A Parent's Perspective - Adventures in Mattyland

Today, please help me welcome Brandi, of Adventures in Mattyland. Brandi is mom to adorable, 2 year old Matthew, who has epilepsy, cerebral palsy (CP), cortical visual impairment (CVI), bilateral hearing impairment, microcephaly, and undiagnosed chromosomal abnormalities. One of Brandi's goals for 2013 is to create a blog that is an asset to other families. Brandi is well on her way to achieving that and today she is stopping by to share some of her insights gained from being a special needs mommy. Read on to learn more. 

Our life in five words:

Busy, Challenging, Blessed, Loving, Committed

Four qualities I look for in a therapist:

1. The ability to establish a good relationship with my child. A good therapist should be able to set up a relationship with a child to let them know what is expected of  them, but also make them want to come to therapy. Establish guidelines with the parents how meltdowns will be handled and communicate how therapies can also be carried out at home so there is continuity. 
2. Creativity. Be willing to step outside the norm to find what best fits the patient. After much trial and error, Matthew's therapists and I set up a plan to have him do his sessions in a darkened room with a standing bubble lamp to calm him. We have also done a lot of different therapy activities on swings and exercise balls because they help him focus better.
3. Show Discretion. If you have something negative to say about the kid, please don't say it in front of your clients. Nothing will kill a working relationship with a parent quicker than unprofessional comments about their child, even more so if you make them in front of other parents.
4. Willingness to Try New Things. We have tried a few different ACC apps on Matthew's iPad and none were a good fit for him. I found one on my own that I found that I could customize with a dark background which helped Matthew see the speech tiles better. Thankfully we have a great Speech Therapist and Occupational Therapist who co-treat and who listen to our concerns and are willing to take a chance on trying something new and different to capture Matthew's attention.

Three resources I can’t live without:

• Blogs and Support Groups. Joining the blogging community has been a lifesaver for me, both as a writer and a mother of a child with special needs. In the beginning of our journey, I had never felt so alone and isolated because we knew no one else in our situation. I was lucky to find a whole community of parents both on Facebook and through blogging who "get it." Some of my favorite blogs are Love That Max, Along Came the Bird, Bird on the Street, Team Aidan, Modified Mamas, and Mommies of Miracles.
• The iPad. The iPad was a huge game changer for Matthew in terms of therapies and communication. He has shown very little interest in conventional toys, unless it's a Hotwheel car or Mater from the Cars movies, but he gets very excited when he sees his iPad. We began using it in therapy in December 2011 and it was like a light switch flipped for him. We have a great list of apps we use with him and change frequently to help with communication, OT skills, and vision strengthening apps. It has also been a lifesaver during long appointment waits and during meltdowns because then I can play his Beatles playlist or play one of his Disney videos.
• Cozi Calendar app for iPad. This app is fantastic! My husband also has this app on his work iPad and it has saved us from a lot of scheduling problems. You can sync the calendar between multiple devices and the computer so that all of your appointments are easily accessible for everyone in the family and you can even color-code appointments for each individual family member. Cannot tell you how much we love this app! 

Two words (or more!) of advice for therapists working with children with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

• Be flexible. What might work for a kid one week might not work the next week. Be willing to try new activities or adapting existing ones.
• Involve parents as much as possible and try to give them as input as possible. No one knows best what works for a kid than their parents and ultimately they are the ones who have to put therapies into action at home. 

A word of advice for the parents of a child newly diagnosed with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

When your child is diagnosed, it is perfectly normal to be in denial and to mourn your idea of "normal." Your life is about to change in ways that you won't be able to comprehend. The most important thing is to build your family a village of friends, family, trusted therapists and specialists. One of the best decisions I've made since Matthew started collecting diagnoses was to open myself up and start seeking out other families who are going through similar circumstances that we are. If you're reading this and don't have people to talk to, email me and I will help you get started. 

One dream for my child:

My biggest dream is that Matthew be able to communicate with us. One of the worst feelings as a parent is seeing your child's frustration when they cannot communicate with you.

