mother kissing her young daughter (photo credit: Mily Cooper Photography)

10 Questions Every Parent Should Ask at an IEP Meeting

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In my career as an elementary school teacher and intervention coordinator, I’ve sat in hundreds of individualized education program (IEP) meetings. They’re a regular part of my weekly schedule.

This is probably a weird thing to say, but I actually really like them. Why? They’re an opportunity. It’s a chance for families and support staff to sit down and communicate, a chance to hash out plans for children who need support and a chance to create a positive learning environment for every child.

An IEP meeting is a chance for school personnel and parents to communicate. The one thing I say to every parent before an IEP meeting? Be prepared. Do your homework. An IEP meeting can be an amazingly positive experience if everyone is able to communicate clearly.

Here are several things to do before an IEP meeting:

• Observe in your child’s current classroom setting.

• Reread their expiring IEP if they already have one. Do you feel their academic and behavioral goals have been met? Be prepared to share your thoughts.

• Make a list of concerns and a list of accomplishments. What is going well? What is still a challenge?

• Research the academic standards for your child’s grade level. Consider where they currently fall in terms of those standards. They may need support still, and that’s totally fine. But the more you’ve thought about these long-term goals, the more prepared you’ll be to speak to them and to listen to the team.

• Be prepared to ask questions (a lot of them).

Once you’re at the IEP meeting, here are 10 questions you should ask:

1. How can I contact you?

Ask each member of the IEP team (classroom teacher, resource teacher, speech therapist, occupational therapist, etc.) the best way to contact them. Let them know you’ll be checking in regularly. Set progress reporting meetings.

2. When is a good time to have an informal conversation about my child’s progress?

A couple years back, I had a parent ask if they could come in the mornings before they started their work day. This mother wanted to be able to get weekly feedback about her child’s progress. So she came in one morning a week and helped me pass out papers before the children started their day. She sharpened pencils with me, and we got a protected time to chat. It was an amazing experience. I was more than happy to talk to her, and her assistance while we chatted was a wonderful way for her to give back to our classroom.

3. What do you see as my child’s strengths? How can I support and encourage them?

An IEP meeting shouldn’t be all about weaknesses or discrepancies. Ask how you can support your child’s strengths and passions. Those things are what will make your kiddo successful as an adult.

4. What type of progress can I expect to see? What will this look like?

The great thing about an IEP meeting is that you get the input of specialists. But it can also be tough at times. There are acronyms, teacher speak, developmental milestones — it can be very overwhelming. After each IEP section, ask the team: What should this look like? How long will it be before I see progress? What are the signs that we are moving in the right directions? What should I watch out for?

5. What can I do at home to support our goals?

For students to make the most progress (emotionally or academically), goals need to be fluid between school and home. Ask the team: What can I do at home? Ask for specific suggestions. If it doesn’t make sense, ask for more information. 

6. Which of these goals are the top priority?

By the end of an IEP meeting — between behavioral goals and academic goals — you might feel like your head is spinning. Important things to ask: Which goal is top priority? Is it behavioral (transitioning to school, for instance)? Is it academic (phonemic awareness, etc.)? Ask the team. That way, you’ll know what to focus on in discussions about school.

7. How will we measure progress? How will we communicate about this with my child?

Progress towards goals (both academic and behavioral) can be measured in many ways. Will the team be using test scores? A running record with observations of the child? A tally system of behaviors being exhibited (or not exhibited)?

8. What do these supports look like on a daily basis? How will my child’s day look?

Academic and behavior supports can be provided in many ways. Will the supports be a pull-out model (student removed from the class for small-group support) or a push-in model (the support staff blends into the classroom for a period of time)? I’ve often sat in meetings where parents were unaware their child was being taken to a separate classroom for academic support and seemed surprised. You should know exactly what your child’s day looks like!

9. Who will provide these supports? How will my child’s classroom teacher be provided with resources and assistance to implement these supports?

The best thing about having a support team in place? Everyone helps each other (that includes you, mom and dad!) Ask questions. How can you support the teacher? How can the speech therapist support you?

10. What would you do if this were your child?

An IEP meeting can often be all business. In the end, what would I want to know? If this were your own family member, what would you suggest? Trust me, you’ll get some pretty honest answers.

A version of this post originally appeared on Lipgloss and Crayons.

