Archive for the ‘special needs’ Category

A New Adventure in Raising a Service Dog


Growing quickly

We’ve embarked on a new adventure somewhat by happenstance.  For awhile I have been considering a service dog for Cisco.  I had seen the use of service dogs for special needs kids here and there and I really liked the idea of the companionship and assistance of a dog in our life especially the more I’ve read about it.  Cisco loves animals.  He loves to hang with our kitties, watch the guinea pigs and ride horses for hippotherapy.  He recently started working with a therapy dog while doing PT and it has been a good motivator.

The wait for a trained service dog is on the order of two years.  I wasn’t feeling we were quite ready but almost ready to start the application process given the wait time.  The program that we were considering was near by in Ohio and had no waitlist or age requirement, you just had to help raise fund for the organization before being assigned a dog for training.  They sounded like a committed organization doing amazing work to provide for special needs kids but I had some reservations.  The dogs are raised in a large kennel facility.  They do spend time away spending a semester with a college student socializing as a puppy and in basic training at a prison but the rest of there 18 months to two years of training seemed to be at this facility.  I was a bit uncertain about this and so was my Dad.  My Dad felt the best results would be from getting a puppy but I didn’t see how I could handle raising a puppy right now and the success rates of getting a fully trained service dog after raising a puppy reported via facilities and trainers is like 20% especially among dogs not bred for service work.  It is demanding work.

I was on the verge of going ahead and applying for a dog when, during a phone conversation, my dad casually mentions he knew of a litter of Great Pyrenees Anatolian Shepard mixes looking for a home.  He regailed me with the stories of the Great Pyrenees he had before I was born (that had my same name, incidentally) and how he thought a Great Pyrenees would be a great fit for us. I said he could go ahead and investigate the puppy situation.  Before I knew it Grampa and his partner were getting us a girl puppy to train to be Cisco’s mobility and multi-purpose service dog.  Grampa’s partner, LL, felt so committed and excited to help that she insisted on helping Grampa raise the puppy the first 6 months taking care of the puppy’s bills and taking her to Puppy Kinder so she would come to us potty trained, past needle sharp teeth and with a few commands behind her belt.  They made sure I was committed but how could I pass up this opportunity.  Admittedly, this is our experiment.  Great Pyrenees and Anatolian aren’t often used for service dog work but Great Pyrenees are a favorite among therapy dogs.

The new dog’s name is Nana.  This was suggested by LL because it is the dogs name in Peter Pan and we agreed to it as a family because Cisco liked it and could say it.  She is over 9 weeks old and has been living with Grampa and ML for two weeks.  We are assured she is brilliant, doing great in potty training, gets plenty of socialization and is making great progress with leash walking.  Her weak point at the moment seems to be mouthing people and pulling on clothes.  The handler of Cisco’s therapy dog suggested using Bitter Apple spray directly in her mouth when she does it as this cannot be tolorated in a service dog.  We are hoping that will work.  Service dogs must be committed to their charge, taking direction, not barking unless to alert to his charges urgent needs and staying calm and unobtrusive in public.

The plan is for Grampa and LL to so graciously drive half way across the nation to bring Nana to us this summer as long as Nana continues to prove she is a good service dog candidate and she tests negative for hip displasia at 6 months old whe we can check for it.

Wish us all the best on this adventure.  We are causiously excited.  Thank you Grampa and LL!

Nana & the Baby miniPig

Nana Playing with her MiniPig Cousin

Cisco’s First Steps


Cisco took his first true steps this Monday! He was working with his new PT (first real session as we did an evaluation before Christmas). He stood about 5 seconds at the end of his last winter hippotherapy session in mid-December and I have got him to stand a few seconds here or there but not by his choice. In our first session with Children’s Therapy Center his therapist had him standing 5-6 seconds several times and then had him walking with help down the hall. Then it was time to go back to his room and on the way in she had him walk toward her and he made it 8 steps with her scooting back then he fell on her. It was amazing. We have waited so long for this day. He will be 4 in February. This woman is amazing so we quickly contacted her after thinking more sessions during this important milestone would really help. We will see her two times per week this month and maybe next. During our second session this week he did 5-6 steps several times then 10 steps although he will only do 3-4 at home with lots of work and tricks from us. Unfortunately, we can’t keep up this pace for long. PT is our only therapy right now (we also do OT, speech and hippotherapy throughout the year) and insurance will only help cover 75 sessions per year of all therapies regardless of diagnoses. I hope to be posting pictures or video of his walking soon.

