And the milk goes on...

WARNING: What follows is, as my husband describes, a “graphic” description of Kaia’s and my breastfeeding journey. I did not shirk from including details that some may find very comprehensive and personal. I want other moms who are expecting special needs children to find an honest account of the challenges and joys of breastfeeding of a child with special needs. I searched for stories like this before Kaia was born and found few.

So, without further ado, our breastfeeding story:

I was never the girl who knew she wanted to have kids. I was never the woman who knew she wanted to be a stay at home mom. I actually, shamefully now, kind of looked down on women who did. But, there was one thing I always did know. I knew that if I ever did have kids that I would breastfeed. I had this image in my head of me nursing a baby in a rocking chair.

So, when we were told by the doctor that the ultrasound tech had detected that our unborn child had a cleft lip and palate, one of my first questions was, “will she be able to breastfeed?” The doctor said probably not. Then when we got the amniocentesis results back and found out that she had a rare chromosomal syndrome with a primary feature of low muscle tone, it seemed that there was no longer any question of her ability to breastfeed. For the doctors, anyway. Many of the kids with her syndrome needed feeding tubes, they told us. Kids that didn’t even have the complicating factor of a cleft lip and palate. They tried to see with ultrasound how far the cleft extended into her palate. We were told to expect a full cleft including the soft palate. One of the doctors had a child with a cleft and she took a special interest in our situation. She said our baby wouldn’t be able to breastfeed. So did the plastic surgeon. So did the geneticist and developmental pediatrician. I could pump breastmilk, they told me. But she won’t be able to breastfeed.

We made a decision to deliver at a facility that had a level 1 neonatal intensive care unit instead of the suburban hospital where our regular ob/gyn delivered babies, in case there were additional health problems we couldn’t foresee with ultrasound. The doctors at the high risk practice would continue our prenatal care and deliver our baby at the other facility.

Kaia was born via c-section one early Friday morning. The doctors, in the first of many predictions, had been wrong about how far her cleft extended. It barely extended into the hard palate, just affecting the alveolar ridge. Later that day Paul rolled me down the hall to the nicu for our first attempt at breastfeeding. Thankfully this facility with a level one nicu had lactation consultants on duty 7 days a week. Kristin was the first lactation consultant. She showed us how to tickle Kaia’s lips with the nipple to get her to open; how I could sit and hold her in a football hold – the most comfortable position after having a c-section. Because of Kaia’s cleft, she showed us how to use a nipple shield, which allowed Kaia to have the nipple extended further into her mouth. Kaia, the little trooper, latched on right away. She proved them all wrong. Those consultants were there with us for every feeding for several days. We had to prove to the doctors that she could get enough milk so before and after every feeding we weighed Kaia to see how much milk she drank. She had jaundice which made her very sleepy so we had to work very hard to keep her awake during feedings. We tickled her feet, combed her hair, anything to keep her awake. Because she was in the nicu, we used curtain screens around her little bassinet area in the nicu for privacy during feedings. There I was in a wheelchair, completely ensconced by supportive pillows, surrounded by Paul, the lactation consultant, and one or more RN’s. Often the doctors would peek his head over the screens to talk with us or the nurses. I didn’t care. My little girl was breastfeeding.

After a few days we introduced a haberman feeder; a special bottle designed for babies with clefts. Paul could feed her and the nurses could do night feedings in the nicu with it. Upon advice from the lactation consultants, I continued to pump following every feeding and every 2-3 hours when I was away from her. That advice was crucial to me developing an abundant milk supply. Kaia came home after a week in the nicu and I continued to pump after every feeding. Until she had the cleft lip surgery at 4 months of age, I continued to pump. After almost every feeding I would offer her the haberman bottle with expressed breastmilk to make sure she was getting enough milk. We could squeeze it to get her drinking again when she tired.

I liked the haberman at first. I wasn’t an experienced breastfeeder. That, combined with the use of the nipple shield and my abundant milk supply pretty much guaranteed that breastfeeding was a messy spectator sport. It just wasn’t something I was comfortable doing in public. So we used the haberman in public and Paul could help with feedings at night on the weekend and in the evenings.

I became an experienced pumper. That hospital pump was my constant companion. I pumped on airplanes, in airport gate areas, in bathrooms. But most of all, I just pumped. Often. I found a great product called a nursing cape. It was great for nursing and also for pumping. With it, I could pump in all the settings I mentioned and still retain my modesty.

I heard so many new moms complain about a low milk supply problem. I had the opposite situation: an overabundant milk supply. Now, if you have to have a milk supply problem, I was glad that mine was an overabundance. However, it was still complicating. I leaked. I leaked through countless nursing pads. I should’ve bought stock in a company that makes nursing pads, I went through so many of them. Even when Kaia would start sleeping longer at night, my breasts would wake me up at night, heavy, leaking and demanding a release. I also had to pump “off the top”, or pump off the foremilk, before breastfeeding Kaia. I had so much milk that the initial letdown was so powerful and there was so much of it that it would overwhelm Kaia. I would usually pump 2 oz off each side before feeding her. Since I routinely pumped 6-8 oz off each side she still had plenty of milk and she would receive more of the higher fat hindmilk.

