Monday, September 28, 2009

Feeling discouraged . . . very discouraged.


Feeling like something of a failure, actually. I remember very early on, when we received Finn's diagnosis of Ds, one of the thoughts that went round and round in my head for a while was, "I am not qualified to be a parent of a child with special needs." That feeling has been creeping back up on me lately.

First of all, I am beyond frustrated with the whole nursing situation. He bites me every single time, and it has become so stressful and unpleasant - ugh. It's like torture. I am so sore all the time, and I just can't seem to get it through to him that "No biting" means NO BITING. I would take this as a clear sign that it's time to wean, except that he doesn't get fluids by any other means right now, except for whatever fluid content is in the baby food he eats. I am trying very hard to get him to drink from a cup or straw, but he's soooo resistant. He gets really mad and pushes/smacks it away. I am at a loss. I really don't know what to do. Do I tough it out and keep trying to nurse him so that he gets fluids, and hope that someday soon he'll stop biting the shit out of me? Or do I throw in the towel and hope that he's getting enough fluids from the food he eats? I really am just so sad and frustrated about this. I had hoped to nurse him longer than this, and I certainly had hoped that it wouldn't end on such a bad note.

In other areas, he just seems to have plateaued lately. He's not making any progress that I can see. His babbling has not progressed to any discernible words. He doesn't use any signs (although I admit that I haven't pushed signing at all). He crawls all over the place, but he's been doing that for months now, and he's not progressing to the next step - walking. Or even cruising. Or even standing. I can't even get him to stand supported anymore - he was doing that, but now he's just plain resistant to all of it. And I am feeling like an utter failure.

Yes, we did reduce services recently. I thought we were doing the right thing. And I hate it - hate it! - that I find myself second guessing this decision now. I really believed (and still want to believe) that we could, as a family, help Finn be the best he can be with minimal intervention. I don't want to be a slave to services. I don't want his childhood to revolve around therapy. Is he "stuck" right now because he hasn't had any formal therapy for a few weeks? Or would he be in a holding pattern anyway, regardless of therapy? I just don't know.

Discouraged. Very discouraged.

22 comments:

heather said...

I just left a comment about this on Laurie's blog not too long ago. She had the same sentiments about Dylan. Personally I would forgo the nursing. I've had a few of my babies do it and there is nothing worse. I am scared the whole time, waiting for the bite, not that my anticipation helped lessen any of the pain. Morgan didn't take a bottle or sippy cup when I quit nursing. She was 12 months old but it only took her a day to figure out the bottle once she was thirsty enough. Have you tried a sippy cup or bottle? Don't worry so much about the straw cup right now. Morgan has used all of them and doesn't have lower tone or tongue thrust because of it.

It is so easy to get discouraged. The milestones come so much slower and the progression is difficult to see. There are times that I see huge progression with Morgan and other times where I feel like nothing has changed. He is learning and growing. He will learn how to drink out of a straw cup, cruise on furniture, stand up and even walk. Maybe not tomorrow but soon! I always have to remind myself that Morgan is not in a race. She is on her own journey and can take her own sweet time to accomplish the things she wants to do in this life. Try to enjoy Finn and the journey. I know it is so much easier said than done. But down the road you will understand that this baby-time was such a fun, memorable experience and won't remember all the worrying and doubts.

Also I had to be careful to not compare Morgan with other kids her age whom had Ds. It was easy to not compare her to typical kids. I knew that wasn't realistic. But I think blogging has made it even easier for new moms to compare than when Morgan was a baby and blogging wasn't around.

We've ALL felt this way. Keep your chin up! You and Finn are doing awesome!

Sasha said...

Hang in there. Yes somedays are difficult. You could switch to formula if you needed to for a while. Or you could pump. Yes I know it's not ideal and takes a bit..but then he could still get the nutrtion. I am on my 10th month of pumping. I have just in the last couple of months started to wean of bm and do more formula. I do about half and half. It would give you time to heal from the bites and relax with Finn more. Do you think he is teething? Or hungry? Maybe give him something to bite on-some toys ect. I have no real tips on the walking as my little one is still trying to master sitting. I don't know about you but I couldn't do without my PT services. They guide me in what my next steps are. Maybe you could not cancel them but have them for fewer sessions ie. once a month or twice a month instead of weekly. Hang in there mama. Maybe if you could get a little break for you that would be good. Some time out and a special treat for all the hard work that you are doing!!!!

Khourt said...

He is probably taking the time to relax and enjoy his newfound freedom of not being pushed.

Beth said...

Oh, Lisa. I can feel your frustration all the way across the internets. I don't have any suggestions about the nursing problem. I was an epic failure at nursing. My impulse would be to try a bottle with pumped breast milk or formula if you are worried about fluids and don't want to continue being bitten. Ouch!

On the walking, I too was impatient about that. Jude was crawling and standing at almost the typical timeframe, just behind his twin. I thought, oh he'll be walking by 18 months at the very latest! 18 months came and went. Then, at right around his 2nd birthday, he started walking like an old pro. By the time he was 3, he was running and jumping. He is FAST. He doesn't even qualify for any PT and hasn't for a long time.
Take heart.
And trust your instincts. I doubt the therapies have anything to do with this. Those developmental milestones will come, just on a much slower time frame than we want sometimes. Just try to slow down along with Finn and enjoy him while he's still a baby. It doesn't last for long!

