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We’ve Got This: Parenting a Child with CP

April 29, 2016 by nohandsbutours 0 Comments

My son has Cerebral Palsy.

Mild Right Hemiplegic Cerebral Palsy to be specific, which means only the right side of his body is affected.

If you see him running by on the playground or the soccer field, you might never even notice he has physical difficulties. If you have an idea in your mind of what Cerebral Palsy looks like, you’d probably never connect that mental picture with the boy in front of you.

Cerebral Palsy is a generic, blanket term doctors use for any damage that happens to the brain before about the age of two, and causes physical symptoms. Modern medicine now adds more descriptive words to CP to give a better indication of the exact presentation of symptoms.

My son’s CP was caused by a stroke around the time of birth, a common cause. The human brain is such a mystery to doctors, even today, that no one can tell from an MRI of an affected child just what their prognosis will be. One child might have a very small region of the brain affected (or nothing even visible on images), and yet be fairly severely affected. Others can have massive sections of the brain affected and have very mild symptoms. I say this to help give perspective if a child you are considering is noted as having Cerebral Palsy or abnormal brain scans.

When he first came home at almost seven years old, we concentrated on bonding and general health. My son’s symptoms are very mild, but he had NO stamina. We let him decompress, attach to us, run, play, and build coordination before embarking on a formal assessment of his needs (in our case this was approved and encouraged by our International Adoption Clinic). Depending on the severity of CP symptoms, neurology and therapy may be a more immediate focus for other children.

CP is probably a lot like other special needs – we’ve gone through a phase of “We’ve got this” followed by one of “Oh my gosh, there’s so much to research and address” at least three times in the two and a half years he’s been home.


bethany


Our first real foray into the CP world was a visit to a neurologist. We were given the option to do an MRI or not. Due to his age, all treatment would stem from his symptoms and not the results of an MRI, but we chose to have one to get a baseline image in case he even got a concussion playing sports. The MRI was also able to rule out a couple of rare structural causes for his original stroke, which is nice peace of mind.

Our son’s main symptom is difficulty using his right hand. We saw the hand clinic at Scottish Rite hospital, and he underwent a tendon transfer and related orthopedic surgery after about a year home. They took the tendon he had the most control over and re-attached it in the location that would give him the most useful function when moving his hand. It was a very difficult recovery, since our very active 1st grader was not allowed to run, play, or sweat for five weeks (and in Texas, not sweating is hard even in the spring!). After the cast was removed, it was immediately clear that the surgery had produced wonderful results for our son. Weekly Occupational Therapy has allowed him to capitalize on the progress and make continuing additional gains.


bethany4


Physical therapy was started to keep his affected leg as strong and flexible as possible. Growth spurts often cause increased spasticity in kids with CP, and the six inches he grew in the first two years home challenged us to keep up with ensuring he can run and walk smoothly! He is now also in an AFO (Ankle Foot Orthotic) to help get his toes up and out of his way as he moves, which has reduced his tripping tremendously.

After two and a half years home, my son is on a recreational soccer team, loves most sports, is close to riding a bicycle without training wheels, and is working at grade level in school. We are amazed every day at the ways he figures out how to work with the limitations of his body. We are just beginning to puzzle out some possible learning or processing differences, and are unsure if they are the product of hyper-vigilance, being in an SWI for almost seven years, or related to his stroke.


bethany3


With most of his physical needs addressed, we are more confident entering this new phase. We’ve incorporated our son’s physical needs into our lifestyle, so it barely even occurs to us that not everyone’s kids do stretching exercises on weekday mornings. The OT is a part of our routine as well, just one of those after school activities we attend. Our days are filled with homework, soccer, Nerf guns, and fart jokes – typical nine year old stuff.