There was one advantage to an abundant milk supply. The weight that I had gained while pregnant - the recommended 30 pounds - literally melted off during the first months after Kaia was born. I didn’t do a special diet or exercise program. It just came off. I figured out that I was expending 800 calories or more each day producing breastmilk.

When Kaia was a couple weeks old I went to a La Leche meeting. I thought that I was looking for support and encouragement. Really, I think I just wanted everyone to treat my breastfeeding experience the same. Everyone there focused on how Kaia was different: her cleft. I was already getting used to that and would continue to do so. However, I didn’t feel like it was a great help to go. I also had this underlying feeling of inadequacy as a breastfeeding mom because we were using the nipple shield. That artificial device felt, well, it felt so artificial. So unnatural. I didn’t feel like we were truly breastfeeding. I grew to hate the nipple shield. I had to wash it after each feeding and have it handy for the next feeding. I’d be upstairs ready to nurse Kaia, breast out, and realize the nipple shield was downstairs, freshly washed next to the sink. I lost one and we joked that we’ll find it when she’s 3. She 19 months old now and we still haven’t found it.

I didn’t return to La Leche until Kaia was 7 months old. When I did, I met the most inspiring woman there. Her name was Melissa and she too had a child with special needs. Her daughter had low muscle tone like Kaia, but required a g-tube. Melissa had kept pumping for months to supply her daughter with the best nutrition available – her breastmilk. I was so encouraged to see her there. I thought, if she is comfortable and is able to find encouragement here then so can I.

Eventually, after so many feedings with the haberman, Kaia started to get nipple confused. The week right before her surgery at four months of age she went on a nursing strike and refused to breastfeed. I was so worried that she wouldn’t remember how to breastfeed after the surgery. Of course, I continued to pump to maintain my milk supply and to provide expressed milk for her in the haberman bottle.

The plastic surgeon’s office gave us a syringe/tube contraption to use to feed Kaia after the surgery. We tried it a few times in the weeks before her surgery. It didn’t go so well. Babies have a suck/swallow reflex and there was nothing for her to suck on. We just squirted the milk in her mouth with the syringe tube and she didn’t know what to do with it. I anticipated there would be difficulty after the surgery but the nurse and doctor reassured us, saying we’d be surprised how quickly babies catch on to using it when there is no other food source.

Kaia had her surgery on a Monday morning. It was a very difficult day. She emerged looking swollen and was extremely lethargic. We brought her home the next day even though she hadn’t been drinking with the syringe well. She was so lethargic still. More on this to come in a later post; I want to stay on topic here. By Thursday she still was not drinking from the syringe. I was worried about her hydration and her ability to heal if she wasn’t getting nutrition. Her plastic surgeon finally relented and told me to breastfeed her – but to do so without the nipple shield. She couldn’t have anything that hard near her sutures. A breast by itself is soft enough so that it wouldn’t damage those delicate tissues. I was so nervous. She wouldn’t breastfeed the week before surgery with the nipple shield and had never breastfed without it. Would she recognize that this is where the milk comes from and latch on and drink? Gingerly I held her on our living room couch with Paul sitting across from me. He looked on encouragingly while I held her and showed her the nipple. I slowly and carefully brought her to the breast. Miraculously, she latched on and was so thirsty she didn’t stop nursing for 20 minutes. She came away looking extremely tired and content. When I lifted her she belched loudly. I was crying tears of joy. I was so thankful that I had made the commitment in the months prior to persevere; for all the pumping.

I was still concerned that Kaia wasn’t able to suck efficiently enough to get a sufficient quantity milk so I rented a hospital baby weigh scale, like the kind we had used before and after feedings in the nicu. For a month I weighed her before and after every feeding. There are few resources and research on how much breastmilk babies drink. I found one at: http://books.nap.edu/openbook.php?record_id=1577&page=82 It said babies her age drink 19-30 oz breastmilk per day. Surprisingly, breastfed babies do not increase by much the volume of breastmilk that they drink as they age. Rather, the composition of breastmilk changes as the baby ages. Kaia usually drank between 15-25 oz per day and continued to gain weight consistently on her growth curve. The first month after her surgery, Kaia breastfed exclusively. Breastfed au naturelle, no nipple shield! Hallelujah! The word bottle became a dirty word around our house. I was so thankful that Kaia was breastfeeding I was determined that she would not become nipple confused again. I was completely committed to breastfeeding at every feeding.

Since she was only 5 months old and I really wanted to maintain my milk supply, I continued to pump, usually 3-4 times a day after feedings. I wasn’t sure that Kaia had an effective enough suck to maintain my milk supply. I believed she was able to get the quantity of milk she was getting because I had such an abundant supply and powerful letdown response due to all the pumping. Everyone else told me otherwise. Why are you still pumping? La Leche, lactation consultants, her occupational therapist, even my husband all asked. If she is getting that much milk she should be able to maintain your milk supply. She will take what she needs. I started to doubt my instincts. When she was 7 months old I returned my rented hospital grade pump and pumped sporadically after feedings a couple times a day with a used store-bought pump. My milk supply dramatically decreased. My period resumed. I knew that if I wanted to continue breastfeeding Kaia I needed to keep pumping after feedings to adequately stimulate a good enough milk supply for it to be easy for her to get the milk. So I rented a hospital grade pump again and returned to a prior pumping schedule, 3 or 4 times a day after feedings.

