The following scenario has become an - almost daily - occurrence. My daughter and I will be out and about, running errands, shopping, what have you, and we get the looks. I like to think it's just because Fin is so cute. It's not just a regular stare, there's a curious expression behind it and I can feel when someone is about to engage me in the conversation. The one that starts with, "How old is she?" (Which they are asking me because either I'm assisting Fin with walking or she's using her Kaye-Walker.) I say, "She's 2 and a half." Like clockwork they respond with, "Oh really? Why can't she walk? She looks totally normal, you would never know something was wrong with her." I always smile (some days while fighting back tears) and look them in the eye as I decide on my response. I've said every different answer a special needs parent dreams of saying, it just depends on my mood that day; "Oh... and what does normal look like?" "Ha! Well thank you for the compliment?" "Aww, thanks. We're working on it." Like a deer learning to walk, I'm learning to walk in my role as an advocate. I realize these responses don't help anyone, and usually they just make people feel terrible. People mean well and I understand their intention. My child does not look stereotypically disabled. Which leads me to believe that its not common knowledge to know what someone with Mild Cerebral Palsy looks like. What do they look like? If it weren't for medical devices would anyone be able to tell? You simply cannot judge a book by its cover. I took this search to my Mild Cerebral Palsy Support Group and asked them to share pictures and a little background on their kiddos. I was blown away by the amazing responses and just how different everyone's situations are. We have so much to learn from each other in this life. My hope is to bring awareness to the Mild CP community. Did you know that Cerebral Palsy is the most common motor disability in children? It affects approximately 3 live births out of every 1,000 in the United States.
Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way).
Meet this Mommy's little "Monster" who is almost 3 1/2 years old. This little guy was born 10 days early. At 20 months old he was sent for an MRI, he wasn't walking and could only communicate through sign. By 25 Months old he was walking in SMO's (Foot Braces). He is now trying to run! His mom writes, 'we were originally told to expect him to rely on a walker or device to walk and that he'll only use sign language. Well he proves them wrong Daily. He is my hero and I am so proud. He is now using 4 word sentences and goes to pre-k."
Meet this Mommy's Perfect Son, who is 6 years old. He was diagnosed at 6 months old and that's when he started wearing his glasses. He began to sit-up, roll, and crawl by the age of 2. He started walking, eating food, and talking at age 5. His Mommy writes, "I am very blessed that my [oldest] son is now doing a lot of things on his own."
Meet sweet Callie who is 2.5 years old. Born at 36 weeks, due to preeclampsia issues with mom and was diagnosed with Mild CP at 14 months. She's worn glasses since 6 months old and walked independently around 18 months. She currently wears AFOs for toe walking. Mom writes, "Callie loves people with all her heart, she can light up a room with her smile. Raising a child with Mild CP may look difficult to others, but to us it's our normal."
Meet Mason. 32 week preemie, twin 'A'. No issues in NICU except growing & learning to feed. At 4 months old he started private PT for torticollis (Right side, which we now believe was CP). At 8 months old, he still could not roll over and had very high muscle tone. Also kept Right hand in a fist much of the time. He was Diagnosed at 10 Months Old. He is about to turn 1 and can scoot on his butt, pull to stand, and is starting to babble more. Mom writes, "He has trouble feeding himself with his Right hand and is still very "tight" but most people would never notice anything different about him."
Meet, Naomi. She is 2 1/2 years old. She suffered a brain-bleed at birth. She was diagnosed at 4 months old with mild left hemiparesis. She didn't crawl, but could "creep" or scoot around. At 14 months walked assisted with ankle braces "AFO's". She wore AFO and SMO braces until 28 months old and is now doing fairly well without them. She runs, walks, and climbs to keep up with her two brothers. Lots of bumps and bruises, lots of falls. Her coordination is affected by her CP, and so is her endurance. Mom writes, "Luckily daddy doesn't mind carrying her when she gets tired of keeping up with her siblings. Speech has been affected by her CP, and she works hard to make her wants and needs known."
Meet 3 year old, William. He wasn't using his left hand as much but met his milestones. We ended up getting a diagnosis of mild cp at 18 months old. Confirmed by MRI that he had a perinatal stroke. It effects his whole left side, but that doesn't seem to hold him back!
This is Benjamin! He was born at 39 weeks and weighed 7 lbs. 4oz.. He had a MRI done at 20 months because he kept his left hand in a fist almost all of the time and his left leg didn't act the same as his right. We suspected something was up much earlier, but got some pushback from his pediatrician. He sat up at 6 months, crawled at 9 months, and walked at 16 months. He is only affected on this left side (arm and leg) and has no other delays. He is 4 now and super smart and funny.