In other news, we have had a busy fall. During home-preschool we focused on learning colors through stories and art projects along with therapy practice. Cisco had weekly speech therapy that we discontinued because while his verbal skills are improving we felt our therapist was lacking new ideas, we did OT which we are taking a break from, and we did hippotherapy that is off for the winter. The NP at our Physical Medicine doctors office empowered us to take big breaks. She says that the present research is supporting intensive therapy with long breaks to helps families not become burnt out and better outcomes. I had been feeling this way but felt guilty when I felt we needed a break from one therapy or another.

For the winter we plan to focus on numbers and fine motor skills from wooden puzzles to Montessori type scoop and pincher activities in addition to walking/standing practice.



Cisco’s Progression (age 2-3)


With Cisco’s mobility challenges our focus is all about therapy and basic skills.

I’ve provided regular progression updates for Cisco. My last was in December. Cisco continues to use Sure Step orthotics (the same pair he got in December) and his DMO suit (he outgrew the first one in 3 months, we are now on his second suit but hoping to find a more adjustable and affordable option if he needs to get a third support suit when he outgrows this one). In February, he turned 3 and graduated from the counties early intervention program. We really miss his PT but have continued to have therapy successes privately.

In the spring, he started hippotherapy. It has been the best therapy of anything we’ve done. He is so motivated by the horse. He loves the horses and gets excited when he knows we are going to see them. When we started in March, he could take no independent steps, after we stopped in June he could take 2-3 steps independently when pushed to do so. A few weeks ago, he did a one week hippotherapy intensive since hippotherapy is on break for the summer. It was great. That is the week Cisco started drinking from a cup while holding the cup himself and started crawling up stairs. We were sitting on the bottom of the steps waiting for his turn to ride the horse. I was talking and suddenly i realize he is crawling up the stairs to the platform he uses to get on the horse. The next day, the last day of hippotherapy, he did the same thing. It was wonderful. He’s now back to weekly sessions for the fall.

In the spring, Cisco also took a special needs My Gym class. He really enjoyed it and all the equipment was great for him to climb and explore. We expect to take another class in the winter after hippotherapy is over (there will be a fall session and then we take off the winter) but plan to take a regular class with younger kids as they were willing to let us do that. The special needs class was filled with much larger kids on the spectrum with no mobility challenges. The parents were constantly worried there rambunctious child would hurt Cisco. It wasn’t a good fit.

Cisco is cruising. He is using chairs or anything that will slide on our hardwood floors to push to get around. He can climb on the couch and is just learning how to climb off. He now crawls very well. He’s been experimenting with putting his bottom in the air on hands and feet. He can use his walker to get through mulch and grass now and over small steps. He can get his walker to go any direction he wants to go. He can go a few steps with his strider glider bike without support. We plan to continue PT after the fall hippotherapy session is over.

Cisco now has an Accent 1000 Augmentative Alternative Communication (AAC) Device (basically a tablet with a built in large speaker and picture based communication software). He seems to be catching on but has trouble getting his pointer finger to the right spot and maintaining a pointer finger. I think his vision presents a challenge too. We took a break from speech therapy for the summer but I feel after a break we can work with the speech therapist to make good progress. I have found that he has increased his speech and words quite a bit this summer. He uses two word phrases both verbally and with his Accent 1000.

Verbal Words: mama, papi (dad), door, car, go, that, caca (poop), meow (cat), roar (dog and other animals), der (water), mapa (mommy and papi), dad (his brother), bull, bye-bye, no, and he also attempts many words when we say them as well as has said several words only once or twice then not again.

Signs: water, door, light, fan, potty, done, more, wash, sleep, no.

2014-15 “Report Card”


The Boy with Many Belts

So, did we do all we planned this past year? No, of course not. Do you ever remember finishing the textbook you were given growing up?

We had fun at home learning about our bodies, learning about the modern world, doing math with khan academy, reading great books, watching documentaries, watching good movies, playing music, BBQ with dad, building LEGOs, skying with friends while playing minecraft, helping in the garden, playing board games, learning how to do laundry and mowing the lawn.

