Tuesday, June 29, 2010

Rough Waters

Any parent knows that raising a child has it's moments where things are up and things are down. It's the ebbs and flows of life in general. Raising a child with special needs is the same way, but with it's own set of challenges.

I have been having a really rough time with Colin's feeding issues lately. I get choked up just writing about it because it is something that I have been incredibly frustrated with. I get even more upset because I feel that I shouldn't be so upset since Colin does so many wonderful things, he has great health, and he makes us so incredibly happy. Those things are such great reminders on a daily basis and they do help to overshadow meal times.

These difficulties remind me of visiting the beach (if you're someone who loves it as much as I do). There are those beach days that are just perfect and make you so happy just to be there. The temperature is perfect, there's a nice breeze, the water is warm, and the sun is shining so brightly. It might be a little bit too hot or a little bit too chilly, but you would never know because it's otherwise beautiful. However, there are those days where the water is rough, it's too cold, the winds are strong and it's just not comfortable to be up there. Those days don't happen that often but when they do, it's frustrating because you love the beautiful days so much. One thing that remains the same is that no matter what the day is like, you simply love the beach. It's your favorite place to be...

I am so proud of Colin for the progress he is making in so many areas. I don't want this venting post to overshadow those things...but, mealtimes are such a struggle. The feeding therapy assessment was great and we got a lot of great tips, but we are home now and trying to implement them is difficult. We are waiting to see what our insurance will cover in terms of outpatient services at the specialized hospital, and I am waiting to see what EI will help with in terms of getting an OT assessment.

I have been food processing my little heart out trying lots of new things with him. Some things have gone over really well, while most things it's a fight to get something to stay in Colin's mouth. He complains if you try to get him to self feed with the spoon (which he CAN do, but has a mini-tantrum if you put the spoon in a place where he can grab it, even though he has often put it in his mouth before). He will NOT self-feed at all (even things he loves like ice cream). One day he will eat something really well, the next day he will refuse to eat it. Most days he can suck milk up fine, other days all of the liquid falls out of his mouth (although, he loved the milkshake he had today and I can assure you that NONE of it dripped out).

I know that we have had lots of mini struggles along the way and we have overcome them. I think things just feel so difficult right now but this is the current struggle. However, it's starting to make me dread mealtimes (and make me more emotional) to have to keep pushing and worrying and fretting over quantities and calories and varieties and make sure Colin is actually eating enough.

So I ask all of you who have been through this and/or are still going through this...

Do you have any suggestions on how to get Colin to start self-feeding?

What has worked well with your children?
Thanks for your help!


Deanna said...

i'm a year behind you, so i don't have any suggestions, but i just wanted to let you know that i know how you feel. my daughter addison is almost five months old and she has had a g-tube since she was 3 weeks old to make sure that she can get proper nutrition. i have slowly taught her to use a bottle (and i mean sloooowly) and she is now taking all feeds by mouth but still takes forever to eat! i hope you figure out how best to help colin. i know that feeding issues can be super frustrating. (he is adorable, btw!)

ch said...

LC is becoming a beastie about hijacking the feeding utensil and then refusing to use it properly. It becomes a horribly messy drumstick, but not a food delivery device.
Her feeding therapist recommended just giving her a spoon of her own to do with whatever she wants while I'm feeding her with a spoon of my own. It has actually helped in distracting her. Then, if I want to focus on her actually using a utensil, we make more of a game out of it. We leave the high chair completely, get down on the same level (LC on her bottom, and me on my tummy...so we're at the same eye level) and we have little bowls of whipped cream. We each have a spoon and just take turns taking bites, she feeds me, etc.

I can also say that, of all the kiddos I cared for with DS when I was working in educational and childcare settings, I rarely had proficient utensil users before they were 3. So don't beat yourself up too much. I'd focus more on safely chewing and swallowing and if he's doing THAT, then you're really ahead of the game.

(That said, I have to feed his Royal Fatness all babyfood through his bottle. He will NOT abide anything other than cereal delivered via spoon. Any tips for THAT???)

Cathy said...

We have been visiting a feeding therapist the past month. We are blessed that our insurance pays for it. I just realized that I hadn't blogged about it...just shared with my Facebook friends. I think I'll write a post about it later today if you want to check out some of the things Lily's ST has been teaching me. Lily has made great strides in the 3 weeks we have been going.

Hang in there. It will happen!

Lori said...

