When you can’t walk or talk, how do you interact with your community? Variety Children’s Charity of Illinois exists to solve this problem for children with physical and cognitive disabilities – right here in the Chicago metro area.
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I have often contemplated if having a special needs kid makes for a special dad. I’d like to think so, but the truth is I still burp, need deodorant and annoy my wife, so it is likely that I am ordinary. But maybe that is what makes me special – the fact that I am ordinary.
How dads navigate the path of special needs is a miracle. Now, there is plenty of attention given to moms of special needs and that is very deserving of course. The problem is we dads sometimes disappear into the background. People forget that…
We hear and see the same things;
We will grieve for the rest of our lives;
We experienced the loss of a dream;
We held our breath many times waiting for a sign of life after the resuscitation of our kid;
We ponder endlessly about the future;
We feel anxiety about how the world will treat our kid;
We are frustrated with doctors, wheelchair suppliers and government bureaucracy;
We wonder if our marriage will make it and if our relationship will ever be the same;
And we still wake up in the morning years later, shell-shocked, wondering if it is all a bad dream.
I don’t think any dad of a special needs kid would profess a particular uniqueness, but we would describe an enlightenment that we have been awarded because we are on this journey. We know stuff, stuff we never thought would occupy our mind. None of us signed up for it, in fact if given the option I wouldn’t sign up for it again because I am weak – but I would never ever want to live life without my daughter, Sunny, just the way she is… Do you see the paradox?
special needs dad the mighty
I sometimes see other dads and their kids playing and I feel this ache, like a heavy piece of lead has lodged in my heart, stopping the blood flow. It isn’t that I am jealous because I love my daughter; it is the constant reminder of what is not. The “what I have” is precious, the “what I don’t have” is simply unbearable.
But when the alarm goes off in the morning, the world doesn’t wait and I am forced into the magnetic field that insists life moves on in the same direction despite the ache. I still have to go to work and contribute, which feels so odd when my parallel world seems like a different planet. I force myself to engage in incidental conversations in order to embrace the benign clockwork of life despite the sickening feeling of chaos – because I know if I don’t, I will drown in myself.
So what does it feel like to be immersed in the normal when there is nothing normal about my life? Bloody weird. It feels like breathing water instead of air.
I want ordinary but I don’t know how to be ordinary anymore. I guess that makes me special. Problem is I didn’t want special, I wanted the mundane, but I know myself well enough to know that if I had the privilege of mundane I wouldn’t even know how lucky I was. The irony is, for us to be truly aware of a privileged life, we have to experience the opposite and for our family, the “opposite experience” is not rewindable, it is permanent.
So I reluctantly embrace the title of “special dad” because being an ordinary dad seems like bliss, and relief from that lead in my bloodstream would be nice. As for my daughter, oh God I love her – and I would poo poo this blog entry and dismiss it as blah blah because no philosophical evaluation will ever change what it feels like to hold my daughter Sunny and kiss her cheeks.
This post originally appeared on JayMcNeill.com.
There’s no way you’d spot us in a crowd. We don’t have a secret handshake. But somehow, special needs parents always manage to find each other. Maybe it’s that unmistakable look of exhaustion and resolve many of us wear. Whatever it is, I’ve been part of this family for 20 years.
Even after all this time, I still sometimes stop myself and ask, “How in the world did I get here?” When my son was initially diagnosed with autism and epilepsy years ago, I didn’t know anyone else with a child like him. That was back in the dark ages, before the Internet. There were no websites or blogs to turn to for information and support. There was so much I didn’t know and so much I was desperate to learn; I could have used advice from a seasoned elder.
Now I’m that mom. The one with some mileage on her. There’s no road map to navigate raising a child with special needs, but here are some pointers I wish I’d had when I first set out on this journey.
1. You are the expert on your child. No one else. Not your child’s doctor, his teacher, his neurologist and certainly not your Great Aunt Gussie who raised 10 kids of her own. Listen respectfully to them, but remember they are experts in their own spheres, not yours. All of them –therapists, family, friends — go home at the end of the day. You are in it for the long haul, and you know your child better than anyone.