Photo credit: Mily Cooper Photography



10 Questions Every Parent Should Ask at an IEP Meeting
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8 Rare Parenting Lessons I've Learned the Hard Way 

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Learning is a difficult process, but I’m a good student. I need to be. I have a child with Allan-Herndon-Dudley syndrome.

What? You’ve never heard of this syndrome before?

Don’t worry — neither had we until our son was diagnosed. At that moment, learning became a way to survive, a necessity. But learn from what? There were no previous mistakes to learn from. There was no previous anything. So one way or another, we needed to learn from our own mistakes.

I’ve always been better at finding solutions to a problem after bumping my head on it. The only difference now is the stakes are much higher. So here are some problems I bumped my head into during this last couple of years. Some, I must admit, left a mark. Some are so fresh they are still hurting. And some — well some I would have liked to be able to learn them from someone else.

1. Stand your ground. Here is the understatement of the day: “Being a special needs parent is never easy.” No, it’s not. It’s damn straight hard. Sometimes you are so tired you feel you are burning energy directly from your soul, the only power supply left. You keep going because this is what needs to be done, because your child needs you and because you love him or her more than you love life. Here is the thing though about being a special needs parent: you always need to be in standby, you always need to be prepared, and this continuous surge of energy can drain you. Don’t let it! Make being prepared a state of mind, not a state of restlessness. You will never be able to do anything but survive the day, unless you get a hold on the ground beneath your feet.

 2. Get rid of unnecessary emotional baggage. Yes, it’s hard to make peace with the idea that your child was the unlucky winner of faulty genes, and it’s even harder to accept the fact there is nothing you can do about it. But carrying that emotional weight day in and day out will not help anyone, least of all your child. Try your best to accept it and move on.

 3. Start controlling things instead of letting things control you. Until now, every institution we’ve met in regards to my son has based its reaction on the fact that we have too much on our plate and we won’t have the energy or the courage to go against them. They assume we will accept how things are because “that’s how things are” — that we will complain about it to our friends and family, victimize ourselves for a while, get a couple of sympathetic shoulders to cry on and move on.

I am a firm believer you should change what you can change and accept what you can’t change, but this situation does not, under any circumstances, fall in the accepting category. This needs to be fought with a vengeance.

There are 30 million people living with rare diseases in the EU alone. That is almost half the population of France. Can you even imagine the impact 30 million voices could have? Everyone counts on special needs parents and patients to be quiet, compliant and retreated in their words. The best thing you can do is prove them wrong.

4. Don’t expect others to make the change you need. Gandhi said, “Be the change you want to see in the world.” I’m telling it as I see it. If you expect others to make the change you need, you’ll be waiting for a very long time. The system will not change easily and no one else, except yourself, will go the extra mile for you. I’m not being bitter, just harshly realistic.

So try and stop waiting around for decision makers, doctors, insurance companies or health care providers. I know you feel that after everything you’re going through, you deserve some help, you deserve a break. And you are right, but the one person who can help you the most is you.

5. Don’t judge others by how bad your day was. Be sure that if you were to compare fairly, your best day would probably be anyone’s worst nightmare. You have a complicated and hard life. This is why, comparing others’ problems with your own is never helpful. Yes, all those problems seem small and insignificant to you. Yes, they might have no long-term impact like your problems do (you cannot compare spilling your coffee on your favorite shirt to your child’s inexplicable spasms that not even doctors can explain), but you should not look down on other, “normal” people’s problems. 

 6. Don’t demand help, appreciate it! A helping hand, a smile, a good word… appreciate them. Be grateful when people chose to get involved and help you in any way they can, even though they might have other things to do.

7. Trust your judgment. Read, research, ask, talk to specialists, therapists, doctors, anyone you think will help you get a different perspective on things, but in the end use that information to make your own decision. You are the one who knows your child best.

 8. Never let go of hope. It’s not always easy to keep hoping when life hits you this hard, but you should never let go of it. Sometimes you will be afraid to hope. You might think the disappointment will crush you and you can’t afford to go back to the dark place where you won’t have the energy to crawl out again. But hope is worth the risk. Hope gives you strength you never knew you had. Treasure it!

Follow this journey on Andreas Rares

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When I Think About School for My Son With Global Developmental Delays

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School is not a subject I find easy to talk about – and my son Brody doesn’t even go yet. He’s 4 and a half years old and should have started this new school year, but we chose to defer him, so he’ll start next year.

