Wednesday, July 14, 2010

I have no idea what I am talking about.



Over the past couple of days, Dylan has made serious progress with FOOD. Real, real, food! I am still trying to figure out how or why this all just happened, and I am left with the belief that he simply was not ready before - and now apparently he is.

He has been eating (all gluten-free) breakfast bars, carrot muffins, bread with hummus, puffs, Berry Fiddlesticks. I have been adding crumbled up Baby Mum-Mums to all of his baby food as well to add texture. He's totally into it! Jar by jar, we're cutting back on baby food - finally!

This feeding success was accomplished without the help of an OT. Or any Early Intervention specialist. Yes, I used some of the ideas from our Feeding Team, but otherwise it was all Dylan.

So, it leaves me wondering lately about Early Intervention services. Shortly after Dylan was born, I was told time and time again (and agreed) that more is better. "Give him every opportunity you can to help him progress". Now, I just...I don't know. Things are changing and I just don't know if more necessarily is better anymore. I had wanted to cut back a bit this summer because we had been going full swing ever since Dylan came home from the NICU. Then, I wanted them all here and I wanted them here often. I felt like it was my job, as Dylan's mama and his advocate, to get as many services as I could so that he could start early. I didn't think there was a choice, and even if I did, I wouldn't have made a different one because I believed in what we were doing. I thought it was best. I didn't know...I didn't know how to help a little one with Down syndrome.

This morning, after we had taken some time off from EI to vacation at the cape, we had Speech Therapy. Cassidy. was. AWFUL. I mean, wow. And Dylan was tired and in no mood to do what he was suppose to do. I apologized for Cassidy's behavior and inside my stomach was churning. Oh, I did not miss this. His ST kept saying things like, "Don't worry, this is normal." and "Kids who have siblings with Special Needs sometimes have feelings that they can not quite figure out."... And I felt, as I have been lately, thoroughly confused. Confused with it all.

Cassidy has many activities that are special and are just for her - it's not at all like our lives revolve around Dylan because he has Down syndrome. But yet, I can't help but wonder if perhaps at times I am causing more stress, more chaos, more confusion - especially for Cassidy, by having EI here. Cassidy acts up, even when she is included. She knows that they are not here for her. I stress and worry and wonder what in the world they must think of us when they leave.

I believe that with Early Intervention, one of the most important pieces is the carryover. Dylan is not going to walk any sooner because he has PT for an hour once a week. I know that I must work on the things that they suggest - and for the most part, I do. I do. But sometimes, I don't want to. Sometimes I don't want to think about any of it. Sometimes I just want to pretend that we don't have to deal with delays and Early Intervention. Sometimes I just want to live our lives.

Sometimes...I get confused as to what I am doing and what is best. What is best for Dylan, for Cassidy, for me, for Dave. And I don't know the answer. I just know that I really don't like feeling the way that I did this morning after our Early Intervention session. As our ST drove away, I turned to Cassidy and said, "You know, that behavior was not OK Cass. Why did you do that?!". Cassidy started to cry, real, genuine tears, and said, "I'm sorry, Mommy.". I walked away because my own tears had started. I felt so guilty, so badly for her. But yet, we were heading out the door to her activity now - swimming lessons. She said, "Mommy. I'm trying to say that I'm sorry...". I hugged her because I believe that she is sorry. I know that it's not easy for her, but...

Sometimes, I just don't know.

16 comments:

j*e*n said...

We experienced similar things with Ainsley. It would seem like therapies weren't really helping as much as having a supportive family & sitter. But we continued with the therapies incase there was something that we needed help with. And it seemed to go in seasons; sometimes therapies went well, other times not so much. Gavin struggled with knowing that the therapists weren't there to see him, also. This got better during the school year when he was at school when the therapists visited. Maybe you could swap some time with another mom to give Cassidy somewhere fun to go while Dylan has therapy. I understand that she has her own activities at different times, but Gavin had trouble separating & seeing that we were doing our best to keep everybody happy and active. Doesn't sound like much help, does it? We're there, too. You have to do what is best for you, even if that means doing things differently sometimes. :)

Kelly said...

Oh Laurie, the fact IS, there is NO right answer. Each family is different just as equally as each child is. It seems like you gut instinct is trying to tell you something. I always say that if it isn't broke, then don't try to fix it. But if you're not at peace with it, that may be YOUR sign that something needs to be fixed/changed.