ABandCsMom said...

I think Heather says it best in her comment. Our kiddos milestones come much later than those of typical kids. However, they do reach those milestones. In their own sweet time. Remember, it is sweet time. Precious time. You're frustrated. We can all relate to your feelings. But Finn will get there. He will!

It sounds like you need a bit of a break. An afternoon away from all your worries. It will do wonders for you.

Chin up! You are NOT a failure.

Cate said...

will he take a bottle or cup from someone other than you? between the breastfeeding and the tension, maybe someone non-mom would be better to try. (Assign one of the other kids? make a game of everyone drinking from straws, see if he'll play?)

it will be okay. your instincts are good. he'll get through this, and so will you.

Laurie said...

I hear you, Lisa. I really do.
You have already gotten lots of good advice and I wish I had some more words of wisdom, but as you know, we are on the same ride!!

Ah...try not to stress about the milestones. (Ha! Listen to me - as if I dont!) But really, it sounds like Finn is doing SO well! The fact that he is crawling is VERY impressive, I think!! See, I just got a little lecture from our PT that we need to "Up the ante" with Dylan in regards to crawling. Whatever! Im not going to force it, Im really not. It'll happen...when it happens. Same with Finn - all of a sudden he's just going to get up and walk! He will!

The nursing must be so frustrating!! I know you prob dont want to do a bottle at this point, but if you had to? IDK...can you ask your pedi for suggestions? Or maybe call your OT and see what he thinks? I know you are in transition with that stuff, but he may be able to help you out as he's seen Finn before?

Oh Lisa. This is just not easy, is it?

One day at a time, my friend. ((Hugs))

Eternal Lizdom said...

I wish I had advice or experience to share... all I can offer is {{{{{hugs}}}}}.

Hector and Jennifer Varanini Sanchez said...

If it's any consolation, crawling is one of the BEST things for Finn and the longer he does it the better. One of the down sides to walking early is that babies usually stop crawling all together so truly the longer he crawls the better and he WILL walk eventually :) Enjoy your little mobile boy, he can get wherever he wants and he can find things that stimulate him and he is able to feel independence and freedom. All the things that walking can do he can do on all fours :)!!!! Crawling really is something to celebrate.

Pam said...

I've been reading your blog for a little while now. My daughter has Williams Syndrome (a somewhat rare genetic deletion, though I argue it's just variation!). Your blog has been so helpful to me. I can relate to a lot of your frustrations and it's lovely to have someone out there expressing them. One thing that I find very difficult is knowing what's best for my daughter (more or less therapy? preschool or quit my job?) It never seems very clear to me. One minute I think I have the answer. The next minute I think the complete opposite. I don't have other children, but I imagine that most parents feel this way on some level. It's just that somehow the stakes feel higher? Is that correct? I'm not sure. But I can certainly relate to the frustration.

BLOOM - Parenting Kids With Disabilities said...

Hi Lisa: I had to give up nursing with my typical daughter at nine months for the same reason. She would not stop biting me! I would trial stopping the nursing and see what happens with the bottle of sippy cup.

Take care! Louise

Lisa said...

Chin up, soldier. Don't second guess yourself with reducing services. Finn is just going through a phase. From experience, it sounds like maybe he is really bothered by teeth working their way down (or residual fluid in the ears?). He's swatting at things (and biting) because, like you, he's frustrated. If he isn't feeling great, the skill development may be on the back burner for him. He is making progress (even if you are not seeing it right now) and will pop up with some new skill when you least expect it. Be patient. All the stuff (standing, walking, etc.) will come.

Only you can determine whether you can be okay with not nursing. I think you've given it a great shot, and have already given him the bulk of the benefits of nursing. I agree with others here...he is likely to try drinking from a cup (or bottle)if that is the only thing offered.

If you wanted to, you could pump some to start so that he'll still be getting breastmilk but not biting. Then maybe transition him to another type of milk.

It will get better!

datri said...

I think Finn would have probably plateaued anyway. We've gone through it countless times with Kayla, and she's always had tons of therapy. As frustrating as it is, Finn will do what he wants on his own time. LOL, we're still waiting with Kayla.

Tara said...

I want to second what Jennifer said about crawling. It is actually very beneficial for him to be crawling for a long time. Crawling helps make those vital brain connections that will work very well for him when it comes time to learn to read, write, and do math. This holding pattern is a good one, and in my opinion as an OT, he would be in one now with or without therapy services.


One day at at time. He'll get there and you are doing great!!!

paws2k3 said...

My son is exactly the same age as yours (born July, 11 2008). Ronan was born special too-- Amyoplasia.
Like you, I had a completely natural birth and no tests while pregnant, so it was all a complete surprise. I love your blog and can really relate to a lot of what you say.
our blog is thelittleseal.blogspot.com
Anyway, after that long introduction-- what I want to tell you:
Ronan went through the same biting thing during the past month or two. I actually considered that I may need to stop nursing--- and then one day the biting stopped and I'm so glad I was able to push through it.
I feel for you!