We had some great experiences away from home including 4-H hikes, a visit to Williamsburg, a trip to Texas, a trip to New England, camping, going to the hippotherapy “Ranch”, spending time together, spending time with friends, speech therapy, weekly Co-op, enjoying our water park membership, visiting the new Children’s Science Center, attending Theater in the Woods, Organizing/Attending the Homeschool Conference, and playing/collecting pokemon.

Gross Motor Update

New SMOs & Shoes

New SMOs & Shoes

Cisco got his DMO suit a couple weeks ago to help with his posture (he gets very slouchy when sitting up and his lower back is starting to curve) and to facilitate independent walking. What amazed me was about 20 minutes after we put it on him and I put him on my back in our new Toddler Action Baby Carrier, he felt considerably straighter and lighter. No dead weight that has been killing my back. Unfortunately, it didn’t last. Now, for some reason, my back hurts worse when he is wearing his suit. I do notice his back considerably straighter when sitting even at the end of the day when we take it off. He also looks so much taller and straighter with it on when standing or walking. He feels less floppy when I hold him. It is definitely helping even if getting it on is not his favorite. Luckily diaper changes aren’t as hard as I feared.

Cisco also got a pair of SMO orthotics the same day to help provide support for his ankle in hopes of facilitating walking. It improved his stride immediately. He bends his knees when walking with them on but not when off.

He did have to get new shoes to fit the orthotics. I decided to see what the local shoe stores had before ordering special made shoes particularly because I heard they were heavy. I started at Stride Rite reading online that people had luck with them and they have double wide. Unfortunately even with his skinny foot, they didn’t work. He only wears a 5 and there was really just one style in multiple colors. It was a real pain to get on/off and the velcro barely reached across even with double wide. I then went to Payless (not my favorite place) and was pleasantly surprised to find perfect fitting shoes in 5W with a sole that came out and a front bill that was completely detached on the side for easy in and out. They were cute brown shoes with Elmo (once again, not a fan of character shoes but worth it). My only complaint is the lack of breathability. His feet are sweaty when I take his shoes off. I will have to find some sort of breathable sandal for summer.

Prior to the new orthotics and DMO support suit, he has been making progress with gross motor skills. He got a new walker from the county to try , a Little Kaye walker. We had ordered and returned a Snug Seat Crocodile walker after receiving it to find it was bigger then the old Ottoback Busybee he had been using that I thought was big. I am very frustrated with modern manufacturers of pediatric walkers. They promote long use but to make this long use work means that it has to be sized for the larger child (about the size of my 9 year old boy) to use safely and just adjust the handle bars down for the 2 year old to use. I got it for the attendant bar they told me was no longer manufactured upon arrival and the seat that could be flipped down but no one told me the seat wasn’t adjustable and way too tall for my 2 year old.

Back to the Kaye, I am so happy with it. It is an oldie but goody. A design that I’m told has been around for years but they have 5 sizes compared to the 2 for other leading manufacturers, making it much more suitably sized for my 2 year old. It is also very light weight. It has straight wheels that i thought would be a problem by Cisco just picks the walker up a bit and manipulates it in the direction he wants. He loves it. He has one on order right now we hope to get before Christmas that has an adjustable fold down seat, an attendant bar so I can safely guide him or can push the walker if he needs carried. Also, much cheaper then the Snug Seat. He has a little friend the same size that tried it who loved it too and she asked her mom if she could have one (they are in the market for a walker). He recently walked the mall for 20 minutes using it. With the added stability of his orthotics and DMO he his creating a nice stride using his walker for just that little bit of security and balance he needs.

Next on the list: treadmill therapy if I can find an inexpensive treadmill.

Cisco’s Preschool


We are SamuraiWhile Cisco qualifies for public preschool, this summer I decided I know him best and can provide the best educational, therapeutic and loving environment for him. We went on a tour of the preschool before deciding. It was overcrowded and overstimulation for me much less a toddler with visual impairment. It also was not set up at all for a child to be in a walker or belly crawling. I also wanted to focus my energies on a medicaid waiver to pay for his many expenses and get an attendant to help a couple times a week while I homeschool his brother (we got the Virginia EDCD Medicaid waiver based on his disability).