With all that pumping, I accumulated quite a supply of breastmilk. We had actually purchased a deep freeze early on because our freezer just wasn’t big enough to contain all of it. I (half) joked with Paul that all that breastmilk was my life insurance policy. If something had ever happened to me, I knew that Kaia would continue to be able to get the best nutrition for quite some time. Eventually I realized that she would never need all that stored milk. I read about Indiana Mother’s Milk Bank and started the process to become a milk donor. It isn’t the easiest process and there is no benefit such as financial remuneration, but I wanted all that milk to be of use. Milk Banks screen donors, pasteurize donated breastmilk, and give it to NICU’s for preemies and to babies whose health is best served by drinking breastmilk. I think they were genuinely shocked (and very thankful) when I showed up with several large coolers full of breastmilk.

At just over six months, Kaia had started solids as well. I kept getting pressure to increase her solids and have her drink from a sippy or open cup. Until Kaia was 11 months old, we offered breastmilk in an open cup. We noticed her having a wet rattly breathing sound after she drank from an open cup. Upon the suggestion of her Occupational therapist, Kaia had a swallow study done. They couldn’t evaluate breastfeeding in a swallow study, but they found she was aspirating all consistencies; thin liquids, thickened liquids, purees, and solids. Again, more of this subject to come in another post in the interest of staying on topic. The speech therapist that did the study told us she should be admitted right away to insert a g-tube. Kaia’s pediatrician disagreed. Two other doctors that we saw over the next week agreed with him. She was gaining weight on her growth curve and had never had pneumonia. Both would be likely to have happened if she truly was aspirating. The pediatric GI doc encouraged me to continue breastfeeding her as long as I was willing. You’re doing something right, he said.

Something right, indeed. No ear infections, no major illnesses, no pneumonia. All common for kids with clefts and especially kids that are aspirating the way Kaia was supposedly aspirating. It makes me wonder how many kids have feeding tubes inserted that don’t really need them. I am not in any way questioning the parents of these children. I just knew that the right decision for our daughter wasn’t a feeding tube. We couldn’t believe that she needed one. We felt if it were true that she was aspirating she would’ve been sick. Not only had she been healthy, she was gaining weight. It didn’t make sense. We weren’t going to put a feeding tube in our daughter and invite all the negatives that go with that (oral aversions, risk of infection) when there was no sound reason to do so.

So I continued to breastfeed her. And I continue to do so. The challenges have changed but persist. Kaia has gone on several mini nursing strikes, usually when her routine is off. Travel days of vacations are usually tough, although many times she has nursed well on planes and fallen asleep doing so. Since about 7 months on, Kaia prefers to breastfeed in a darkened, quiet or noise machine-d environment. I usually feed her in the same rocking chair in her bedroom, whereas at first she would breastfeed anywhere. She went through a period of biting at around 9 months. I used the technique of saying “no bite” in a very firm voice and setting her on the floor for a short time. The biting ceased very quickly. Now she will play and lick at the nipple at the end of a feeding. She has almost all her teeth now; a baby beginning to bite does not equate an inevitable stop to nursing.

Over time, Kaia and I developed a rhythm of breastfeeding. I found holds, or breastfeeding positions, that were the most comfortable for both of us. Instinctually, I developed techniques to assist her feeding that I had never seen other breastfeeding moms do, at least in public. I would lean slightly forward over Kaia, so that gravity could assist with letdowns. I also used the method of compression during feeding to keep the milk flowing, and used hand expression, especially at the end of feedings, to completely drain the breasts without having Kaia needing to work so hard and tire with feeding.

We are slowly weaning. Kaia is nursing on average 3 times a day now. I still get pressure to wean more and quickly. She isn’t eating more solids because of the breastfeeding, people have said. She isn’t drinking more from a cup because of the breastfeeding, people have said. A select few people are vocally supportive of our continued breastfeeding. We finally found a cup that worked for Kaia (her wonderful OT recommended it). Kaia drinks well from it on the rare occasions when I am away from her and she misses a breastfeeding. She doesn’t the rest of the time, because she is getting enough milk from me. I don’t worry about it anymore. I know she can drink from a cup and the time for sole cup drinking will come soon enough.

I feel so fortunate to have been able to fulfill my dream of breastfeeding my little girl. I didn’t have many breastfeeding role models, and even the ones that I did have didn’t understand how breastfeeding a baby with special needs was different. I truly feel like if we could do it, almost any new mom can. I especially want new moms of children with special needs to know that it is not an absolute that their baby will not be able to breastfeed. It does take more commitment. It’s a commitment that has been so worth it for us. I share our experience here to give hope and a realistic view into how breastfeeding a child with special needs is possible.

Vacations on the cheap

Living in Indiana is made bearable by the number of vacations that we take. We probably traveled a little less last year than we did before having Kaia, and we still traveled quite a bit. Last year we all flew to Kauai in January, Paul to Minnesota and myself and Kaia to New Hampshire in February, to the Bahamas in May, to Minnesota, North Dakota, and Marco Island, Fl in June, to South Carolina and myself to Boston in July, to Big Sky, Mt in August, to North Dakota a few times in August and September, to Mazatlan, Mexico for Thanksgiving in November, and myself to New Hampshire in December.