If you are considering a child with cerebral palsy, here are a few things to consider:

1. Medical science is just starting to really understand how much potential the human brain has to rewire around damaged area. Neuroplasticity is proven, and incredible gains can be made all the way through puberty, however many doctors, and even neurologists, have not kept up with this research. Do not settle for medical professionals who accept the status quo of your child’s functionality! Dr. Karen Pape has a fantastic blog that discusses advances in understanding of neuroplasticity.

2. There are amazingly supportive groups out there. Find them, and use the group’s combined wisdom to ensure you are getting the best care for your child. Yes, you and your doctor need to sift through the options and decide on the best course for your individual child, but collective knowledge can help you understand the jargon and know what questions to ask to find the best care possible.

3. Find a great neurologist that specializes in Cerebral Palsy. You’ll benefit from the knowledge of cutting edge research and therapy techniques. Our neurologist, even hosts conferences that bring together experts from all over America to share ideas and educate colleagues and parents!

4. The damage that causes Cerebral Palsy can also cause seizures. If you are reviewing a child’s file, be on the lookout for indications of seizures and educate yourself on the different varieties of seizure activity – some types do not resemble the classic grand mal seizures that are most often portrayed on TV.

5. Cerebral Palsy is caused by damage to the brain. Damage to the brain can also cause learning disabilities, some types of hearing loss, and some types of peripheral vision issues. I don’t say this to discourage families from considering this need, but to be realistic about the range of related issues that weren’t always acknowledged as part of CP in the past.

6. Just because you have a two-story house or other physically challenging situation, you may not need to rule out CP or other movement disorders. Many needs can exist on a continuum, and our son has no trouble navigating stairs or uneven terrain!


We began our adoption knowing our son had a medical need. This meant that we embraced his needs as part of who he was from the beginning – part and parcel with his smile and personality. I feel this has allowed us to cheer his accomplishments, enthusiastically research the best treatments, and embrace his therapies and equipment as exciting additions in helping him reach his potential.

We just live our particular life to the fullest.

– guest post by Bethany

Sensory Bins 101

April 28, 2016 by nohandsbutours 0 Comments

Over the years, we’ve had a lot of fun with sensory bins. A few of my little loves are sensory-seeking (often craving sensory input of all kinds), so these bins can be a super interesting way to get them what they need. The great thing about sensory bins is that the possibilities are absolutely limitless. Some are better enjoyed outside, but having an oversized high chair floor mat on hand is helpful for uncooperative weather. Then the inevitable mess can be folded up and dumped back into the bin.

Obviously, children who might eat the sensory materials need to be watched closely, but these bins are an awesome way to occupy time. I like to use these Sterilite containers for my bins because they stack easily for the materials that can be kept on hand. But any plastic bin will do. Sensory materials can be found all over the place – from outdoors, craft materials, and pantry items.


sensory1
water beads


sensory2
coffee beans


sensory3
Oobleck


sensory4
snow


Here are 50 sensory bin ideas:

1. Water beads (a favorite)
2. Moon sand
3, Mini marshmallows
4. Moon dough
5. Rice (plain or dyed)
6. Shaving Cream
7. Tinsel
8. Coffee beans (a favorite)
9. Play dough
10. Fabric scraps
11. Shredded paper
12. Beads
13. Feathers and cotton balls
14. Play sand
15. Corks
16. Dyed spaghetti
17. Craft pom poms
18. Dried corn kernels
19. Easter basket grass
20. Glitter
21. Dried beans (any kind)
22. Baby oil
23. Packing peanuts
24, Kinetic Sand
25. River pebbles
26. Sea shells
27. Acorns
28. Split peas
29. Loom bands
30. Aquarium gravel
31. Assorted dried pastas
32. Sugar cubes (for building)
33. Snow
34. Rocks or small stones
35. Dirt (organic potting soil)
36. Bird seed
37. Straw
38. Legos
39. Ice
40. Play foam
41. Aloe vera gel
42. Buttons
43. Cornmeal
44. Tinsel
45. Polyfill pellets
46. Oobleck
47. Jello (set in a plastic bin)
48. Epsom Salt
49. Cut up straws
50. Sticks, leaves, grass

Many parents like to create “themed” bins for a season, holiday, color, etc. I usually don’t have my supplies quite that together, but there are some very interesting ideas all over Pinterest. I do like to keep extra measuring cups, spoons, etc. on hand though.