What I do to rest and recharge:

One night a week, my husband takes Matthew over to his parents’ house to hang out and gives me a night off. I use that time to read, blog, watch movies, shower and sometimes sleep. I get time off and my in-laws' get time with Matthew so it is a win-win.

Thanks so much for stopping by, Brandi! Readers, be sure to follow Matthew's adventures at www.adventuresinmattyland.blogspot.com. You can also follow along on Facebook, Twitter, and Pinterest.

Holiday Gift Guide 2012 - Gifts for children with visual impairments

Today I'll be sharing some toy suggestions for children who are visually impaired. When choosing a toy for a child with a visual impairment, remember to keep the following in mind:

• Does the toy provide multi-sensory exploration (i.e. sounds, lights, textures)?
• Is the toy high contrast (i.e. black and white)?
• Does the toy make use of my child's vision?
• Is the toy easy for my child to manipulate?

Babies:

All babies are beginning to explore their environment through reaching, grasping, and sensory exploration. Here are some toy suggestions to help your baby with a visual impairment to reach, grasp, and explore his environment.

Oball Rattle

- The design of the Oball makes it easy for little hands to grasp and the sound of the beads inside the ball makes the ball even more interesting to babies. As your baby grows and becomes more interested in balls, the auditory feedback provided by the beads inside the ball will be helpful to your toddler with a visual impairment.

Oball Shaker

- The Oball Shaker is also great for little hands to grasp and contains beads to make a shaking sound.

Textured Rings

- Rings encourage grasping in babies and a variety of textures are great for sensory exploration. I also like that these Sassy rings have a high contrast ring to hold the rings together as one unit.

Kick and Play Piano

- A kick and play piano is great for encouraging leg movements and provides auditory and visual feedback by playing music and lighting up when activated.

High Contrast Play Mat

- I love the high contrast provided by this Wimmer-Ferguson play mat by Manhattan Toy. The contrast provided by black and white is great for all babies and especially babies with a visual impairment.

High Contrast Baby Toys

 
- The Wimmer Ferguson series by Manhattan Toy also has these great high contrast shapes. The pyramid jingles, the ball crinkles, and the cube rattles.

High Contrast Board Books

-While we're on the topic of high contrast (are you seeing a theme here?), we can't forget board books for babies. Shasta, the mother of a child with cerebral palsy, has written and published a board book, Dark & Light: A Love Story in Black and White. As a bonus, all proceeds go toward her son's therapy expenses!

Toddlers:

Toddlers continue to learn through their senses and they are also on the move! Here are toys that will help your toddler learn and grow.

Teachable Touchables Texture Squares

 
- Use these textured squares to work on matching and sorting. The textures are great for children with visual impairment and if you are handy with a sewing machine, you could save some money and easily make something similar yourself.

Gertie Ball

- The knobby texture of the Gertie Ball makes it great for toddlers with a visual impairment learning ball skills.

Sound Puzzle with Braille

- A talking puzzle like this one from Melissa and Doug is great for to help toddlers identify shapes by touch and sound. As an added bonus, this puzzle also includes Braille. If you're interested in more puzzles with Braille, Melissa and Doug have a series of puzzles that contain Braille.

Wooden Braille Blocks

- If your child will be learning Braille, these alphabet blocks are a great introduction to the letters. There is also a math set that might be more appropriate for slightly older children.

Touch and Feel Books

- Toddlers love to look at books. For the toddler with a visual impairment, there are a number of fantastic touch and feel books available for a more engaging experience.

Preschoolers:

Preschoolers continue to grow and learn. This is also the age when children become more interested in building things.

Floor Piano

- A Floor Mat Piano, such as this one from WinFun, will encourage your child to get up and dance around.

Trampoline with Handle

- A trampoline with a handle will help your preschooler develop jumping and gross motor skills.

Jinglin' Ball

- This ball with jinging bells inside provides great auditory feedback for children learning ball skills.

Bristle Blocks

- I mentioned that preschoolers like to build. The textured surface of Bristle Blocks make them great for children with a visual impairment to manipulate.