I know exactly how you feel. I did not do a post on it (I may in the near future), but I have found that the BEST thing for Landon is being at daycare. He is so social and is just so happy when he is with other kids. Breaking this new to my father and mother-in-law come September is going to be difficult. Landon is with each of them once a week, at daycare 2 days a week and home with me on Fridays. He receives services 5 days a week, including the 2 days he's at school(his therapists go there).

You know what, Landon does MUCH better in his school environment than he does at home. As much as I have struggled with sending him to daycare vs. staying home with family.......what's BEST for Landon is school. As moms (and advocates) we ultimately DO what's best for our kids. And when we struggle with some of the more difficult choices, OUR KIDDOS, will guide us!!

Hang in there, Laurie........you, Dave, Cass & Dylan are going to be just fine. Everything will fall into place.

Jen said...

My husband always says no one knows what our children need better than we do. It's quite humbling to allow therapists into our home. Sometimes the place is a mess, sometimes the other kids misbehave, sometimes we might not feel like being encouraging. So many services are offered to our children, but more is not always better. We've chosen to have PT once per month and then EI once per month. It's just enough to allow me the opportunity to ask questions when they come up, but not so often that I feel bombarded with suggestions of what I should be doing. You hit it on the head when you wrote that Dylan was responsible for his feeding/eating progress. As his mother you know what he needs to do: eat, sleep, move, sign/talk. Encouraging and cheering his accomplishments is far better than pushing and expecting him to meet the next "deadline". Hang in there! Us moms with Ds children are all in this together. Stay strong.

Katie said...

I think at some point, everyone goes through this. I remember at the beginning, meeting Moms who pushed using all therapy services, plus the extras like aqua and hypo (not sure if I am spelling that right), but it means therapy on a horse. We have 5 therapies a week and that's 5 more hours that Jack is working out compared to me! Some days are more productive than others. Just do what you feel is best for your family. If you want to cancel or take a summer hiatus, do it! We don't have an older sibling, so I can't even imagine what that would be like. I know #2 will have issues soon enough, of someone coming over to 'play' with Jack and not him. You are a super smart, great Mom. I know you will make the right decision and sweet Dylan will lead you to it. Good luck.

Rachel said...

I have always felt that the ECI team is MY teacher. I was clueless as to how to help Aubrey best when she was born, but now, I am feeling better equipped, especially thanks to blogging. I feel like they are welcome in my home as long as I feel like they are continually teaching me and Aubrey is benefiting, but they come when I want them too and as often as I need support and we are always changing things up. I am not afraid to say "I need my speech or pt here more often right now" or "We are doing great and I think that we can lessen your service". I always feel that the ball is in MY hands and that they are here to accommidate MY needs and schedule.

I will admit that with three others home now during the summer, it is harder, but that is the one time of day that they are allowed to watch tv/movie. I reserve it for that time so that we can actually work, but they know that if they interupt our therapy, they don't get tv/movie the next day. It is a privilage for their good behavior while we work downstairs. I do find that sometimes it is good for Ella to sit and model things with me while Aubrey sits with the teacher and Aubrey loves that, but it doesn't always work!

Sometimes just being with other kids who are a tad older is helpful and she picks up on both good and bad habits. Maybe a playgroup of some kind to fill a gap would be more helpful. Good luck!

Looking Up said...

I think so many people can relate to how you are feeling....I know that I can! My 19 month old has DS & I go through these phases where I feel like he needs more therapy ASAP. Then I'll take him to an ST or PT session & I'll often leave feeling like it would have been more productive if I had just kept my son & at home & worked with him myself. Sometimes the whole process can be incredibly frustrating. Iwant to do what is best for my son, but I'm not really sure what that is. Those are the days when I throw up my hands, & say "forget it". Then I take my kid to the park & let him ride on his fav swing while he giggles until he can't giggle anymore. I'm not sure if it's therapy for him, but it sure is for me!!!

The Sanchez Family said...

Just wanted to say I get what you are saying! I feel the same way sometimes...but it's such a quick 3 years before they age out so I just take what we can get right now and there are good days and bad days. I will say that I'm just now realizing that I can say no to something if it's not the "perfect" time for our family so I try to avoid having therapies when the older boys are around to try and decrease the "meltdowns" that occur when everyone is home. I also try and take a little time while the babies are in therapy to either pick up the house, throw a load of laundry in, put the dishes away and just lay down and close my eyes for 15 minutes....it's been working out well this way and I don't put too many expectations on the session and just see it as an extra set of eyes, ears and hands that are interacting with Joaquin and Sofia....Hang in there my friend!!!

Kelli said...

