Goals Revisited: Part 2

If you missed the first part of this post check out Goals Revisited: Part 1

Valor (Old Goals)

  • Gaining weight Still working on this even with me giving him extra calories. Recently several of our adopted children have tested for a certain parasite so we are starting to test children who have problems gaining weight, like Valor. I have a feeling his test will come back positive and hopefully with some meds we can clear it up and get back on a better track
  • Working on a resting hand splint to get hand in neutral position He wears an arm brace daily. Also currently working on getting him a back brace to help with his scoliosis 
  • Weight bearing on arms Although he hates this we try to work on it a couple times a week 
  • Basic communication. Choosing between 2 objects and using switch to make choices Valor has started using a switch to request more, which is huge! 
  • Better positioning while laying on bed He is spending more time in his bean bag which puts him in a better position 
  • Getting out into community more He has gotten out more recently! Still something I need to work on but getting strollers into and out of autos is hard! 

Moving Forward: Valor is making some good progress in the communication area and I would love to see more progress in that area. I need to figure out what the best position is for his switch and explore getting an iPad with a Bluetooth switch to use for him. Also he still needs to gain weight! He’s so skinny despite my best attempts.

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Julie (old Goals)

  • Gaining weight! Figuring out emotional or physical reasons behind refusal of rice. Julie is finally gaining weight! She’s even got a bit of a belly and I love it
  • Self feeding 50% of the time She self feeds 100% of the time now! 
  • Learning more English words and alphabet She says about 20 English words and understands more. She’s got A, B, C, and D down in the alphabet. 
  • Counting to 10 She can count up to 4 when she feels like it 
  • Building strength back so she can hold her head up for more than a minute Julie blew this goal out of the water as she is crawling around everywhere! 
  • Figuring out where she stands academically and a plan for her schooling She is still so stubborn it can be hard to tell where she is academically but she is attending an afternoon enrichment class that seems to be good for her!

Moving Forward: Physically I would like to see Julie start gaining more strength so that she can move around better with either a walker or some other device. She is getting there and we have a great physical therapist working with her. I also need to enroll her in a extra curricular activity because now that Darren is gone her only play mate is Caden and I’ve noticed recently she has regressed to his level. Ideally she needs someone a step ahead of her to challenge her as she is just so stubborn!

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Julie helping me bake a cake! (WordPress insists on turning these photos sideways despite my best attempts)

Darren (Old Goals) 

  • Looking into schools for him
  • Working on standing more and building leg strength
  • Mastering alphabet and spelling his name

Darren was making some great progress with school and standing but his mom (one of my caregivers) choose to leave. It’s a complicated situation with many layers to it and my biggest fear is that he is in danger due to the choices of others. I’ve been praying for him and his mom every night and hope that we will hear from them at some point to know they are okay.

House Goals

  • Switching completely over to cloth diapers We are using cloth diapers all the time now! 
  • Better cleaning and organization We’ve been better at sanitizing toys and making sure that everything is more clean. As far as organization goes we try. It’s just not my strong suit. 
  • More outings with kids I think we did better this past 6 months! 
  • Taking more photos of the kids I got a new camera and I have been better at getting photos of the kids
  • Get all the kids 50% sponsored (or more) We have gained several child sponsor but many of my kids still need monthly sponsors. Please visit this post for more information about being a sponsor! 

Moving Forward: Now that my house has hit a stride of sorts my goal is to work on quality so every child is getting everything that they need.

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Personal Goals

  • No more weird infections:) I made it to this point with just some stomach problems and one cold so I think I can say I accomplished this. Also my foot is 100% healed and I do not appear to have any long term problems! 
  • Being better about having personal time and sticking to it I failed at this goal which is probably why i’m so exhausted now!
  • Better nutrition. More fresh fruit and veggies for me and the kids I have been better at getting fresh fruit and yogurt which has made a big difference for me! 
  • Blogging more I’ve been averaging about a blog a week which is pretty good for me! 

Moving Forward: I have to get better about guarding my personal time. I have a plan for how to do it and now I have to stick to it!

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The past 6 months have flown by! I leave to go back home for 5 weeks in a week from today. Although I’m very ready for some rest and good food I am not ready to leave the kids. Initially I made a year commitment to SCH but now that I’m at the end of my first year I can easily say that God is not done using me in India yet. Although its hard and some days I just want to quit at the end of the day I know this is exactly where God wants me for this season.