But, I think people would be surprised to find out how little we actually spend on vacations. First of all, all that air travel cost us less than $600 total. It cost so little because of my husband’s awesome job. He works for an airline and thus gets free or incredibly reduced travel benefits. There is a catch, though. We fly standby and have learned to be very savvy about how we fly. There are the “non-rev rules” for increased likelihood of boarding an aircraft. You must attempt the first flight of the day. Check loads. Check again. Then check again. Always have a backup plan. Don’t dismiss travel on or over holidays.

Before last year, we traveled quite frequently but usually stayed in, um, how shall I say, a more modest type establishment. Well, let’s be honest, we stayed in dumps. They were cheap. We never really cared b/c we got to go to amazing places and see incredible sights. We stayed in a convent in Rome and a dormitory turned hotel in the summer in Montreal when we had Lasik surgery there. There is so much character in places like that.

During our travels we sometimes had the opportunity to stay in timeshares which generous friends gave us as gifts or for cost (the reservation booking feeand guest certificate fee) b/c otherwise they would lose it and they didn’t have funds or vacation time to use it. We attended the timeshare sales pitches but never even considered buying. It seemed like such a rip-off. Then we attended one in Hawaii. The salesman there explained a little secret in the timeshare business that would suit us perfectly. But there was no way we were going to buy there, from him. It was way too expensive.

There are certain fees associated with timeshare purchases. One is the upfront purchase price. Then there are closing costs, annual maintenance fees which vary wildly depending on where you buy property, and annual points membership fees. Once you have an account, you pay a reservation fee each time you make a booking. The key to finding a good deal is to find a timeshare with the lowest constant costs: low annual maintenance fees and the highest corresponding value of points. The maintenance fees are the cost that varies considerably between locations. So do the point values.

However, we didn’t need a lot of points b/c of the tip that the salesman in Hawaii told us about. With RCI, within a 45 day window, “weeks” resorts will let remaining vacant units go for 9000 points or less. Some of those same units “cost” 60,000 points or more if you book more than 45 days in advance. During the 45 day window, many go for less than 9000 points. The least that we’ve seen is 6000 points. But we never plan our trips more than 45 days in advance. We don’t know what flights will look like that far in advance. So it suits us perfectly.

We bought our timeshare on ebay. We bought a place in Florida that very likely we will never visit. However, it had low annual maintenance fees and enough points for us to take at least 2 week long vacations with points each year. Being timeshare owners, we also found that we have access to their last-minute deals, called last call, which allow you to book units within the next two months without using any points at all. The costs for these units are very reasonable: $250 for a week in a 2 bedroom unit, $225 for a 1 bedroom and $200 for a studio. Usually resorts let places go for “last call” when it is off season or when they are new resort, or they are just not filling to capacity for whatever reason. We added my in-laws, who are retired, as owners on our points account so that they could access this benefit without using a guest certificate (which costs extra). They just got a place in Florida, last call, for this week. It was great. We went down for the weekend to stay with them. I just cannot believe what a great deal it is.

Now, I know what you’re thinking. It all sounds great, but what are the actual numbers? Show me the money, right? So, let’s compare apples to apples. The salesman in Hawaii wanted to sell us a place in Hawaii for $14,000. The associated point value was 60,000 per year. The annual maintenance fee was $850. Then there were closing costs of $2000 and the annual points membership fee of $125. Audible gulp, at least for us.

We bought, on ebay, a place in Florida for $350. The closing costs were $450. The annual maintenance fees are $285. Our annual points membership fees are the same, $125 per year (there are no deals on those unless you prepay for several years, which we actually did for $100 per year). The points value is 35,000, every other year, or 17,500 points each year. It gives us a little less than 2 weeks vacations each year at 9000 points each. We can choose to look for places that are less than 9000 points per week or we can “rent” points from RCI for the low price of 2 cents per point. So, if we needed to rent 500 points, it would cost $10. I think there may have been a minimum/maximum number of points that you can rent, but we haven’t had to do that yet. We’ve always found places for less than 9000 points if that’s what we needed to do. We also focus on the last call specials available if we don’t want to use points. We could also “borrow” points from ourselves, from future points years, if we didn’t want to “rent” extra points. We haven’t had to either so far. And, the best part, we can access all the same resorts that buying into that expensive Hawaii timeshare would've allowed us.

Our constant annual outlay, not including the initial costs of purchase, is only the maintenance fee and points membership fee. If we use points, we also pay a booking/reservation fee of $164 for the week. Our timeshare vacations this last year included a 1 bedroom unit in Kauai, a huge studio in the Bahamas, a 2 bedroom huge place on a lake in Big Sky, MT, and a gigantic 2 bedroom place on the water in Mazatlan, Mexico. Only Kauai and Big Sky required using points, the Bahamas and Mazatlan were “last call” specials. Our total annual cost for all these places was:

Points membership fee: $100
Reservation fees: $164, $200, $164, $225 (these vary based on resort but the most we’ve paid is $250 for a last call)
Points used: 18000 (only Kauai and Big Sky required using points)
Annual maintenance fee: $285

So our annual cost was approximately $1138.
The upfront purchase cost that we spent of $800 I think is fair to divide over, let’s say 10 years, so we can assume an annual cost of $80 for that.