Oh, Kelly - my heart goes out to you. I know how frustrated you must feel.
I wish I had a good "tried and true" technique, but what worked for us was finally persistence. We did lot of work with the Nuk brush and the vibrating Star teether to get her used to chewing.
Anna still is not a proficient utensil user (heck - neither are Paige and Charlie - ha!), but I did find that starting with a fork was easier for us (or, at least, a little less messy)
Hang in there! There will be a dayt when you look back at this post and marvel that you were ever so concerned in the first place.
Prayingg for abreakthrough soon! {hugs}

Wren said...

Try not to get too frustrated (I know, easier said than done), but to me it sounds like he's doing great and he will eventually figure out the spoon. Sutter isn't ready for self feeding yet, but I can tell you that my very typical 2 year old is currently eating shredded wheat with his fingers despite the fact that there is a spoon in the bowl! I give him utensils at every meal and sometimes they get used, but for the most part they become drum sticks or don't get touched at all! We also have days where he will eat something and LOVE it, then I go to give it to him the next day and he will refuse to eat it....makes me crazy!

I guess what I'm saying is even typical kids have these same issues and Colin is still really little to have mastered the spoon! Keep trying and one day he'll get it!!!

Lacey said...

I wish I had some great advice for you, but having a tube fed baby doesn't yield much advice! I know sweet Ella wont eat anything solid, a bottle is still her only source of nutrition and she's over two! I'm not sure what Denise has in terms of help for Ella.

Adrienne said...

Kelli- if I understand correctly it's not just the spoon it's the fingers-right? He doesn't want to feed himself, right? If so, that's Bennett too. First I'm going to tell you, try not to get too stressed about it but I know it's so hard not to because I was EXACTLY the same way with Ainsley- she was my first and I really thought if she didn't eat how she needed to she would starve herself unless I gave in and fed her everything. She eventually got it and I will say Bennett is a bit worse as far as finger feeding than she was but I'm really trying to realize he will get it and more than likely he won't be a 5 year old that is spoon fed- I hope!!;) Our OT is now solely working on feeding as our ST doesn't have a big background in feeding. Today we put whip cream over one of the photo books I made and plopped some right on Ainsley's face (it's covered with plastic) and said "where's Ainsley?" and he actually put his hand in it to find her. He didn't put his hands to his mouth but at least he touched the food. Again, I'm assuming this is Colin's issue not just the spoon holding. I do let Bennett hold a spoon while I feed him and a couple times he will pick up the spoon I'm using and put it to his mouth but if you try to make him touch food or pick up the spoon he freaks! The OT that evaluated Bennett at his 1 year eval said to really start with letting the child play with the food. They have to get comfortable with it on/in their hands and on their tray for that matter. She said to string up some cherrios and tie it to his highchair and see if he'll at least play with it and then with time start to chew on it. I know how you feel but feeding is a big time control issue with both the child and the parent and ultimately the child will win so it's really important not to get stressed or upset in front of them because they will associate eating as a stressful event. It's going to get better Kelli- it will, it's just going to take some time.

Kelly said...

Oh Kelli, I know how you feel......but it will get better, WHEN Colin is ready! I always put food on Landon's tray, even if he thinks it's a toy. It started off with him playing with it and whipping it across the room, or at me!! lol I also always give Landon a spoon of his own, while I feed him with my own spoon. Of course he fed every part of his face, BUT his mouth! The trick......GROUNDHOG DAY!!!! Keep doing the same thing over and over again!! I try not to change things very often until he grasps a concept. I'm always afraid of confusing him and taking those dreaded 2 steps back. Landon has a very limited menu, so I started with pushing him to hold his own bottle. Once he got the hang of that, I moved on to the honey bear cup. Getting him to drink from a straw was a 50/50 chance. I am happy to say, that with some very helpful tips from (Laura, Ann & Whitney, Up, Down & All Around), Landon is finally moving in the right direction. Landon loves to feed himself cheerios, puffs and toast with his hands. When it comes time for the spoon, I go back to the baby jars. Landon is familiar with the texture so all he has to do is concentrate on the spoon. I always wondered if he got confused at the beginning because I was trying to teach him too much at once....a new textured food, holding a spoon or feeding himself. Keep it basic and try to limit too many varying techniques at once.

Hang in there Kelli, I am sure that Colin will catch on soon!!!

Suze said...