Touch and Feel Alphabet Cards

- These SENSEsational Alphabet Touch and Feel Picture Cards are a multi-sensory tool for learning the alphabet.

Scented Markers 

- Scented Markers make coloring a multi-sensory activity for children with a vision impairment.

School-aged Children:

When children reach elementary school age, they begin playing more games with their peers. Here are some game and toy suggestions suitable for children with a visual impairments.

Bop It

- Bop It is a fun game that relies on listening skills, as it gives verbal commands for various movements (e.g. twist it, pull it, spin it).

Raised Dot Dominoes

- This set of dominoes has raised dots, making it easier for a child with a visual impairment to access the dominoes.

Large Print Playing Cards

- These playing cards contain both large print and Braille.

Braille Board Games

- In addition to large print playing cards, a few board games and card games are available in versions that contain large print and/or Braille, including Scrabble, Monopoly, Yahtzee, Go Fish, Old Maid, and Uno.

Looking for even more ideas? Be sure to check out my Amazon Store!

*This post contains affiliate links.
 

Baby's Musical Hands

While I don't agree with using apps purely to distract or to keep a baby busy, I do think some apps have therapeutic value for babies. Baby's Musical Hands by Streaming Colour is one of those apps! This simple cause and effect app contains 15 brightly colored squares that provide audio and visual feedback when touched. The red squares make drum sounds, the yellow squares play piano notes, and the blue squares play guitar notes.

Screen prior to activation.

Bubbles appear after screen is activated.

How I use Baby's Musical Hands in therapy:

Since this is a basic cause and effect app, I frequently use Baby's Musical Hands to encourage reaching, especially in infants/toddlers with hemiplegia. Since most babies love music, this app can be a motivator for babies with hemiplegia to reach with their more affected arm.

Toddler reaching with affected hand.

I've also used this app as a motivator for weightbearing. I simply lay the iPad flat on the floor and then have the infant place his or her hands on the iPad screen while maintaining a crawling position. The baby can look at the screen and the screen continues to activate (making music and lighting up) while the baby is weightbearing through his arms.

Other possible therapy uses:

• Encourage visual tracking in infants with visual impairment
• Encourage head turning in infants with torticollis

What I like about this app:

• Activates easily, doesn't require precise fine motor movements
• Engaging and motivating to babies
• Can turn down the volume to allow for visual feedback only

Room for improvement:

This is a basic app that does what it sets out to do. I think it is great just the way it is and I don't see any reason to change the app!

Best for ages:

• Infants and toddlers

Bottom Line:

Would I recommend this app? Absolutely! For the price, this app is well worth it. In my experience, babies and toddlers are drawn to its music and bright lights, making this an engaging and motivating app.

Baby's Musical Hands App Information:

Name of app: Baby's Musical Hands

Publisher: Streaming Colour (www.streamingcolour.com)

Compatible with: iPhone, iPod Touch, iPad, Android. Requires iOS 4.1 or later. Android 2.3 and up.

Price: $0.99 available in the iTunes App Store or Google Play Store for Android devices.

Do you use Baby's Musical Hands? What therapeutic uses have you discovered for this app?

In my therapy bag...checkers

Checkers can be used for many activities other than grasping (stacking, counting, sorting), but I'm going to show you how I use them to work on grasping with little ones with visual impairment. Remember, checkers are small enough to be a choking hazard, so use close supervision at all times!

I have these great wooden checkers that are high contrast. Sorry, I don't remember where I got them!
When placed in my hand, the black checker provides a high contrast against my skin, making it easier for a child with a visual impairment to see. The texture on the checker is fun too!

You can also place the black checker on a light colored surface, or place the light checkers on a dark surface.

What do you use to provide high contrast when encouraging infants and toddlers with visual impairment to reach and grasp?