We have been doing “preschool” focused on motor skills and visual acuity. We have been doing fingerplays from Baby’s First Book by Clare Beaton and Tessa Strickland and activities from Everyday Activities to Promote Visual Efficiency: A Handbook for Working with Young Children with Visual Impairments… by Ellen Trief and Rona Shaw. He has also continued weekly speech and sign language, we did OT weekly through October and are back to bimonthly PT with the county early intervention program that is now free thanks to medicaid.

Goodbye Summer


I’d like to reflect on this summer as it comes to a close. We had a very nice summer. We started out with a fairly structured school schedule that just lasted a few weeks then changed gears. We read “Harry Potter 2”, “The Magic Thief: Found”, “The Sassafras Science Adventures: Zoology” and finished “Story of the World 3”. Big Brother enjoyed the Sassafras Twins so much we decided to discontinue “Building Foundations of Scientific Understanding” as our home science spine in favor of “The Sassafras Science Adventures: Anatomy” with the Activity Guide and SCIDAT Logbook.

Highlights included ending the spring/starting summer by meeting up with Grandpa in Tennessee, a visit from Abuelita (my mom) and camping with friends twice at a lake in West Virginia. Big Brother attempted a sleepover with a couple friends that just turned into a dinner and playdate in the treehouse but they had lots of fun. We enjoyed a couple evenings with old friends. Mommy pumped milk for a friends newborn adopted son (I was so happy to give this gift). I was excited to have two work weeks at home and got the school stuff, the kitchen and the studio organized but still have more to do. I enjoyed tending our new large veggie garden with Cisco at my side most of the time eating much and clover. The boys also kept busy with therapies. Big Brother did speech therapy to end with a perfect ‘r’ and improved ‘th’ but we are now taking a break because the spacer in his mouth is interfering with his ‘s’ and ‘z’ so we have to wait until it is removed to continue. Cisco worked on speech and occupational therapy and made great strides with each. His communication continues to improve and he loves brush therapy. As the summer was coming to a close, we finally had made it to the waterpark with friends (we tried all summer and there were very few dry hot days to go then the two times we had tried Cisco got sick to the stomach).

We ended this Labor Day weekend smoking meat, getting a new to us Weber grill , pulling weeds, swimming in our 8′ pool one last time, watching movies and just enjoying family time before our hectic “school” schedule starts up.

Cisco Update (Sat Himself Up Today!)


Snack Time at the Snack Table

It has been awhile since my last entry so I thought it was time for an update.  Cisco is now 2.25 years old.  He still uses the Ottoback walker to walk around and belly crawls when not using the walker.  He’s gotten a little stronger.  Over the past couple weeks he has been bringing his knees in to crawling position but his arms still do not extend.  If I go to help he brings his legs to standing for me to help him stand so I thought he was trying to figure out how to get from laying to standing.  Then, today, he brought up those legs from belly and swung them around to sit up on his very own with no help at all for the first time ever!
Cisco’s speech continues to be quite delayed but his efforts are increasing.  He’s becoming pretty good at imitating musical sounds and other sounds he hears like the cats meow.  I really love how he likes to help Big Brother yell for me and has finally figured out he can get me by saying “Ama” instead of just fussing or crying.  He has more distinguishable signs such as mom, dad, more, done, play, music, door, light, waving hello, and help.  He tries to imitate words.  He is babbling more and more.  For awhile he was getting very frustrated that I was having trouble understanding his needs, as they’ve gotten more sophisticated, then we started doing speech therapy privately on a weekly basis in April instead of just monthly as we did through our county.  It has made a great difference.  We used PECS (Picture Exchange) cards for awhile and he started saying “more” right away as it was one of the first cards we used.  He understood it right away.  We did get away from it though because I couldn’t keep up with all the cards but it seemed to open us up to a new level of communication.
Cisco saw his opto-neurologist this spring for a yearly check in.  His doctor was happy with the results of Cisco’s eye surgery for strabismus and felt that there was no longer any reason to see him.  He did recommend that we start working with a Ophthalmologist again, which we will.  The vision therapist is someone we want to work with in the future but I am finding it isn’t really working for a toddler that doesn’t follow directions.
Cisco’s growth has continued to be slow.  He remains below the chart in height and weight.  Two throwing up sick episodes this winter, unable to keep food down, didn’t help and we found that at his 2 year appointment he lost 4 ounces in about 6 months.  So we went to see an endocrinologist at National Children’s Hospital.  We found out that all his numbers were normal except growth hormone.  His growth hormone is very low.  After talking to the doctor we have decided not to give him growth hormone at present and to re-evaluate at age 6 when they can predict his adult height.  She said the only reason to do it for him would be to gain height and the only medical reason she would recommend it right now would be if his blood sugar levels were low as a result of the slow growth which they are not.  Unfortunately, I wasn’t very happy with the doctors communication skills or respect for me as an intelligent parent but did learn something important after yet another amazing blood draw by the Children’s staff (the had lavender oil going and a light and water display to calm there patients).  The doctor did recommend seeing a gastroenterologist, I think mainly because I kept Cisco wheat-free after discovering without a doubt that it was causing severe Excema for him.  Based on the letter she wrote his pediatrician, she was concerned with my determination to keep him wheat and dairy-free (we are trying to introduce cheese). Luckily, Cisco’s pediatrician agrees with me that the low growth hormone explains his issues of small size and we will work with a dietician to increase calories rather then head to a gastroenterologist.
Did I mention I love Cisco’s pediatrician.  She always listens and has called us on several occasions after receiving letters from specialists or just to check on Cisco.  I don’t always agree with her and she knows that but she is always respectful of me as the parent.
As for the dietician, she works with lots of people that follow a gluten-free diet including herself so her nutritional knowledge is great.  Unfortunately, she is not at all comfortable with children and regular toddler behavior much less my toddlers behavior that includes being very uncomfortable with new people.  As for her knowledge base, she had some great recommendations recognizing his sensory issues that limit what foods he will tolerate and determination to feed himself.  She did evaluate 5 days of his diet and said he is not consuming the calories someone his age should.  I started a snacking table in the kitchen at his level for him per her recommendation to offer food more often and am offering snacks in the car.  He has really enjoyed his snake table that has at least 3 options at any given time.  We have gone from 3 meals and maybe one snack a day to 3 meals and 3 to 4 snacks a day. I have been taking him to the table several times a day and today he actually took himself in his walk to the table to have a bit.