I love your beach analogy since I'm a beach lover myself - it's so true, some days are better beach days than others, just like our daily lives have their ups and downs. I think every mom worries about these things that you are stressing about right now. A friend of mine told me her kids were on table food by 8-9 months, so of course I start overthinking why Tommy will only take cookies and biter biscuits for finger foods as he approaches the 10 month mark - not even Cheerios or puffs! I know i'm not in your shoes, but having a niece and nephew with special needs who have had similar struggles, I can tell you that while it took a little extra time, they've both overcome so much so I know Colin will get there when he's ready. With Tommy, I decided to put a few things for him on his tray each time, and when he's ready to try it, he will. And you ae allowed to feel frustrated one day and then totally perfect the next. Just like a beach day...here's hoping you have many awesome beach days the next few months!

amy said...

kelli, i never really had any feeding issues with ben but i know the same frustrations from other issues we did deal with. it is tough, this job of ours, raising children. and when you have setbacks that feel so major and deflating, it can be very upsetting. as simple as it sounds, i think the best thing you can do is be patient, keep persevering, and love that colin boy as much as you can. in a short while, i promise you, he'll be eating up anything and everything and you'll have long forgotten this frustration and moved on to something else! :) it's easy for me to say and much easier for you to do. i know. if colin will eat ice cream, then continue to give him ice cream! every night if need be. then add some that larger chunks of fruit, etc. he will do it. i promise you. BIG HUG!

Emily said...

I loved your analogy of the beach. Couldn't be more true. I wish I had some wonderful advice. Just keep doing what you're doing and know that you are a fabulous Mommy!

Linnea said...

My son has Trisomy 8q2. I have no advice. What I want to say is thank you for your honesty. We have had our son a month and I hate to complain since we went through Hell during our adoption journey. My son will not feed. He is 4 months old and they keep threatening a feeding tube. His tongue is in the way and too large and his muscles in his mouth dont suck, well not in the way the should anyway. He kicks, screams flails his arms and makes himself so stiff and rigid. Feedings are traumatic here. It is so frustrating, some days I think FINE! Just put in the tube already! Was your son like this as a baby?

I feel your pain.

Be blessed

desciseaux said...

Hang in there, Kelli! I know it's tough but all of your efforts will someday amount to the grand success you're hoping for! The baby steps will get you to your destination just as well as the grown-up steps, they just take a lot longer.

I don't know if it would help, but there is a great training spoon that maybe Colin would like (even if it's just to hold on to while you feed him with another spoon, as someone else suggested):

The only suggestion I have regarding feeding is perhaps hold things out to him in the palm of your hand. Every now and then Penelope will get fussy and not want to feed herself, and she will NOT let us feed her anymore (unless it's like soup or yogurt). If I hold the piece out to her, she'll pick it up. Maybe Colin would be interested in trying to pick something up if you were directly offering it to him?

Anonymous said...

Kell, hey there! It's Cindy B. Just wanted to let you know I am thinking of you. Shoot me a message on FB and I'll give you my number. What Children's location are you going to for out patient ST (Toms River??)?
I may be able to help out and reach out to co-workers too. I'm an OT on the infant toddler team in Children's specialized hosp in New Brunswick......small world :-)

Kristin said...

Love all these comments. Max will shove food in his mouth using his fist, not a pincer grasp. But he won't hold his bottle for anything (unless to throw it across the room). But my now 4 yr old never held her bottle either. Max won't suck on the honey bear straw either. I think every kid does their own thing on their own schedule. Sorry, no advice here.

Erin said...

I'm not sure how Collin's fine motor skills are but if they aren't real refined it is going to be difficult for him to self feed. Lucas is very delayed in fine motor and still does not have a pincher grasp. He will use his palm to rake food and put it in his mouth but I still spoon feed him the majority of the time. As far as spoons we use a stick spoon and pour some applesauce on his tray and just let him play with it, no pressure. If he gets it in his mouth, great, if not it's ok too. I know how frustrating feeding issues are, I thought Luc would be on purees forever. We did a lot of hard muchables like beef jerky, carrots, dried papaya with every meal so he could get lateral tongue moments for chewing. Now he is on all soft table foods, the only thing we are still working on are hard table foods like crackers. Good luck Kelli, he'll get it!

Katie said...

Ha! Self feeding, what is that? Everything I give Jack (21 months) ends up on the floor. I feed him everything. I'll work on it, along with spoon feeding when I don't have a newborn and a kid who loves to give it straight to the dog. =)