A Parent's Perspective - Thomas Marshall Does It All

Today I am pleased to welcome Jessica of Thomas Marshall Does It All to share a parent's perspective on life with a child with special needs. Jessica is the mother of Tom, who will be turning three this fall. Tom has several diagnoses: blindness (Light perception, Persistent Fetal Vasculature Syndrome), Microcephaly, hypoplastic corpus callosum, and hypertonia, but that doesn't slow him down! He is running and jumping and doing many things that people said he probably would not do. Tom has a delay in speech and uses a combination of sign language and spoken language to communicate. He has been through many surgeries and procedures but he is a happy and carefree child. "I feel very lucky to be his mom. I can't want to see what he does next!" ~Jessica

Our life in five words:

busy, therapeutic, funny, musical, physical

Four qualities I look for in a therapist:

1. Clear goals
2. Open to ideas and going into the community (for real life experiences)
3. Keeps appointments
4. Challenges my child

Three resources I can't live without:

Trampoline - Tom is a high energy child and he needs physical stimulation to replace the visual stimulation he is missing because of his blindness. A trampoline has been a great way for him to release some energy that doesn't depend on weather.

iPad - Tom listens to audiobooks, plays games and listens to music on his iPad. We use it EVERY day. I want him to grow up comfortable with technology.

My blog about Tom - It helps me share the things I have learned and the resources I have found. There are so many things that I wish I had known earlier and I love being able to share that with other families. It also allows me to connect with other parents of blind children and there aren't that many of us so it's very nice.

 

Two words (or more!) of advice for therapists working with children:

As a parent, I truly value the therapy my son receives (through EI and privately.) I am constantly searching for information and new ideas for my child. I feel very lucky that my son's therapists have been open to my ideas and questions. When I have concerns they have gone out and researched options and taken me seriously. I will really miss my son's EI therapists when he turns three in the fall. We have become friends!

A word of advice for the parents of a child newly diagnosed with blindness, microcephaly, hypoplastic corpus callosum, or hypertonia:

iPad Light Box

On Monday I wrote about the Baby Finger app. While working with a kiddo with a visual impairment (who is very drawn to light and her light box), I thought, "I wonder if I could use my iPad like a light box?"

Using the blank screen on the Baby Finger app, this is what I came up with:

In a dark room, I placed two rings on the iPad screen. Check out that contrast! Now it is much easier for a child with a visual impairment to see the rings and reach out for them.

The only problem is, the Baby Finger app will display an image and a sound if the screen is touched. So, I searched the app store for light box apps and this is what I found:

ILoveFilm - This app is designed to look like an old light box that is used to view images from photography film. Remember, cameras use to have film in them? There is a small border as you can see in the screenshot below, but overall it works well as a light box. I would prefer it without the border, but for a free app, I really can't complain.

Light Pad HD - I haven't tried this app, but it has consistently positive reviews in the app store. The Light Pad HD app is designed to view photo film or x-rays, and provides an option to light up the entire iPad screen, without any border. If you really don't want the border that the ILoveFilm app has, this app is probably a good option for only $1.99.


Have you ever used your iPad as a light box? If so, how did it work? What apps do you use with children with visual impairments? Please share your experiences in the comments below!

Baby Finger App

The Baby Finger app by DJ International is a simple cause and effect app that quickly captures the attention of babies. While I am not a huge proponent of entertaining babies using electronic devices, I do feel that this particular app can have great therapeutic uses for babies. And guess what? It's free!

The app starts with a blank screen. Each time the screen is touched, a shape appears along with a sound. Keep touching the screen and more shapes will appear, as you can see in the screenshot above. Touch a shape that is on the screen, and it will disappear along with making a sound. While some of the sounds are a little odd (toilet flushing or farting sound, yes, I'm serious!), babies seem to love this app! They especially love when it makes a cooing baby sound. There are also options to have numbers appear on the screen or a combination of numbers and shapes, but I usually stick with just the shapes.

Here's a video showing an infant with high muscle tone and limited arm control reaching out to activate the Baby Finger app:

Ways I use the Baby Finger app in therapy:

• To encourage reaching, especially in children with high muscle tone
• To encourage finger isolation
• To encourage visual tracking in children with a visual impairment
• As a motivator when working on head control or tummy time

How do you use the Baby Finger app in therapy? What other apps do you use with infants?