I will be back home for 5 weeks and as per usual will be collecting donations to bring back with me I have an amazon wishlist here and also need:

  • Books (I get so tired of reading the same ones over and over again to the kids)
  • EB wound care supplies (Mepilex, Tubiafast, Mepilex borders, etc)
  • Sturdy, easy to clean toys and puzzles
  • Craft supplies
  • I would love to bring a bigger special needs stroller (like these) back to take my older kids on outings more easily. If anyone has any connections for a used one please let me know!

And I would love to meet with you, get coffee, chat about life, and show you so many photos of my children in India. I’m so thankful for all the support everyone has shown me over the past year, friends, family, and people I’ve never met in person. Thanks for being the village for these kids!

Communication

One of the biggest things we focus on here on the rooftop is communication. All of my kids have some struggles with communication. They all struggle in different ways with different things. Communication is such a huge part of having a good quality of life so I work really hard on identifying how each kids currently communicates and what we can do to get them communicating to each of their maximum potentials. We face a lot of challenges with working on communication but we’ve also seen some progress in this important area. SCH is working on building a therapy program up that would include speech therapy in addition to physical and occupational therapy. I’m really looking forward to this as it will take some of the pressure off me to come up with therapy plans and implement them!

A major struggle with communication is that many of my kids don’t understand the basics of communication. Babies learn that when they cry their caregivers will react and give them a bottle, comfort them, give the something to play with, etc. Because of their neglect during early years they never learned this basic concept. I’ve been working with my caregivers to have them attempt to figure out why their child is crying or upset and address that need right away. This is especially important for my non-verbal children. I’m hoping that if we work on constantly meeting their needs that we can help with this basic building block and help with their communication

Another struggle is that my kids are spoken to in two different languages. I speak to them mainly in English (I’m in Telugu lessons right now but languages are not my thing!) and my Indian staff speak to them in Telugu. I’ve gone back and forth on whether or not it is a good idea to have them learning two languages but ultimately I’ve decided that it’s fine. Kids who know two languages tend to be smarter plus if they get adopted it will probably be to a English speaking country so knowing English would be beneficial to them. I think it confuses them a bit right now but in the long run it’s beneficial.

One of the biggest parts of teaching them to communicate is figuring out what motivates each child. For kids like Julie and Caden it’s easy to figure out motivators. For my less expressive children- like Thomas and Katherine, I struggle with trying to find things that they really like. With Penny the problem is that she loves everything so even if I take away one motivator she is content to just look at something else and is not interested in getting the object back. Working to identify each individual child’s motivators has been a tough but we’re making some progress in figuring out what exactly is motivating for each child!

For each child I’ve done a short snippet on where they are communication wise and what we are currently doing. If anyone has any advice or tips please feel free to share them with me!

Caden: Caden’s speech is a little bit delayed but I think it’s more related to the fact that he is learning 2 languages! His only actual word is mom in both English and Telugu. He does babble a fair amount though and is pretty close to saying ball. His receptive is much better than his expressive- he will clap his hands or do prayer hands when asked. I think with some time he will be fine language wise and right now we just work on reading books together and playing games.

Katherine: Most times when I tell people that Katherine is deaf-blind one of the first questions I get is how we communicate with her. I’ve been using an object schedule with her with varying levels of success. She seems to react negatively to the ball that symbolizes physical therapy but every other part of the schedule she seems neutral to. The only real motivator I can find for her is food so we attempt to incorporate that into our therapy times. Of course our whole communication system with her will change once she gets her cochlear implant and has it activated! Right now we’re just working on some pre-communication skills. I will swing with her and when I stop I make her sign more before I start again. I do this too sometimes with snacks. I’m trying to prepare her for the idea of communicating for when she starts using her cochlear implants!

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Katherine’s object schedule 

Thomas: Thomas is the kid I struggle the most with in this area. I have not really identified any motivators for him and his physical limitations keep him from using a switch. I’ve been working on some pre-communication stuff as well with him but I’m not really sure where to go from here.

