens in our home and they are so supportive. BUT I still wish she didn't need it. That she would just be able to do all the gross motor stuff without practicing it over and over again. That new skills would just emerged. Tara - you sound like a great momma! Pips and Noal are fortunate to have you.Meltjiehttps://www.blogger.com/profile/08981369654278504462noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-46208043825875061122013-10-30T21:08:49.490-04:002013-10-30T21:08:49.490-04:00I feel very fortunate that all my Piper's ther...I feel very fortunate that all my Piper's therapy is in our home. The ladies I work with constantly tell me that I know my daughter best. They are very supportive. BUT still I wish we didn't need them at all. That she would just pick things up like all my other kids did. That we didn't have to practice the same things over and over again. It is overwhelming at times.Meltjiehttps://www.blogger.com/profile/08981369654278504462noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-30793722300183417772013-10-30T20:36:22.452-04:002013-10-30T20:36:22.452-04:00OMG - I know exactly how you feel!! I have many o...OMG - I know exactly how you feel!! I have many of the same feelings and I never realized it until reading this blog. Due to insurance coverage, we had to drop my daughter's feeding therapist at the beginning of the year & I meant to start up with a new one but still haven't done it. I've been avoiding making the appointment and I'm sure its because there is a part of me that just doesn't want one more therapist.Annenoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-56917507213617885872013-10-30T20:30:58.377-04:002013-10-30T20:30:58.377-04:00I would be the same way! You know your baby better...I would be the same way! You know your baby better than anyone. My sister is an OT and I'm proud of her, but sometimes I just want to tell her that it isn't all about what you learned from the books!! You are an amazing mom and your honesty is so refreshing!! tjbatchelderhttps://www.blogger.com/profile/12033598298440278531noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-59475385083956755562013-10-30T20:30:22.592-04:002013-10-30T20:30:22.592-04:00I would be the same way! You know your baby better...I would be the same way! You know your baby better than anyone. My sister is an OT and I'm proud of her, but sometimes I just want to tell her that it isn't all about what you learned from the books!! You are an amazing mom and your honesty is so refreshing!! tjbatchelderhttps://www.blogger.com/profile/12033598298440278531noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-38730061990520285972013-10-30T20:26:33.114-04:002013-10-30T20:26:33.114-04:00Don't be too hard on yourself Tara. You're...Don't be too hard on yourself Tara. You're doing what is best for Pip and everyone that reads this knows it. We all have good days and bad days. I can only imagine how much you hate some aspects of this journey but know that you're the best mom she could ever have. Hugs to you. Jill (mom's friend)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-60046157346363796662013-10-30T20:25:12.816-04:002013-10-30T20:25:12.816-04:00Perfect write Tara!! I would probably feel the sam...Perfect write Tara!! I would probably feel the same, being a strong mama , yes you need the extra "help"(therapy) if that's what you want to call it. But you are also her mom.... You know her best!Anonymoushttps://www.blogger.com/profile/14525237972572232158noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-7161714502594183682013-10-30T20:15:58.834-04:002013-10-30T20:15:58.834-04:00First time commenter.
I totally get the therapy t...First time commenter. <br />I totally get the therapy thing. When Everleigh was younger like Pip, I used to have a huge hate/love relationship with therapy too. It's totally normal. Just remember that do or do not, Pip will get there in her own time, do things on her own timetable. Sometimes all you need is to just be. Breathe mama. It gets better.<br />Ps. Pip is SUPER cute. And look at the hair on Noal! Love it!!Anonymoushttps://www.blogger.com/profile/11785039319084868298noreply@blogger.com