Hi Laurie...it felt good to read your post because at times I completely understand and partly feel what you feel. I say partly because I don't have any other children, but sometimes I wonder about all of the therapists that come in and out of the house. I think that Colin works well with them, and that he is doing well, but I have ALSO realized that Colin is still going to do things when he is ready to do them, on his own time. Despite the fact that he has a PT in the house 2x a week, certainly hasn't sped up any of his acquisition of skills....

...I think there are bound to be those really good days, and those really bad days as well...

Loren Stow said...

Oh I really feel your confusion today! It isn't easy is it? There is no 'right way' or 'wrong way', and even if you've found 'the way' it may all change and become 'the wrong way' at some point.
I can't say what I would do in your situation, but I will say that you must trust your mother instinct, you do know what's best for your children and your family.

I hope that you find the peace and inner clarity to make the best decisions for your own family and for Dylan.

My thoughts are with you and I hope your road ahead becomes clearer and don't forget that things that used to work sometimes stop working and you need to change direction once in a while. It doesn't mean the road you travelled was wrong, it just means that the road you are GOING to travel needs to be a bit different.

Best of Luck!

Cole said...

I've had this same concerns. I grew up as the baby in a family where the middle child had a significant disability.I know the statistics as well-- that in a family with a child with SN 80% of the time goes to the child w/SN. And that scares me- I don't want M to resent A and all the attention she gets. We do the reserving tv for therapies tactic as well. It doesn't always work. And I feel funny bribing her. But she does want to watch shows and it's helpful if she is engaged with something. One of our therapists has a 5 yr old and we've tried having her come to to play w/ M but the problem has been it undoes all the teaching I've done w/ M about cooperating and playing with her own toys and that I'll come get her when it's time for her to come in. I will say I'm lucky that our therapists seem to enjoy both girls and don't act like they mind having M pop her head in and go to say good bye to her and give her a hug when she leaves. In our case it is easier when either- the therapy happens out of the home- so M is at daycare or both parents are home- so one of us can go be with M if she isn't feeling so independant that day. A has been struggling with therapy too- we actually had a couple of weeks off and that made going back worse- behavior wise. I will say this- though- I think some of this is totally normal and not related to the special needs. When we just had M and we would take her out of daycare for a week or so to take a vacation- they would laugh about what a difficult time they would have with her for a few days when she got back and had to get back in that routine. When Dylan is old enough he'll probably fuss at having to sit through his sister's dr appts or swimming lessons or recitals. It's more intensive b/c of the SN and having all the appts but I'm guessing there would be another version of the jealousy anyway- just having to adjust to having a sibling around I think is hard on an eldest child. At least that's what I think today- talk to me tomorrow after our EI visit tonight- LOL!

Cate said...

I always tried to schedule EI for when my son would be at preschool, because it was just too hard. Some fun visitor, with a big bag of toys, comes to your house but not to play with you? Just your younger sibling? Of course that's hard! He was mostly okay if he was here, but it was stressful for everyone.

Angi B said...
This comment has been removed by the author.
Angi B said...

What a great post. I sometimes wonder if EI is "worth it". Worth the struggles, pressure and expecations. Hang in there, and give those adorable little ones a big hug from Jack and me. Love your blog.

Kathy said...

I understand that she has her own activities at different times, but Gavin had trouble separating & seeing that we were doing our best to keep everybody happy and active. Doesn't sound like much help, does it? We're there, too. You have to do what is best for you, even if that means doing things differently sometimes. but thanx.

Sharon said...

I guess I have a different view on this one. I feel EI has been so helpful to me and to Brennan. I truly believe that he would not be eating and drinking as well as he is without the help we received, that we wouldn't have gotten the orthotics that he needed if not for his therapists, and on and on. They have also helped me to better understand how to best help Brennan progress. I do understand that it's not ideal having the other kids around for therapy, but also feel it goes both ways. My older three don't always love hanging around while Brennan has therapy, and he doesn't always love hanging around while we're at their activities. Maybe try scheduling the therapies while Cassidy is at school once school starts again. Or drop or at least take a break from therapies if you don't feel like Dylan is benefiting from them and if you feel like they're causing more stress than good. One thing is for sure - there is not one way to do this. Each parent knows what is best for their child & needs to make their own decisions based on that - not based on what others (EI, therapists, parents) tell them to do. Follow your instinct, Laurie!

Tricia said...

In our experience, cutting back was just what we needed. We cut back right around the time G was 21 months because R was born. Then, when we started back up around 24 months it was clear that G was just NOT that interested. We slowly phased it WAY WAY WAY back for the entire year before she turned three. I don't regret it one bit.