To be fair, many of the resorts charge “hidden” fees, like a state/visitor tax (you’d pay this in a hotel, too), a cleaning fee, electricity or a/c fee, etc. However, they are all clearly indicated before you book the resort so you know what you will have to pay. Last year Kauai and the Bahamas had visitor taxes in the amount total of around $100. In the interest of full disclosure, sometimes resorts will charge extra for wifi access or extras like cribs or highchairs.

So our total annual cost, including divided upfront purchase and hidden fees, last year was $1318. For 4 weeks of vacations in what I consider luxurious condos, that comes out to $329 per week, or $47 per night. Not too shabby, huh? We couldn’t even get a dump in Lihue, Kauai for that price.

Vacationing with a child really makes this a bargain. Considering the alternative of sharing a hotel room or booking multiple rooms, the convenience of having a kitchen and many times multiple bathrooms (many of the 2 bedroom units have 2 bathrooms as well), staying in a condo is much more comfortable.

I’m not saying everyone should run out and buy a timeshare. I just wanted to share how we’ve found a way to go on vacation for a price that fits into our budget. I think we enjoy vacations even more knowing that we are doing them in a financially responsible way.

Come out, come out wherever you are

Sometimes when I go to moms groups in the community or to storytime I feel very alone in having a child that is different. I know that there other children with special needs out there. I just don’t see them. They don’t attend the groups or go to the library storytime. I know it’s hard to get out with a baby, period. Then, when you have a baby that is different, it makes it even more difficult. There may be special equipment to tote like wheelchairs or walkers. Not uncommonly there is the issue of being overscheduled. Lord knows, a therapy schedule can really restrict opportunities for outings. Then there are the comments - the unthinking, insensitive comments that people make out of a place of ignorance. Those comments can make you feel like never leaving the house in order to protect yourself and your child from that surprising sting of hurt.

More than a handful of times I have left groups of typical kids in tears. Not because of the children. It’s most often because the other moms focus on how Kaia is different. I know my daughter is different. But there is so much more to her. She is a typical child to me. She has a whole host of features that are beautiful and stand out on their own merit. I will never forget the people, who upon first seeing/meeting my daughter, didn’t focus on how she was different physically (her cleft) - people whose first question wasn’t “when will she have surgery?”

So, on the rare occasion when I have seen mothers out with their children who are different, who have a physical disability or other quality that sets them out of the typical range of development, my heart sings. I feel a kinship with these mothers. I know how hard it can be. But no matter how hard it is, I feel strongly that it is important that Kaia get out in the world. It is so meaningful for my daughter to see typical kids playing and for her to have the opportunity to interact with them and learn from them. She studies them with a scholar’s concentration at playgroups. I also know how important it is for them (and their mothers) to see her – to realize that there are people whose abilities and appearances are different and that they belong in this world too. So I’ve persevered in making the effort to get out in the world with my daughter. She deserves it and so do I.

And, please, when I joyously share at storytime that my daughter, at 16 months, is learning to stand independently, or at 18 months, that she is learning to walk and it is an extremely exciting time around our house, or at 15 months, that she made her first sign, feel free to celebrate with me. I am not bemoaning her development and achievements, I am rejoicing in them.

And to all the mothers of children with special needs, please come out, come out wherever you are. I need you, my daughter needs you, and all the typical children and their mothers need you. Heck, the world needs you.

A magical carousel ride and a special thank you

My sweet friend Karen was nice enough to invite us to the Childrens' Museum this weekend. This picture of Kaia and myself on the carousel ride was taken with her camera. Doesn't Kaia look like such a big girl? She is growing so fast these days. I was gone for 2 hours this evening and when I came home, I could've sworn she had grown in the time I was out.

Thank you Karen for inviting us and for documenting the morning with photos. I am really so thankful to have such a good friend. Karen has a typically-developing child that is the same age as Kaia within a week. We met when they were just 5 weeks old. Her husband and my husband have the same birthday within a week and so do she and I. How odd, right? Karen is always on the lookout for resources for Kaia for us. She forwarded me information about a group of moms with kids with special needs that has been an incredible source of support. She was never intimidated by Kaia being different. We've commiserated the challenges of new motherhood as our children go through the same phases. It's been nice to know a mom of a typical kid the same age as Kaia and to realize that so many of our daily challenges are the same, whether our child has special needs or not. So thank you, Karen, just for being you.

The stars were aligned

Last night was an exciting night. We went out for dinner and decided to brave fate by eating at what I dub a "sit-down" restaurant. Some of you may recognize that term. I don't exactly know where it came from but what it means is a restaurant that has a waiter who comes to take your order and brings you your food. It's not a buffet (our restaurant choice of late b/c it doesn't matter if the food gets cold when baby fusses, you can always get more) nor a fast food restaurant. Anyway, we rarely eat at them these days, as I describe in another post. Last night Kaia was very fussy before we left the house. I was concerned that it was going to be a bad dinner experience. However, once we got to the restaurant she was fine.

A couple things helped. First, we went to Applebees. We had never been there with Kaia in tow. They have great highchairs. None of those generic wooden high chairs. These actually were a little more supportive and allowed her to sit closer to the table. I also brought more goodies in her goody bag. She had her crayons (the hostess also gave her some), several books, a dolly, etc. And her favorite: a shaky ring rattle that fits perfectly into a generic onion soup mix box. She loves to take it out, shake it, and put in back in. Over and over.