Also, many other toys work well as additions to these bins – mini dinosaurs and animals, trains, cars, play plates, bowls, cups, funnels, etc. A lot of these supplies can be purchased at the dollar store. Likewise, simple craft supplies found in the discount sections are perfect to stock up on. I try not to spend a lot of money on the bins, though some supplies are worth investing in. A few of the bins can be stored and brought out for quick entertainment, although many of them require more time to put together and won’t keep well.

The whole idea is to create sensory activities that my kids will enjoy and have fun with!
NicoleNHBOSig

Find My Family: Jade

April 28, 2016 by nohandsbutours 0 Comments

Jade has resided in a foster family since birth. She is fond of playing with other kids, and shares toys with them. She pays attention to keeping clean, she likes wearing pretty clothes.


Jade


Jade was born with a cleft palate which was repaired in 2009. She has delayed language and cognitive development. She goes to first grade in Special education school. She respects the teachers and is polite. She likes to write, color and draw. Jade is described as somewhat quiet and shy. She enjoys outdoor activities but also sometimes prefers watching TV or listening to music. She is designated to Carolina Adoption Services. Contact CAS for more information.

I Never Felt Called to Adopt

April 27, 2016 by nohandsbutours 3 Comments

photo-1

I never felt called to adopt. For me, adoption was simply the way God chose to build our family. In 2011 we adopted our son Sean who is now seven years old. In 2013 we adopted our daughter Elliana who is now five. When people first started saying that adoption was a beautiful thing for …Read More

Xia Waits

April 26, 2016 by nohandsbutours 0 Comments

Xia

Xia will turn six years old in May. She is outgoing and active-she’s described as an extrovert. Xia likes to play with other children, listen to music, and watch TV. She likes toys with bright colors or toys that play music. Xia attends kindergarten which she enjoys. She turns her homework in on time and …Read More

When Jesus Tells You What To Do

April 25, 2016 by nohandsbutours 2 Comments

walk

A Hot Mess This week I got into a conversation about these two big ideas called expiation and propitiation. Sounds fun, right? Don’t worry, I’m not going to open up the discussion here. It’s really boring unless you’re a theology nerd. For sure, it’s an important doctrine, but how important? Important enough to argue over? …Read More

Find My Family: Theo

April 24, 2016 by nohandsbutours 0 Comments

Theo

Theo was placed in his foster family at birth in May of 2014. He was born blind, and has had two eye surgeries in December 2014 and September 2015. Due to his blindness he is not as comfortable with new people, but he enjoys being held and interacting with his foster mother. He can walk …Read More

Countless Possibilities

April 23, 2016 by nohandsbutours 1 Comments

vicky1

As long as I can remember, I always wanted to be a mom. After all, my own mom was the best mom in the world… a woman who loved her girls unconditionally and fiercely. I always wanted to be just like her. As most of us know, life isn’t always how you wish it would …Read More

Blessings in Disguise – My Journey with Sensory Issues

April 22, 2016 by nohandsbutours 5 Comments

ellie1

If you ask most of my friends what their first memories are, they might say something like…“first baby dolls” or “bike rides.” Mine all have one thing in common – a feeling of fear and being out of control. One of my very first memories was standing in the nursery of a small church while …Read More

Find My Family: Edward

April 22, 2016 by nohandsbutours 0 Comments

HAC photo1

Edward is a 3 year old sweet little boy who resides at one of Nightlight Christian Adoption’s 1-2-1 orphanages in China. His special need is Down syndrome. Edward is very outgoing and is always happy to meet someone new. In general his caretakers say that is very adventurous and is always exploring new things in …Read More

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The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.