Penny: Penny’s communication goals have switched over to primarily ASL once I found out she was profoundly deaf. At first I was trying to get her to sign “more” but now I’ve decided that might be too abstract and have decided to concentrate on “water” and “ball”. Signing has not clicked for her but I feel once she gets one sign and it clicks that more will follow. I’m also considering starting a modified PECs system pairing the sign with the picture. I still need to do more research and figure out what the best approach is for her. Right now I don’t think we are going to pursue a cochlear implant but I might reevaluate that decision once we get Katherine’s.

Valor: Valor has made some great progress recently that I’ve shared in previous blog posts! He is using a two-sided programmable switch. He has used it several times to request “more” when swinging or licking a lollipop. He’s not consistent with it so we are continuing to work every day on just using the switch. I’m also trying to figure out the best possible way to position the switch so Valor knows where it is and can consistently access it. Some days his arms are tight and some days he has more movement. Positioning it is hard especially because one of his motivators is swinging in the hammock! I’m hoping to continue to using his switch throughout the day and in different situations and once he uses it consistently seeing what the next step is.

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Working on the switch in the hammock

 

Julie: Our biggest language struggle with Julie is that she is so darn stubborn! She knows the answers but she will say something else. For example if I ask her what color something is she will say “book”. I’ve heard her answer correctly before so I know she knows the basic colors! Her Telugu is better than her English but she still purposefully answers wrong in Telugu too! We work on correctly answering questions and increasing her vocabulary. Her expressive and receptive skills are both delayed for her age so we continue to work on doing activities to build both of them up!

Darren: Darren’s language skills are probably the most appropriate for his age out of all my kids. He does have a bit of a stutter which is cute now but probably needs to be addressed in the future!

With so many varied communication issues in my home it can all be a bit overwhelming at times! I try to incorporate communication into the kids days and we’ve been able to really concentrate on it during preschool time. As we get speech therapists working with my kids I will be able to pass off more of it to the therapists and just reinforce it throughout the day. If anyone would like more information about our emerging rehab program please let me know! We are looking for clinics, foundations, or individuals who would be willing to help sponsor this new program that will be so beneficial to the children we take care of.

January Milestones!

January has been an exciting month for my home. We finally settled into a routine after the holidays and have been getting some good therapy time in for all the kids. All of the kids have made progress this past month that I want to share. Some of them have hit small milestones while some have hit bigger milestones but we celebrate them all around here!

Julie is a whole new child! If you had told me she would be crawling around and causing trouble back when I took her in July I would not have believed you. This past month Julie has began to be completely independent in feeding. She can correctly identify the color blue, count to three, and will say B if you say A. Julie will also tell you that her name is baby whether asked in English or Telugu. She is sitting up independently in a chair during preschool and will participate the entire time. Julie has also started asking and seeking out affection which is huge for her attachment. Pretty much this girl is rocking and blowing away expectations left and right!

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Caden has a great first half of the month. He starts opening and closing his hands as soon as he hears Twinkle, Twinkle, Little Star during preschool. Caden started stacking blocks, turning pages in books when asked, and is getting good at doing the shape sorter. He is imitating sounds and signs and generally being charming. He was getting really close to crawling when he got sick and ended up in the hospital. He’s out now and doing better so hopefully the crawling will come soon! Caden will scoot himself around in a circle with his hands while sitting up and attempts to get toys out of his reach so we do lots of tummy time to encourage him to crawl. Caden also started eating regular rice instead of mixey rice in January because he’s finally getting teeth!

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Valor has made some great strides with communicating recently! I’ve started using a two-sided communication switch with him with the options of more and stop. He has used it to request more swing on a couple of different occasions. We’re still trying to work through some of his physical limitations to figure out what the best way for him to communicate is but we made some great strides this past months towards finding him a way to communicate with us!

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Penny is right on the cusp of starting to communicate as well. We’ve been working on a couple of signs over and over again. Hopefully with the repetition it will all click and she will start signing soon. Penny has made some good progress this month with touching new textures and she recently crossed midline for the first time!

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Katherine‘s main progress for the month is that she is getting her cochlear implant! She got approved for a free cochlear implant so once we raise the surgery fees we can schedule her surgery. I’ve also started doing some vision therapy with her. Her new favorite thing to do is to lay under the box I made and look at Christmas lights. She will instantly calm down if she’s crying and stare at the lights all afternoon if I let her.