I broke out her rubbermaid straw cup with her thickened milk and she did the usual - completely rebuffed it and continued playing. She played nicely throughout our whole meal and charmed the manager and server as I described in the post below.

Then we got our dessert. One of those dessert shooters things. The hot fudge sundae kind.

Kaia has been entranced with our adult metal spoons for a while now. She has been working on scooping with them in therapy and with us outside of therapy. She's got the scooping thing down cold. She just won't bring the food to her own mouth. She will feed us, the dolly, or fling it to the floor, but she won't feed herself. Last night, at the restaurant, she still wouldn't feed herself with the spoon. Frankly, I wouldn't even let her try there b/c it would be a huge giant fling fest mess.

But, the look on her face when she finally let me give her a taste of the ice cream. It was like this surprised, "wow, what in the world is this tasty concoction - I never knew food could taste like this" look. So we bribed with the ice cream in order to sneak in bites of all her other food, and she ate like a champ.

This wasn't the first time that we've given her ice cream, but really the first time that we've gotten that reaction from her. After I had just told her nutritionist, OT, and speech therapist that against all standard therapy advice, she didn't like cold stuff. Truth is, for the past few weeks, she hasn't. Of course, just when we think we've got Kaia figured out, she changes the rules of the game.

I'm not sure that this is the best way to feed her (bribing with bites of ice cream), but at least she ate. At a restaurant. I consider that progress.

Body Parts

An update on Kaia's body parts identification. Since my first post on Jan 3rd, Kaia has progressed from being able to identify her belly button when asked, to now also being able to identify her hair, nose, ear, and is learning her mouth and toes. It's so cute - she will shake her head when we ask her, "Where's your hair?" Then, we ask her to touch her hair she will do that. Sometimes she gets confused and will point to a different body part but most of the time she gets them right. The manager at the restaurant last night stopped by our table to chat and told Kaia how pretty her hair looked and she immediately put both hands to her hair. Then she waved Bye Bye to him when he walked away. I think he was very charmed. Who wouldn't be?

Winter Wonderland

Speaking of snow....we decided to get right out in it tonight. It was a beautifully snowy day here in Indiana today. Everytime I looked out the window I felt like we were in one of those snow globes with the snow swirling romatically. So this evening we put all of Kaia's new snow gear on her: her new boots, snowpants, parka, hat and mittens. She didn't like the getting ready part so much. That fancy sled you see in the pictures was handmade by Grandpa Dennis for Christmas. She wasn't too fond of it in the house but once we got her moving in it outside, she loved it! A great five minutes of family fun - then we decided to get Kaia in before she got frostbite! Getting a toddler ready to go out in the cold is like waiting 45 minutes at six flags to go on a 2 minute roller coaster ride. It's a long wait but the ride is worth it.

Activity & toy ideas for snowy days

Kaia's developmental therapist gave us such a great list of toys and activities that I thought I'd share it here. We haven't even done all of them yet. He also shared a play dough recipe that is supposed to be better (last and stay flexible longer) than store-bought play dough.

1) microphone (singing, imitating words)
2) personal photo books (self concept)
3) echo or voice distortion microphone (imitation/language)
4) Discovery Toys ball tower + various balls (cause/effect, big/little)
5) Velcro fruit (pretend, matching)
6) ‘color of the week’ box (not sure what this is - we haven't done it yet)
7) cookie/cracker matching game (match object to picture)
8) catalogs & sale fliers (rooms in house, language)
9) stickers on faces in a mirror (self-concept)
10) ‘ball pit’ in a clothes basket (find hidden toys, sensory)
11) Lucky Ducks game (color match)
12) Leap Frog basketball (letters, etc)
13) Finding objects in rice (sensory)
14) Magnet fun (United Art & Ed, or fridge magnets & cookie sheets)
15) Stringing bears (fine motor, colors-Dollar Tree)
16) Pull toys that make noise (cause/effect, sensory)
17) Give objects to boy/girl on felt board (gender identification-Dora, etc. felt boards at Meijer)
18) Nesting blocks (size & spatial concepts)
19) Toy in child’s hand during clean up song
20) Finger plays (Tiny Tim Turtle, etc- imitation/language)
21) “hello” song & ‘homemade songs’ (social interaction, language)
22) Play dough (language, pretend, sensory)
23) Tape player & songs (language, sensory)
24) Toy people & who is it? Game with a toy door (turn-taking,language,make-believe play)
25) Sorting game-2 kinds of toys or snacks in separate containers)


Homemade Play Dough

Add to large (pasta) pot:
2 cups flour
2 cups water
1 cup salt
¼ cup vegetable oil
3 teaspoons cream of tartar
food coloring of choice
scented extract (vanilla, almond, etc-optional)

Stir constantly over medium-high heat until mixture is one large ball

Remove from heat and knead on cutting board until smooth

Store in air-tight container(s)-ziploc bags or Tupperware & keep in a cool place (fridge, etc). Lasts at least 1-2 months