For me, school is a significant milestone, and another one of those doses of reality that pop up once in a while to remind you that life isn’t quite straightforward – like birthdays, Christmas and important hospital appointments. I struggle to talk to anyone about it without getting teary-eyed, so with a year of TAC meetings to coordinate his services and a lengthy school application coming up, I need to find my best game face!

When Brody was born, we didn’t know he had disabilities. I imagined us walking to school together and me chatting to the other mums at the gate. I imagined he’d have a best friend and would come home and tell me about what he had learned. Maybe he’d do that thing where they take home the class teddy bear for the weekend and we’d write about their adventures. I had a vision of him starting school with my friends’ children, who had babies at the same time as me. We’d go and watch them in class assemblies and Christmas plays together. I imagined a whole different future.

A year or two ago, I believed this might still be possible. Maybe I pinned too many expectations on nursery school, just like I had initially – maybe naively – thought that speech and language would magically make him talk or occupational therapy would have him blowing out birthday candles.

Brody has progressed by leaps and bounds since starting nursery. They have worked really hard with him — I have a month by month list on my phone of the past two years with his achievements big and small, from stepping up a curb unaided to signing “more”. Nursery has been wonderful and I am truly grateful to them, as I once thought I’d never feel comfortable leaving him with anyone. Best. Nursery. Ever.

However, Brody is still primarily undiagnosed, with severe global developmental delay and other disabilities. So here we are, about to start the school application process and he won’t be able to go to a mainstream school. Although I love him with all my heart and wouldn’t change a single hair on his perfect head, I still feel sad about it. There will be no walk to the local school. Instead there will be a school taxi or bus to another village because our local school can’t accommodate his needs.

Last year, I visited the school he will hopefully attend. It seemed nice. Everyone seemed happy. But it was very quiet. It just wasn’t school as I know it. And that’s just something I need to come to terms with. I listened to the head teacher talk and kept that game face on really well — honestly, I’m quite good at it if no one gives me an empathetic look or asks if I’m OK. Then I got to the parking lot and those annoying hot tears started to flow. You know, the ones that just won’t stop.

Being a mum to a child with disabilities, and having some friends who have children with life-limiting syndromes, I know how fragile life can be. When I take a step back from the “what ifs,” I recognize how lucky I am that Brody is able to go to school. And I am so thankful. I’m sure he will enjoy it too. That is what is important. That is what I need to focus on.

School is a special milestone for every child. Maybe we won’t be walking the same path as everyone else, but we’ll be walking our own unique one. Hopefully we will meet some friends on our journey. It’s always a great tonic meeting others who walk similar paths.

Brody will learn, continue to amaze us and make us proud. Brody will make friends. And Brody will have fun.

So I’m going to take a deep breath. Put that game face on. School application… here we come.

This story originally appeared on and was written for Family Fund.

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For the Moms Who Knew ‘What to Expect,’ But Woke Up to the Unexpected

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When I was pregnant with my firstborn, I devoured pregnancy books and glossy motherhood magazines. I memorized “What to Expect When You Are Expecting,” excitedly ushering each week, month and trimester of pregnancy in with a new chapter of pregnancy facts and baby trivia. When my son was born 14 years ago, he was the picture of health — a textbook pregnancy and scrapbook baby.

Two and a half years later, we welcomed our sweet baby girl into our lives with the exact same bushel full of love, gushing pride and our bucket list of dreams. We assumed, despite an ultrasound at 20 weeks that alerted us to our unborn daughter’s solitary kidney, that the doctors were correct in reassuring us she was indeed going to enter our world with the picture of health, happiness and pride. Instead, we found our world turned upside down and our hearts filled with anguish as we tried to put our broken dreams back into the 1000-piece puzzle of parenting a special needs child.

The reality of what to expect with a baby who was in need of heart surgery and eventually diagnosed with 22q11.2 deletion, a syndrome that causes severe immune problems and a list of almost 200 other possible health and developmental difficulties, was initially terrifying. Every thread of pride and amazement was replaced with a blanket of fear. As a 29-year-old, jogging, health-food eating, prenatal vitamin-taking mom, I expected to be pacing the halls of the Children’s hospital about as much as I expected to win Powerball. And yet, there I was, with the excruciating feeling that luck had run out for my child.