2. You are parenting a person, not “treating” a cluster of “symptoms.” When your child is first diagnosed, you’re going to hear a lot about the deficits — all the things your child isn’t doing. Don’t lose sight of the fact that behind the “special needs” label there is the same wonderful child you had before the diagnosis, who needs your guidance and love. There’s a saying so popular in the autism community that it is practically a cliché: “Once you’ve met one person with autism, you’ve met one person with autism.” Your child is unique. Yes, you will get all caught up in searching out treatments and therapies, but please take the time to enjoy him right now, because he won’t be a child forever. Don’t let your fears of the future rob you of the pleasures of the present.
3. People will stare. This will eat at you in the beginning. It’s natural to feel uncomfortable, resentful, even mortified. It is also a natural instinct for people to look at anything that’s a little out of the ordinary. Your child’s quirky behaviors in public may draw attention, and what if they do? Stop worrying about it so much. Who cares what strangers think? And I can promise you this: You will learn to never, ever judge any other parent whose kid acts up in public. Eventually, you will figure out how to handle people’s inappropriate questions. I’ll never forget how taken aback I was at a wedding 15 years ago when my husband’s uncle abruptly asked, “Is there any hope for your son?” Sometimes, people may imply that you just aren’t trying hard enough. Or they will offer unsolicited advice or press the latest miracle cure on you. Worst of all, they will talk about your child right in front of him. Don’t let them. And don’t you do it either. Your child may not be verbal (yet), but his ears are working just fine.
4. Take care of yourself. Really. I’m not talking about a trip to Canyon Ranch. A study released a couple of years ago found that autism moms have stress levels similar to combat soldiers. I know there’s nothing you wouldn’t do for your child, but you count too, and you’re no good to anyone if you don’t stay healthy and strong. Physically and mentally. Medication is there for a reason. No, not for your child. For you. Don’t be afraid to ask for help if you need it. Because as all special needs parents know, we need to live forever.
5. You will meet some of the best people you never wanted to know. Other special needs parents will not only validate your feelings and prop you up, they’ll be your best source for information. They are the ones who really, really get it. Embrace those fellow travelers — they’re your lifeline. Especially the wise-cracking ones. Your sense of humor will save you.
6. You and your partner/spouse/significant other are a team. Your child has no one else who loves him more. No question, having a child with a disability is stressful, but it’s imperative that you work together. Feelings can run high; you may each react differently to the diagnosis or disagree on treatment. Don’t focus on what might have been; focus on what you have together. Check in with each other frequently; keep talking about what you are feeling and experiencing.
7. Focus on your other children. When a child is diagnosed with a significant developmental problem, it affects the life of every single person in the family. It can be a big adjustment for siblings. Find ways-frequently-to give them your undivided attention. Let them express the full range of their feelings, in their own words.
8. There will be people who tell you that autism is a gift. Or that God singled you out to be a special needs parent for a reason. Don’t believe them. You weren’t singled out or chosen. What you are doing is rising to meet challenges and simply doing what every good parent does: giving your child everything he needs to thrive. My son has many abilities and strengths; he can be warm and funny and empathetic; he has an amazing memory; he’s a whiz with video games. But I’m not going to lie: Those early years with him were hard and scary. So is reaching the age of 20. His disability isn’t a gift. What is a gift is the joy he and his older brother bring to our lives.
9. Celebrate your child’s achievements, regardless of how they stack up against those of siblings, peers, relatives, fuzzy memories of your own youth or dreams you may have had for your child before he was born. Because there will be many. We waited years to hear our son’s first sentence, and it was a gem: “Mommy, snuggle me.” Your child is going to surprise and delight you, and you will never take any of those hard-won milestones for granted.
10. You will learn with utter certainty what matters most. Parenting a child with special needs will teach you about patience. Humility. Determination. Resilience. Acceptance. You will love your precious, beautiful child more fiercely than you ever thought possible.
This post originally appeared on Kveller.com as part of their series for Jewish Disability Awareness
The following blog post was written by Dana Hunt about her youngest son, Carson Brady Hunt, who was born with a very rare kind of HCU that was not detected through newborn screening. When Dana shared her family’s story, she told me that at 3 months old, Carson was admitted to the hospital for a 3rd time with “failure to thrive.” The doctors told her and her husband to “take him home and love him as he only has about 6 months.” The disorder ate at his retinas, and he is legally blind. They also told the Hunt’s that Carson would never speak.