Eating Out

B.C., or Before Child, Paul and I enjoyed going out to eat. We enjoyed it so much that we ate out often, more often than we ate at home. A.C., or After Child, we still enjoy eating out but it rarely happens. Early on we tried to go out to eat but I found it just wasn’t that relaxing of an experience. Kaia would get fussy or needy and one of us would have to soothe her or I’d have to nurse her. Meanwhile, expensive restaurant fare sat on the table getting cold. It bothered me to spend the money on restaurant food and then not be able to enjoy it. So, we saved going out to eat for when the in-laws could make it into town to babysit (about once a month), or monthly Parents Night Out, and enjoyed those precious dinners out even more. When Kaia was about 15 months old I decided that it was something I missed too much and that we were going to make a commitment to try to eat out once a week as a family. Occassionally we’ve had those magical dinners out where all the forces of the universe collide to make a perfect family dining experience: Kaia eats well, behaves well, and entertains herself in the restaurant-provided highchair while we eat our overpriced restaurant fare in marital bliss. However, there are times when she gets fussy and needy. We’ve actually walked out after ordering(of course we informed the waiter) b/c she was so worked up I knew there was no way we were going to be able to eat and it was disturbing all the other customers. That time was probably partly our fault b/c she was getting close to naptime.

However, the last few times we’ve been out to eat as a family we’ve encountered a new challenge. Kaia refuses to eat or drink anything. I know that she’s hungry. She will chow down when we get home and put her in her highchair. But at the restaurant, she won’t drink, won’t eat her own foods that we’ve brought, won’t touch any restaurant food. Nothing, nada, zilch. She behaves just fine; she just won’t eat.

I am afraid we’ve created a highchair monster. She has a space saver highchair at home, the kind that straps on to a regular dining room chair and has a tray. I’m glad that she eats in her highchair. I just want her to be a little flexible. In the restaurant highchairs, the table hits her right above chest height. It’s a little high for her to drink from her straw cup and keep her chin tucked for easier swallowing. They also have a lot less support. We usually snug her or our coats around her to keep her supported around the trunk. The other factor when eating out is a distracting/different environment. I don’t know what to do about that. That’s the whole point of eating out – to be in a different environment.

One of her therapists suggested we use her portable travel highchair, which also has a tray, at home for a while. Then, when we go out to eat again, she suggested we bring it to the restaurant for Kaia. Great suggestion but the actual implementation, frankly, is going to suck. That’s a lot to lug into a restaurant. But, if it is the only way, we’ll do it.

Does anyone else have any other suggestions? Did/do your kids do this? Was it just a passing phase?

Caregiver Support Respite

Is your child on the waiting list for a medicaid waiver? If so, and you live in Indiana, then you may be eligible for caregiver support respite. (I say may be eligible because I am not absolutely sure to which waivers this applies. My daughter is on the waiting list for the DD and the support services waivers and these apply. I'm not sure about the autism waiver or others.) Caregiver support respite entails calling your local BDDS (Bureau of Developmental Disabilities) office and requesting a provider pick list. Once you receive the list, you can call and interview providers to make a selection. Many families have their chosen caregiver such as a relative (grandma or aunt, for example) become an employee of said provider, then the caregiver can get paid to take care of the child and it removes the financial burden from the parents. The amount of respite, I've been told by BDDS, is about $2000/yr; which works out to about 10 hours of respite per month. You can have it scheduled each week or use it for a vacation or emergency use. I've heard that with the long waiting list (last I heard in IN it is 5 to 7 years for the DD waiver), the state is "throwing a bone" to the families by providing caregiver support respite.



Our experience: We've had the provider pick list for over a month now. I've made a few calls to providers but I have to admit that I am struggling with this. Only Grandma and Grandpa (and of course her Daddy) have taken care of Kaia when I'm not around. We have left her for a couple hours at a time in the monthly Parents Night Out program a local agency/church offers also, and that has been difficult for me at times. I actually used to work at a provider in my former workplace life (I'm still technically an employee but haven't worked in a year now) and I checked out their website for respite care. I always said when I worked there if I had a child that needed services I would never use them. The situations we find ourselves in. I've worked for several companies though and said the same thing about all of them. I just saw too many employees come and go that didn't care at all about the clients and blatantly disregarded company rules and parental wishes. So I am really hesitant to utilize this with the lack of control over who actually comes into our home. I think the only way to have control over the individual that comes into the home is to do what I mentioned above (have a relative or other trusted person become an employee of your chosen provider). The only other way is for the person to get licensed (not sure if that's the proper term) through the state as a provider and I'm not sure how to do that. So, anyway, all that said, we are still considering this. I probably sound overprotective, it's because I know that I am! I did read some hints/tips for parents having respite care in the home (I can't remember the website right now or I'd link it here). One tip was to create a binder/folder with all your child's info in it for a respite worker unfamiliar with your child (code for an absolute stranger walking into your house). The other was to put keyed locks on rooms (like your bedroom) that the respite worker shouldn't need to access.


If you can't tell I am pretty nervous about doing this. But I know that hubby and especially me need a break sometimes so I am definitely trying to work through this. Do you use respite? Why or why not? Was it difficult for you and how did you work through it?