Julie

starrlife said...

I think everyone has given excellent support and wisdom! My own and my husband's experience is that having a kid with DS forced us to give up our own needs and expectations and just let things go at her individual pace. We have services but at our own comfort level and based on our own lifestyle and values. You are an excellent mother and perfect for Finn! This see saw of anxiety and peace is the journey and so perfectly normal. I suspect that all parents of all kids have some degree of it, it just is enhanced and louder for the more overtly challenged kids?

Terry Family said...

Hi Lisa, I'm new to your blog so I don't have much background on your decision to change your EI services but my son Nathan, is 20 months old and has Ds too. I understand not wanting to have your life revolve around therapists! I feel the same way too but I know how important it's been so I schedule all services for first thing in the morning before nap time when he's fresh and then we have the entire day to ourselves!

With regard to walking ~ I couldn't wait for Nathan to walk too and now that he is I'm waiting for him to start talking and once that happens I'll be waiting for something else. Will it ever end? When do we just stop and live in the moment and thank God for what is?

Alisa said...

Biting--ouch! When Lena did this, I immediately unlatched her, sat her on the floor, and left the room for a minute, trying to be as UNresponsive as possible. (I know--it's SOO hard not to yell out!) Hoping that she would see the cause and effect as "I bite, I get left alone". It took a while, and I don't know if that's why she stopped or if something else was causing it or what, but it worked.

When we finally went to the cup, I used the rubbermaid "box" with the hard, flip-up straw. The key was to mix the milk (either pumped breast or otherwise) with yogurt to thicken it. We started with a mix of almost 50/50. And that was what she needed to get the whole suck from a straw/swallow thing. I realized that no bottle or cup was ever going to replicate the flow of milk from the breast, and so she had to learn a new skill-how to handle a thin liquid in her mouth. By thickening it, it gave her more ability to control the flow. It helped that she really loved yogurt, so she was interested in the cup of milk from a flavor standpoint, too. We very gradually (over many months!) reduced the yogurt until she was able to drink straight milk and water.

Good luck, and don't worry a bit about the plateau. It just means he's consolidating skills and will probably show some big jump soon. Likely, the big jump will happen two days after a monthly therapist visit, just to kind of mess with your head! Hang in there!

ds.mama said...

Lisa,

Summer is a couple weeks older than Finn and we are not crawling or pulling up. She goes through stages of bursting with new things and then nothing new or even regression for a few weeks. You are probably just more focused on this now b/c you reduced services.

Anyway, you are soooo not a failure. I can't even believe you are still nursing your little shark. I hear you about the "no means no" thing. I am nearly bald with Summer yanking my hair out all the time no matter how many times I say "no pull".

We had a lot of success with the NUK straw cup because I could "load" the straw and she got instant results. Also the suck it takes to make it work seems similar to sucking a nipple, so maybe Finn will go for it. (You could always wear the cup under your arm for a while so it smells yummy like mommy... maybe he would like it better that way ;-)

Carla said...

No advice, just hugs!

Mel said...

Hey there, don't beat yourself up. You are doing a great job, and having all those siblings for Finn is worth hours and hours of therapy- there's no substitute. A friend of mine had the same feeding problem, and she got around it by letting the big kids have a bottle and getting her boy to drink it with the older ones, which worked a treat. She was just worried when she had a builder around and her 5 year old was having a bottle! Only needed to get them to do it for a couple of weeks as the modelling was so strong and her son just wanted to be like the others.

In regards to progress, Luke is getting stubborn and everything has to be his idea. He is getting resistant to practising walking too. That is progress in itself, as that is a new level of maturity, so there's some progress for you-lol! He is definitely moving along. We use the Downsed journal to monitor progress- available free online at http://www.dcsf.gov.uk/everychildmatters/healthandwellbeing/ahdc/earlysupport/resources/downloads/downloads/
Might be worth a look so you can see areas where he IS making progress- and there will be progress :)We also use their See and Learn programme for language and sign- Stage One- I think it's available in American sign now too- and all ready to go for you.

Hang in there- he's great and good things take time.

stephanie said...

I have no words of wisdom on nursing, I stink at it. I will certainly congratulate you for sticking with it for so long. Is it possible to give a bottle or sippy occasionally to give you a break? The crawling, and I just found out about this myself is probably really good for him. Emilia is pulling into a stand and her PT is discouraging it. she is really pushing her to crawl because our kids are loose to begin with, the crawling actually helps the joints to hold tighter. and if you think he needs more, your in control, you know what to do. Practice a little more signing,or mix things up a little. Therapy is boring, I really have to make it entertaining to me, Emilia loves it she's just a baby. But if I'm going to help her I can't be bored either. But remember the older Finn gets the longer it will take to learn new things, simply because the things he is learning are harder. Plus there is no clock ticking, it's all in his time. Feel better, your a great mom who loves her kid.