Now, 11 years later, my daughter has rocked our world with her perseverance, her courage and her sheer happiness. She endured surgeries, therapies, interventions and an endless stream of specialist appointments. She eventually learned to walk and talk, but first she learned to wink, use sign language to tell jokes and to belly-laugh — things that brought us more joy than any word she has ever spoken. The happiness we find in the little, everyday things surpasses our joy in the traditional, once-expected milestones tenfold, because our miracle girl beat the odds.

We hit the jackpot after all.  

Today, remarkably, when someone meets my daughter, they may not even know our story because she “looks” typical. The blessing is, on an average day, she lives the life I had only dreamed of when her genetic testing came back positive for a rare syndrome. The “curse” is that I am caught in many conversations with people who don’t understand where we have been and who speak about “normal” pregnancy and parenthood without thinking twice.

On a recent mom’s night out, I had a conversation with a gaggle of neighborhood moms about pregnancy and parenthood as we waited to order our dinner. By the time the food arrived, I was no longer hungry. The night left me wondering who I would be without the detour my life took the day our daughter was born. The top lessons I learned as a special needs parent were highlighted before the appetizers even reached our table.

1. When you are pregnant, having a healthy baby is not a choice. With a few pregnant women in our midst, everyone at the table seemed to agree on one thing, “I don’t care about whether the baby is a boy or a girl, just as long as the baby is healthy…that’s why we are having/had kids while we are (insert any adjective). ”

For every person who has visited their baby in a hospital or spent challenging hours in a pediatric surgery waiting room, you are implying they were not “that adjective” when they were expecting.  

Ouch.

Just because you do or don’t drink caffeine, smoke, work out or fit in the under 35 “high risk” category, it doesn’t mean you have made a choice to have a healthy baby. It is luck of the draw, folks. So, don’t be too quick to pat yourselves on the back, because to the person in my shoes, it is like saying I chose to have a daughter with significant health problems. While I can’t claim to understand the exact scientific explanation of my daughter’s 22q11.2 deletion syndrome, I do know that I most certainly did not cause it.

2. I now understand the word “normal” is relative and oftentimes is hurtful. Saying that you “can’t wait to get back to normal” when you have a baby, and listing all of the things that you miss while you are pregnant, from cocktails to workouts to skinny jeans, are akin to nails on a chalkboard to someone like me.

Like these chatty moms, before giving birth to my second child, I had no idea what it was like to parent a child who has a long list of special needs and an even longer list of lifelong challenges. When my daughter was little, and even now in the midst of trying to find understanding for our exceptional daughter in a judgmental and competitive world, I simply wish for others to have more empathy for those with differences.

While I listened to the moms’ light-hearted banter about their favorite parts of getting back to normal, whether it be Pilates or red wine, I recalled the moment I understood how precarious “normal” can be. When my daughter was 6 weeks old, our pediatrician heard a “loud heart murmur” at her checkup and we were sent directly to local hospital, where an IV was hooked up to her tiny forehead. We were then transported two hours later to a bigger hospital via an ambulance with only our diaper bag, a granola bar and no change of clothes. Nothing could have prepared us for the sheer terror that took root as we watched all normalcy slip away.

Our “normal” was a steady stream of doctors and me nursing our immune-compromised, sleep-deprived daughter for the next three and a half years.  Even 11 years later, we will never “get back to normal.”

3. Life doesn’t always follow your plan.  As moms exchanged stories about how they worked hard to quickly get back into their routines, I felt like I was on the other side of the Plexiglass in a cab, unable to relate to their experiences or chime in even though we were seemingly all traveling down the same parenting road. What I have realized is that you never know what others may be experiencing or what you are taking for granted, so count your blessings and know that they are just that: good fortune. It is wonderful to have life go according to your plan and routines, but like countless other moms, I realized that the plan only works until your world falls apart. Then you know that life really isn’t a “Choose Your Own Adventure” after all. Be grateful and don’t judge. You don’t know what path others have taken to get to today nor the challenges they face.

4. Whether it is an easy pregnancy, an easy baby, an easy toddler, an easy stage or age, it isn’t you. The same goes for the difficult ages and stages. You are a great sleep trainer until you have a baby that doesn’t sleep. Your child has an amazing vocabulary because you read to her every night, until you have a baby that doesn’t make a sound. You have a healthy baby because you did yoga and drank fortified organic smoothies, until you suddenly have a special needs child. You know exactly what to expect, chapter by chapter, month by month, until you wake up one day and find yourself completely in the dark.