Carson is now 6 years old. Part of his treatment includes 15 syringes a day, 15 grams of Betaine, and weekly Hydroxycobalomin shots in his leg. He is the epitome of perserverance. Carson continues to inspire those around him with his strength and courage. I couldn’t think of a more fitting person to share my Boston Marathon journey with. I’m thrilled to share Carson’s story & to dedicate one mile to this amazing boy!
Carson was born on July 12, 2007, and almost immediately he began telling us that something was wrong. He was born with club feet, having difficulty feeding, significant congestion, and noisy breathing. We took him to the hospital, where he was admitted, treated, and released with having severe acid reflux and bronchiolitis. Over the next few weeks his condition worsened. Plus he was showing signs of failure to thrive, as he began losing weight and missing developmental milestones such as tracking and smiling. At that point we knew something else was wrong. We took him back to the hospital on September 10, 2007. That’s when the real tests began.
Carson spent several weeks in the hospital being put through just about every test you can imagine.
A genetics consult revealed that Carson had microcephaly, decreased white matter per MRI, feeding problems, and respiratory distress. In addition, laboratory studies revealed that Carson has an extremely rare genetic disorder called Homocystinuria. There are many variations of Homocystinuria, and initial findings suggested that Carson’s version was an MTHFR deficiency. This can be (although not always) associated with mental retardation, microcephaly, gait disturbances, seizures, vascular occlusions, and limb weakness. We began treatment immediately, which included a long list of daily and weekly medications, along with numerous physical, occupational, and eventually vision and speech therapies.
June through December 2008
Nearly 9 months passed and we continued to treat Carson’s genetic condition with the regimen mentioned above. However, we soon started to notice Carson’s eyes shifting and flickering whenever he tried to focus on something. This is called Nystagmus. Most kids have some nystagmus when they are babies, but they eventually grow out of it. Carson was not growing out of it. Over the next few months we visited several ophthalmologists in Kansas, Missouri, Nebraska, and Boston. They all concluded that Carson has Maculopathy (retinal degeneration). Basically, Carson has scar tissue in the middle of his retinas that, to him, appear like black dots in the middle of his vision that he can’t see around. Carson is considered legally blind, although he currently has enough peripheral vision to be mobile. But this is a progressive condition, which means these black dots could continue to get bigger and his vision could get worse. Therefore, he continues to have annual ophthalmology visits at the University of Iowa Vision Clinic to measure how much the degeneration has progressed.
We continued to treat Carson for Homocystinuria due to MTHFR. But in early 2009 his doctors began seeing some inconsistencies with other MTHFR cases. This led to doubts about the original diagnosis. We discussed our options and agreed to have some more tests conducted. However, we’d already done everything we could in the United States, so these new tests had to be done internationally.
We initially sent Carson’s bloodwork to Germany and Switzerland for tests, both of which came back inconclusive. Then we sent a skin sample to McGill University Health Centre in Canada. We received the results from that test in June 2009. These results suggested that Carson actually has a different version of Homocystinuria. He has a cblG deficiency, not MTHFR.
CblG, also known as methionine synthase deficiency, is even more rare than MTHFR. In fact, according to his doctors, there were only 27 other identified cases of this deficiency in the world (Carson is #28). The most common symptoms of cblG include poor feeding, vomiting, failure to thrive, cerebral atrophy, development delay, nystagmus, hypotonia, hypertonia, ataxia, seizures, and blindness. Carson has (or has had) almost all of these symptoms at one point in time.
The good news was that cblG is treated very similarly to MTHFR, so we only had to make a few dosage changes to some of his existing medications.
2010 – Today
We’ve continued to treat Carson with a daily, weekly, and monthly regimen of medications and therapies, and he has made progress. He still has developmental delays, vision impairments, speech issues, and several other concerns, but he’s doing much better than we had ever imagined. When Carson was first diagnosed the doctors said there were so few cases that they could not predict what his future could be. They said he might grow up with limited function, needing endless care and never leave our home. Or even worse, we might lose him before he even has a chance to grow up. Nobody knew, so we’ve continued to rely on Carson to tell us how Carson is doing…all along giving give him the unconditional love, support, and every resource he needs to thrive.