In Pursuit of Independence


Cisco is getting more independent.  He scoots on his belly or uses his walker to explore his house from one end to the other.  He also makes us hold his hands to walk where he wants to go. While we visited family for Thanksgiving for two weeks, he did so well because we took his walker with him.  He checked out everyone and their homes and chased the dogs.  He came back home ready to try a more traditional walker and with new sounds babbling like crazy.  He started using his push toys and leaning his back to stand alone against my legs or a wall and using the two wheeled walker the PT left him but unfortunately it was tippy and scared him when he almost fell and he didn’t want to use it again.

Now lets move forward about a month and the PT finally found us a moire stable walker with four wheels.  It is a little tall but upped the independence yet again.  He is practically running in it at times.  The tires are a little bigger and make a huge difference in the terrain he can go through including going through the grass with just a little help from mom.   It is also lighter and foldable so we can take it with use more easily.  We went to our first trip with the walker to a public place, the library, this weekend.  I was chasing him everywhere.  Can’t wait to go again.

Click HERE to see Cisco in his Ottobock Busybee Walker

The Learning Pod


Photobucket Pictures, Images and Photos
With a little idea searching on my part and the woodworking capabilities of my hubby, Cisco got an early 2nd birthday gift this weekend.  My wonderful husband made Cisco what I’ll call a ” Learning Pod” inspired by the popular Learning Tower and its European “cousin” the FunPod.  

Cisco has become increasingly interested in what we are doing in the kitchen and wanting us to hold him at our level while there.  I started putting him in his Keekaroo highchair (another great invention) by me in the kitchen but really felt he needed to be more a  part of the action.  I started to remember a friend that had a Learning Tower and it seemed perfect except it has a huge footprint that wouldn’t work too well in my small kitchen and it also was very open.  The latter would be a benefit to an “average” developing child for the accessibility of crawling in and out but my little guy is just not strong or balanced enough for me to feel comfortable with him in something so open nor could he crawl in and out at this point.  Then I found the FunPod.  Perfect except the price tag so I was able to convince Dad to make it with Big Brother as a birthday gift.  It took them a day and a half plus about $80 (over 1/2 off a FunPod) to make and it is perfect.  He’ll deny it if you ask him but my hubby is so handy!  

Cisco is loving his Learning Pod.  He has especially enjoyed access to the drawers so he can empty them.