The long discussion before dinner focused on how a mom sleep-trained her baby by 2 months of age. I vividly remember crawling into a hospital crib with my precious baby at that exact same age just to soothe her in the PICU. While I sleep-trained my robust firstborn and took pride in his peaceful slumber, I was still waking up every few hours to nurse my daughter at age 3, and I couldn’t bring myself to wean her because my immune system boosted her struggling one. I realize now that I had the privilege of “sleep-training” my firstborn son as much as I felt like I had some say in teaching him how to walk and talk at an early age — things that my daughter needed ankle braces and years of speech therapy to master. I now understand the big picture and what I missed back then — how valuable every child, every stage, every age, and every difference is because I take nothing for granted and I take credit for very little. I have changed my expectations entirely, and in return, I find an unparalleled sense of gratitude that I wished I could share with all of the moms as I listened to them compare and compete.

Nothing I had read could have prepared me for the journey with a special needs child. More importantly, nothing I had experienced prior to it made me appreciate my children and the value of differences of all kinds in a more profound way. Hanging on my grandma’s favorite weathered-wall plaque are the words, “To understand someone, you must a walk a mile in their moccasins.” I have come to understand that it isn’t just me and my beloved daughter; it’s the mom who miscarried, who hovered in the pediatric ICU, whose child has yet to speak, whose sweet little baby brought them to their knees. It is every mom who knew exactly what to expect and then woke up to the unexpected.

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To the Parents Who Dread 'Those' Meetings About Their Child With Special Needs

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Every day we marvel at the things our son with Down syndrome can do – from climbing the stairs unassisted, to figuring out how to work a smartphone faster than we did! Recently, he’s learned that lions roar, and it’s pretty cute to watch him answer the question “What do lions say?” We proudly share all his new accomplishments with our families and friends, taking to Facebook or Instagram to post video clips or pictures whenever possible and relishing in the fact that our son can do anything he puts his mind to! This doesn’t sound much different from the experiences other new parents have, does it?

But imagine that every six months (or more) you have to sit down with someone, or a team of people, and focus on the skills he hasn’t yet mastered. You have to look at your 2 and a half year old and list the things he cannot do without peppering your answer with “But he tries!” or “He’s almost there” or “He can’t speak more than 40 words, but he can help me load the dishwasher after every meal.” During these meetings, you aren’t supposed to focus on the things he can do, or the skills he’s nearly achieved, or the manners he’s learned.

No. Those meetings are all about focusing on the negatives, on the “deficits” your child has.

You are provided with checklist after checklist of “age appropriate” skills to review and complete. Can your child string three or more words together? Kick the ball forward? Try to run?

Every day you marvel at what he can do. Every day you enjoy hearing him play, and watching him try so hard to jump off a small step. You love hearing his laugh, and it’s fun watching him light up when a big truck or a bus goes by, and wave excitedly at the person behind the wheel. You hold him close, thanking a higher power for choosing you to be this sweet boy’s mom.

But the feelings of pride and joy don’t mean anything on those days. His accomplishments aren’t what those meetings are about.

And it’s heartbreaking.

During those meetings, it’s your job to list the things he can’t do.

He can’t say more than 50 words, spoken or signed.

He can’t jump with two feet.

He can’t use pronouns.

He doesn’t know his colors, or animal sounds, or the difference between big and little.

He doesn’t point out his mom, dad or himself in photographs.

And I just want to scream after each statement “Yet – he can’t do them yet!

But those meetings aren’t about his potential. They aren’t about the fact that he can load the dishwasher, or how he puts his shoes away as soon as he takes them off his feet, or
that he understands English, French and some ASL.

Those meetings are to gain support services or to apply for financial support.  The only way to get that extra help we need is to focus on the deficits. Focus on what he can’t do. Stop seeing the ability.

We are asked to define our child by the things they cannot do in order to get speech therapy, to have PT or OT services come in, or to get funding to help pay for respite care.  We know he needs the extra help; we want him to have speech therapy to help him unlock the vocabulary he’s building quietly when we think he isn’t listening. We need help to teach him feeding, dressing and toileting skills.

Knowing that focusing on the deficits will help us help him doesn’t make those meetings any easier.

So to all the parents who dread those meetings, know we are right there with you. We find those meetings as emotionally and physically draining as you do. We cringe every time we have to say, “he can’t,” or “he doesn’t know how.”