We are very optimistic because he continues to make progress, and we cherish every milestone he accomplishes. Carson lights up the room and is so brave and loving.
He loves to play soccer, swim, hang with his brother and play with his friends. He is fearless and loves amusement parks, water slides and all things “boy”. He amazes us every day!
Some might say he’s breaking all the rules, because he does so many things that they said he couldn’t do. But what would you expect…he’s 6.
If you’d like to make a donation to Nord’s HCU restricted research fund in honor of Carson, or another HCU Hero, please stop by my fundraising page for the 2014 Boston Marathon:
Find the original blog click here: Caron’s Story
By: Terri Mauro
It’s normal for a child to hate doing homework, but for children with special learning, motor or developmental needs, that hatred can blow up into tantrums, meltdowns, and endless nag-a-thons. It doesn’t have to be that way. There are ways to make the homework experience less painful for all involved. You may have to insert some of these things into your child’s IEP to get full cooperation from teachers, but it’s worth it. Done right, homework can provide good reinforcement both for facts learned in school and for parent-child relationships.
Find the right place. It’s good for your child to have a regular spot to do his or her homework — anything that adds a layer of routine to a disruptive task will be helpful. However, it doesn’t have to be a desk. Maybe the kitchen table works better, because it’s easy for Mom and Dad to keep the motivation up while they prepare dinner. Maybe lying down on the floor to do homework works best for kids who have a hard time sitting. Even a place in front of the TV can be a decent homework spot if it keeps the distractible part of your child’s brain occupied so the rest can concentrate on schoolwork. Adopt a “whatever works”approach to your child’s homework workspace. And be prepared to change when it stops working.
Organize your technology. There’s a host of items that can assist your child in completing homework with less stress, ranging from low-tech — a piece of paper with a hole cut out so your child sees only one math problem at a time — to high — calculators, computerized flashcards, apps that solve problems and facilitate communication. Check our list of cool school tools for special-needs kids, and visit these online stores for more good ideas. And don’t shut out those other technological marvels your kids are addicted to. Listening to music on an iPod while working can help tune out distractions, and a video game after working can be a motivating reward.
Stay involved. You want to avoid actually doing the work for your child, but that doesn’t mean you can’t be his or her biggest cheerleader. Some kids benefit from small rewards after very small amounts of work done — a cracker as a reward for finishing a row of problems, for example. Others may need constant prompting and refocusing to get through their work. Reading or rephrasing questions for your child can sometimes help the right answer to pop out. There may be times when you will have to walk away to avoid becoming a distraction yourself, but for the most part, it will be beneficial for your child to see that homework is something you value enough to invest your time in it as well.
Make adjustments. Being involved with your child’s homework has another benefit: You can see what’s easy and what’s hard, what’s quick and what’s too time-consuming. Then, work with your child’s teacher to better tailor nightly assignments to his or her particular abilities. Teachers may feel strongly about the benefits of homework, but they usually don’t want it to be a nightly family battleground. Ask your child’s teacher if you can cut assignments short if they’re causing a problem, or skip them on nights when your child is upset or unable to focus. You may also want to have the option of writing down answers for a fine-motor-impaired child if writing becomes too frustrating. Send a note with the homework detailing your input.
Get the straight story. If your child isn’t bringing home an accurate list of the homework he or she needs to do, work with the teacher to improve the situation. Perhaps your child can carry a homework pad and the teacher or aide can check it at the end of the class or the day. The teacher may have a website that lists homework, or be willing to give you an e-mail address so you can make contact after hours if necessary. If your child has a friend in class, get a phone number and introduce yourself to his or her parents so you’ll have someone to call to double-check assignment details. You may also be able to get a set of textbooks to keep at home so your child will always have the materials needed.
Ensure delivery. The best homework in the world doesn’t do your child any good if it doesn’t get into the teacher’s hands. Kids with special needs often seem to have a special talent for losing, misplacing or forgetting their assignments, and that can send a grade rolling downhill fast. Check for yourself that the homework is in the backpack each day before sending your child off to school. Then check with the teacher on a regular basis to make sure it’s reaching its destination. A chart on which the teacher can check off whether homework was done or not might be a useful option. Use the chart as part of your home behavior plan, giving points or a reward if it’s checked, withholding points or privileges if it’s not.