Medicaid Waiver - Vote again to fully fund

Fully Fund Medicaid Waivers for the Developmentally Disabled
***ALERT: Make sure your VOTE counts. Click on the number to the left with "Vote" under it – it will change to “Voted”. National Priority for the Economic Stimulus Package: Fully Fund MedicaidFunding health care and services for individuals with developmental disabilities, disabilities and the elderly creates jobs, careers, business opportunities while filling a critical need.I propose that the federal government:1. Fully fund the Medicaid Waiver Program as part of the next Economic Stimulus Package. 2. Consider this as an increased federal match so that states are not put into an impossible situation.3. Create portability of services across states and counties as is allowed with Medicare and Social Security.Facts:*Across America, an estimated 300,000 people cannot obtain essential support to live and work in the community because of lack of funding.*Institutional care costs $88-$225,000 per person per year depending on the level of care. Community-based care costs $20-$75,000 per year (varies by state and level of care).* Waivers are not portable. Families cannot move out of state or even out of their current county in some places for military duty, to accept jobs, or to live closer to family because they must go to the bottom of decades-long waiting lists at their new location.Benefits of this proposal:1). Job creation in the form of service providers. $12-$15B per year would create an estimated 244,000 jobs.2). Community living costs less than institutionalization.3). Parents and affected individuals can return to their careers, earn income, pay taxes and obtain health insurance.4). Some families will come off public assistance which reduces overall tax burden.5). Families will be able to move to accept new jobs or military assignments.6). Improved health of affected people and caregivers.7). Reduced financial burden on aging parents.

Therapy-Free Days

Therapy-free days are pretty few and far between around here these days. Kaia has a jam-packed schedule with speech therapy on Mondays, developmental and occupational back to back on Tuesdays, physical on Wednesday, and occupational again on Friday. On Monday we also try to get out to a toddler group and I try to keep Thursday open for storytime at the library. But the last month or so Kaia's PT has only seen her every other week due to vacation, so we've had every other Wednesday free for other activities. Today we went to a nearby church to check out their indoor play area. We had been to one other one recently that is further away, and they are such a great resource. Both are open all day every weekday and are free. That's right - you read that correctly, they're absolutely free. In the winter it's nice to have somewhere like that available when cabin fever sets in and weather prohibits going to an outdoor playground. We met a couple other moms and their kids there and it was nice to get out of the house and do something different. I wonder sometimes what it must be like to have a typically-developing kid and thus no therapies and to have all that "free" time. I can't imagine. I'm sure we would get out even more. I am so thankful to have all the therapies that Kaia receives, though. Her therapists overall are amazing and as a first time mom, it's nice to have all those sounding boards and sources for advice.

Welcome!

Welcome to Special Insights! This is an exciting post for me. I've been wanting to start a blog like this for awhile now but am just finally getting around to it. As it says in the about me section, I have a beautiful daughter, Kaia, 18 months old now, with special needs. She has a rare chromosomal syndrome called 22q13 deletion, aka Phelan-McDermid syndrome, that causes global developmental delay. Kaia was also born with a cleft lip and palate, and a multicystic kidney. At 11 months age, she was also diagnosed with dysphagia (swallowing difficulties). On this blog I hope to document her amazing progress, to a couple ends. One is selfish, to keep a journal of sorts of her early years; another is to communicate in an efficient manner all that is new in her world to those family and friends who are interested; and the last is to provide support and encouragement to, and to connect with, other families with kids with special needs. The first several months of the blog I intend to flashback a bit in order to record some of her earlier life. I will try to be as honest as I can about the joys and challenges of parenting a child with special needs.

We have something incredibly exciting to report today: Kaia is independently choosing to walk to her chosen destinations instead of crawling. This is more than the steps she has taken over the past couple months. Several times today she would go from one supported standing position to another via independent steps; usually by 2 or 3 steps. We weren't prompting or enticing her to do so at all; she just chose to do this. Later in the day we held a bowl with a block in it in front of her and she would go from a standing still position, take a few steps, stop and balance, then take a few more steps. It was great fun to have her walk around the kitchen this way. Very, very exciting. Of course after all that excitement I felt a renewed commitment to have her work on her trunk strength (her PT says this is key to her being able to walk well independently) so we put her on the ball and blew bubbles at her. She again approximated saying bubbles. (She had done that for the first time earlier this week). SO much new stuff today!

She is also walking much better with one hand held. She gets very impatient and intolerant of sitting in the cart while shopping. Today we were at Target, though, and instead of having her push the shopping cart, which she loves to do, I had her walk beside me holding one hand. The carts there are not so easy for her to hold into in order to push. I think she was frustrated that she couldn't push the cart and that I just wouldn't carry her (that's what I most often end up doing - and man, is she getting heavy), but she walked that way up and down a couple of the short toy aisles with one hand held. A few months ago she would just fall to the side almost immediately when we tried to have her walk with one hand held instead of both hands held. I can really see the progress when I think about that.

Kaia is also getting closer to being able to stand from on the floor. She will now do "down dog" yoga pose upon a verbal prompt and even just when she feels like it, and just needs physical help shifting her weight back onto her heels to stand. She seems so proud when she does it.

Also new this week: Kaia can consistently find her own belly button with a verbal prompt (she has been fascinated with ours for a couple weeks now); and she is babbling again after several months lapsed. She is also squatting much more from a supported standing position (holding on to the table with one hand) while she squats to retrieve an object on the floor and return it to the table with the other hand.