Sweet Noa was born 10 weeks premature, weighing 3lbs 4oz due to placental abruption. She stayed six weeks in the NICU and was intubated for the first two days. She was treated for a heart murmur and was a "feeder/grower" for the majority of the time. She had a few "spells" and was kept on caffeine for 5 weeks. At 1 year old, she still couldn't sit independently. Our doctor reassured us repeatedly that she was just behind. I pushed to get into a neurologist where she was quickly diagnosed with spastic diplegia. She has worn glasses since 11 months and AFOs since 15 months. She is 2 now and starting to crawl. She is incredibly ambitious and so funny. Cognitively she is fully capable and verbal. Her fine motor skills are beginning to catch up to her age. Mama writes, "Her resilience is jaw dropping and I admire her greatly. She is being fitted for a walker soon. Most days she wakes up and yells, "Shoes! I walk!" We look forward to seeing what she will surprise us with next."
This is Josiah! He is a 29 weeker, who along with his twin had a traumatic birth. He had a grade 3 brain bleed that eventually resolved but left some scarring. He was diagnosed with Mild Atypical Hypotonic Cerebral Palsy at 20mos old. He struggled with head control, didn't sit up until 12mos and couldn't bear weight on his legs until he had AFOs at 11 months old. He took independent steps around the 16 month mark, and now at 28mos he wears AFOs to help with his pronation, foot drop, stability and endurance. He also has a weak core so he cannot sit up straight for too long. Mama writes, "he's happy and can keep up with his twin brother for short bouts and then he takes a break and is at it again! He's my heart!"
Meet Aiden. He was born at 35 weeks and had a brain bleed that was found during a routine head ultrasound. A follow up ultrasound 5 weeks later found more fluid in his brain. His neurologist ordered an MRI, due to favoring a hand, spasticity in his hips, legs, and ankles, and low muscle tone in his core muscles. At 6 months old his MRI confirmed a stroke at birth. The stroke left holes in the white matter of his brain and created PVL. Through hard work and lots of therapy Aiden walks. He still falls a lot and has coordination problems. Aiden is non-verbal and has been diagnosed with mixed expressive/receptive speech disorder, as well as, a language delay. He also has serious feeding issues. He wears bi-lateral AFOs to control toe-walking and sees pt/ot and speech therapists weekly.
This is Laney. She's just about to turn 4 years old. She has mild right hemiplegic cp. She's affected almost entirely in her right leg. She's not as fast as her peers and tires more easily, but other than that she's not much different from other kids. She's a twin and was born full term with an uneventful delivery. We didn't have a diagnosis for her until just before her 3rd birthday. My concerns about her gross motor issues were largely ignored. It took a lot of follow up on my part to get her diagnosed. Her neurologist believes that the stroke which caused her hemiplegia, happened during the first trimester of pregnancy. I suspect it had something to do with the fact that she had a single umbilical artery.
Meet Rowan. He was born on his due date at home as planned, but lifeless at birth. After a week of seizures, sepsis and organ failure in NICU with moderate hypoxic brain injury, he was diagnosed with CP. Now, at almost 2 years old he walks independently and can nearly run, even jump! He struggles with coordination and speed. He also struggles with gross and fine motor skills. He has no cognitive delays and says many words together. Unofficial diagnosis is "right-sided hemiplegic CP, level 1 on GMFCS scale."
This is Madilynn. She is 18 months old. She was born full term, with many complications. True knit, chd, meconium aspiration, collapsed lung, hypoxic, hppn. She had her heart repaired at 19 days old and got MRSA. The MRSA went sepctic, which requires another OR visit for broviac line. She stayed in the NICU for 6 long weeks, and feeding continued to be an issue. She has no tube, but still has major feeding and swallowing. She also has speech problems. First neurologist diagnosed her with dyspraxia. She is hypotonic, right sided weakness, early hand preferance. She did have an MRI at 2.5 weeks old which was clear. She has a swallow study this month and a second opinion by another neurologist.
Lastly,
Meet my Fin. She was born 9 weeks premature, which resulted in Brain Bleeds. It was a long journey to get her official diagnosis, at 15 months old, because her Pediatrician and Neurosurgeon brushed it off. She was delayed on her Milsetones, but one by one she continues to achieve them all! She has ZERO intellectual disability, so she can understand when someone treats her differently. She loves her Dance class and even rides horses as part of her therapy. Walking Independently is our next big hurdle, and every day she is - literally - one step closer. She motivates us to work hard for what we want, and to never give up hope when the "going gets tough". Her sweet spirit is simply the best & she rocks our world in the best way!
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