But please know that those meetings don’t define your child, your parenting, or you. And admitting what our children cannot do isn’t admitting defeat. Keep marveling at all your child can do.

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5 Ways Churches Can Support Families with Special Needs

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I’ve spent the majority of my adult life mentally assessing how friendly a church is to those with disabilities. In my early and mid 20’s, I had a career as a direct support professional and house manager for a group home for adults who had developmental disabilities. The majority of the housemates under my care were Christians of various flavors, and so we would make the rounds from church to church every weekend. And every weekend, I found myself either delighted or disgusted with what I witnessed.

Some church leaders and members went above and beyond to love and include my friends. Others were merely apathetic, finding their presence an inconvenient thing to tolerate out of “Christian” charity. But worst of all were the churches who actually turned these individuals away from congregational worship, either subtly or not-so-subtly.

Co-workers knew which local churches fell into the latter category, and many of us had spent time consoling housemates when the people who were supposed to be their brothers and sisters in Christ rejected them due to their disabilities.

I eventually quit my job when my own child, Katherine, was born. Once again, I had to consider what it meant for a church to truly love someone with disabilities, because Katherine was born with several of them. Thankfully, the two churches we’ve been a part of since our daughter’s birth have done a tremendous job loving and serving our special needs daughter and her family.

Here are five ways they have shown their love for us and our daughter.

1. They are consistently praying for us and with us. This seems like an obvious answer, but it’s often the forgotten one. Our family needs prayer daily, and we want our friends to pray with us. We need them to hear us be vulnerable in front of God. We need them to hear us confess our fears and offer praise for Katherine’s milestones and successes. To pray for us and with us is a great way to develop understanding.

2. They are willing to consider their own mistakes and ignorance. I’ve sometimes had to confront my Christian friends on their prejudices. It’s as awkward as you might expect, but it’s something that has to be done if you want your church to embrace diversity and inclusiveness. But there is a lot of resistance to this sometimes.

Once or twice, I’ve asked people not to use “the R-word” in front of my kid, only to be met with rolling eyes and rants about political correctness. It can be disheartening to ask for kindness from other Christians, and receive callousness instead.

However, there have been more encouraging moments than discouraging ones. There have been many times when I’ve spoken to friends in the church about ignorant words or behavior, and witnessed genuine humility. There’s incredible power in the phrase “I didn’t realize how hurtful that was, will you please forgive me?” When our church friends are willing to seek reconciliation and understanding, it sends a message to our family that we are their family. And that it’s worth abandoning their pride for our daughter’s dignity.

3. They are patient with our family. We are not perfect people either. One day, I’m pridefully annoyed with offers of help. The next day, I might be frustrated because I feel like I don’t have enough help. Our daughter’s emotions can change suddenly, and she sometimes becomes frustrated because she can’t communicate well.

My family’s emotions, decisions, finances and schedules are often erratic. The exhaustion, frustration and anxiety we deal with as special needs parents sometimes leads us to lash out. Our church family understands that sometimes, my husband and I are the ones who need forgiveness. And they readily give it. No questions asked.

4. They help us in the practical things, so we can focus on the areas that require more experience. While it’s undoubtedly kind to offer help, there are just some areas where you aren’t going to be able to assist. You probably can’t sit through a two-hour neurology consult for us. You probably don’t have the experience to weigh in on her medication regimen. But you can do a lot of other things to care for us if you want to share the load.

We’ve had several friends from church do our laundry for us when Katherine was overbooked with appointments. Other church members have made us meals when she’s had procedures done. Our church elders have tried to ensure that our church building is physically accessible and safe for those who have disabilities. Helping with the seemingly simple stuff can give us some breathing room and renewed energy for all the things we have to tackle alone.

5. They love our daughter for who she is. My daughter’s identity is not her disability. She is more than cerebral palsy or blindness.  And yet, her disabilities certainly affect her experiences, and shape the way she views and interacts with the world and our church.

So how does a church family respond to such nuanced identity politics? Well, our church doesn’t identify her as “other” and pull away out of fear. Nor does our church merely tolerate the presence of her unique perspective. In our church, our daughter is valued as an image-bearer of God and recognized as a part of the family. They understand that her experiences and points of view are beneficial to the church body, and embrace her fully.

Any church who manages to grasp this aspect of caring for special needs families will not struggle as much with the rest of the details.

Follow this journey on Each Passing Phase.

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