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Thomas started physical therapy this month along with all the other kids. We got a great new physical therapist who assessed all our kids and is making therapy plans. I’m hoping she will be able to stretch out his muscles enough so that he will be more comfortable!

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Thomas and Kristy during preschool

Darren has started to learn more of his alphabet and can now count up to 5. He knows all of his colors and has became a really great helper with all the younger kids. Darren can write some of his letters and is hopefully getting ready to start school in June!

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In the month of January we also switched over to cloth diapers. The transition has been way smoother than I imagined and it has been saving us a significant amount of money! I’m still working out some of the kinks with leaking and the best way to get them clean in our current set-up but so far it has been mostly good.

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We ended January on a great note with my sister Shelby coming to visit. We’re looking forward to February and all the exciting things that are planned!

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The Next 6 Months

On December 6th I will be getting on a plane to head back to India! It’s been a good time of rest and rejuvenation but I’m ready to head back to my rooftop. And I no longer have a giant hole on my ankle. American medicine is a good thing! One of the best things about being home is that I have time and good wifi to research and make plans for my kiddos. I’ve been able to talk to professionals about my kids and research some ideas. I’ve made some new goals for all my kids that I wanted to share mainly so I don’t accidentally lose all the pieces of paper I’ve written  them on! If you have any feedback or ideas on how to work towards these goals please let me know! Also I’m still looking for a PT who is willing to look at some videos I have of Penny and give me some advice on how to deal with her joints.

Penny

  • Basic Communication. Simple signs or choosing between 2 choices on switch.
  • Self feeding 25% of the time
  • Addressing her lazy eye and swallowing issues
  • Working on army crawling. Purposeful movement to get an object she wants
  • Building play skills
  • Strengthening arms with weight bearing

Katherine

  • Attempting a better sleep and nap schedule
  • Looking into cochlear implant
  • Getting an in depth assessment of her vision to see how she can best use what she has. Using a light box to work on the vision she has
  • Sensory integration (spinning, bouncing, etc) and exposures to different textures
  • Drinking from sippy cup or open cup (no more bottle)
  • Using an object schedule

Caden

  • Setting up room to do his dressing changes in that can be sterilized and kept clean
  • Getting necessary documentation and funds to take him to EB clinic in Bangalore
  • Working on crawling or movement to get toy out of his reach
  • Switching off rice and curd and onto food that has more nutrition
  • No more bottle! Drinking from sippy cup or open cup

Thomas

  • Basic communication. Eye gaze for yes/no questions
  • Better positioning in wheelchair and more time on tummy
  • Weight bearing to strengthen arms and stretch wrists
  • Working on a resting hand splint to get hand in neutral position
  • Gaining weight!
  • Getting out into community more
  • Better pain management
  • More time in arm splints to make hands more functional

Valor

  • Gaining weight
  • Working on a resting hand splint to get hand in neutral position
  • Weight bearing on arms
  • Basic communication. Choosing between 2 objects and using switch to make choices
  • Better positioning while laying on bed
  • Getting out into community more

Julie

  • Gaining weight! Figuring out emotional or physical reasons behind refusal of rice
  • Self feeding 50% of the time
  • Learning more English words and alphabet
  • Counting to 10
  • Building strength back so she can hold her head up for more than a minute
  • Figuring out where she stands academically and a plan for her schooling

Darren

  • Looking into schools for him
  • Working on standing more and building leg strength
  • Mastering alphabet and spelling his name

House Goals

  • Switching completely over to cloth diapers
  • Better cleaning and organization
  • More outings with kids
  • Taking more photos of the kids
  • Get all the kids 50% sponsored (or more)

Personal Goals

  • No more weird infections 🙂
  • Being better about having personal time and sticking to it
  • Better nutrition. More fresh fruit and veggies for me and the kids
  • Blogging more

I’ve decided to start sending out a bi-monthly email newsletter with photos of the kids, news about my home, and prayer requests. If you would like to receive this newsletter please sign up here

Also Rescue Home (the home I live in) is selling these cute onesies to raise money. They make cute Christmas or baby shower presents.

Thanks for following along and caring about my kids! It takes a village to raise my kids and I’m thankful for all the support I’ve gotten along the way.