A Window View

I’ve asked another mom to write a guest post on what it’s like to parent a child with special needs. My friend Alicia has a son in the same school as Jesse, and we met at the beginning of the year. She has shown me the ropes, as it were, for support groups, community meetings on special needs, events, and overall made me feel welcome in a new school environment.

We’re both parents of children with special needs but it looks different for each of us because no two diagnosis are the same. My hope is to facilitate more stories like hers from other parents since this is a community that largely goes unnoticed. Maybe because someone doesn’t know what to say or how to help, or afraid they’ll say the wrong thing. Reading part of someone else’s story can help us relate to one another a little better. Maybe you or someone you know cares for a special needs child or adult. It’s helpful to know you aren’t alone and that others share similar stories.

It can be a sensitive topic- but more than that I think the special needs community appreciates compassion. Compassion to not feel like we or our children are less than, compassion to see us when it’s easier to avoid the uncomfortable. Here is a window view of what Alicia’s daily life is like with her son William.

***

Guest post by Alicia Lynch

My name is Alicia and I’m a mom to three wonderful kids.  My oldest William has Autism, Attention Deficit Hyperactivity Disorder (ADHD) and Intellectual Disability.  He is 10.  This is one of my stories about him.  I have two other children Wyatt who is 7, and Annaliese who is 3.

Grooming is difficult for lots of children with Autism and other sensory disorders.  But let me tell you, it’s a crazy task in our house.  Back when William was a baby he hated his nails trimmed.  Once I accidentally cut the tip of his finger and it bled.  My mom guilt sat in!  Is this why he hates his nails trimmed or is it his Autism? Or something else? Then you discover a ripped toenail and wonder when did that happen?  Is that why he was upset?

IMG_4236IMG_4183FullSizeRender

 

When William was about 5, we would have to put on his favorite television show, while my husband held him and I trimmed his nails, or vice versa.  We had to be quick.  He hated it!  But here we are today, at 10.  And he is finally tolerating having his nails trimmed.  Does he like it? No. Tolerate it? Yes.  And that’s a WIN!

I write this to give others hope. Your child with sensory issues might deal with a simple grooming task at 10, 12, or hey, your child might handle it at 5.  But there’s light at the end of this tunnel for us.  When he was 3, I never imagined that we would be where we are now.  Mamas, take a deep breath and keep on going.  Because I swear to you, that was just yesterday.  Now, haircuts, that’s a completely different story!

To those reading this who do not have children with special needs, I ask that you be kind and patient with us parents of special needs children.  It’s simple things like trimming a child’s nails that will put you over the edge some days.  It’s these little things that are not difficult but they add up.  And special needs parenting is stressful enough.

 

Advertisements

Upside Down Blessings

Every Wednesday afternoon I sit in a waiting room for close to an hour while Jesse has occupational therapy. There’s a bulletin board in the front office with their business public Wi-fi password, upcoming events, and articles related to children with special needs. One article in particular caught my eye since it was an interview from two parents with a special needs child. In it, they shared, “We grieve the dreams lost, but not our child”. I remember wanting to shout “Yes!” after reading that small but powerful sentence. Their words echoed something I had hidden in my heart for years but couldn’t even articulate without it coming off like self-pity.

FullSizeRender-3

The truth is, no one wishes for a baby with special needs. We aren’t wired to think that way. So when the diagnosis does come, whether in utero or well into toddler years, there IS a grieving process over future hopes that will never materialize.

But we’ve joined a club we didn’t sign up for and we’re here- so now what? Does it change the way I love my son? Of course not. It just means there will be a plan B that isn’t laid out yet, in which there is little control or foreknowledge. I know that sounds very much like parenting a typical child, but I’m convinced there is more of a blueprint for raising children without a disability than with one. It’s not to say that parenting in general isn’t soul-draining- it is.

Yet the future for most children is that they will one day tie their own shoes, converse in complete sentences so that others understand them, and become independent fully functioning adults in society. There is a broad but knowable path laid out here. Yet the spectrum for autism, OCD, ADHD, or physical handicap is even bigger. So no two special needs persons are alike in their diagnosis which makes parenting feel more like a desert wilderness. It’s harder to swap “what did you do when she was 3 and this happened…” stories to learn from.

I’d like to say that 7 years into this I never get sad. But just as the parents in the article said, you do grieve over broken dreams… and the daily struggles too. And yet, Jesse is a gift I can’t imagine living without. He teaches me how to see people, to not be so self-conscious and to love unconditionally.

FullSizeRender-5

FullSizeRender-4

My son is what I like to call, an upside-down blessing. God often teaches us through suffering and disappointment. This is part of the upside-down kingdom effect. I lean more into Him, cry out when I don’t understand, in the times I’m flailing because my faith is shaken.

It stretches my trust in God, the Sovereign Creator. I’ve even lately begun to see secondary infertility in a new light, because maybe my ministry is to take care of the one. Even as he gets older his dependence on me hasn’t changed- so maybe, just maybe he needs all of me right now and God knows that.

FullSizeRender-6

In the end, this piece of life and how we respond can be for God’s glory and our good. The growing pains are real, and will probably never go away this side of heaven. For me and my husband our Christian faith keeps us going. We believe that one day our son’s mind and body won’t be disabled anymore. One day he will be fully restored as will we. For the Christ-follower, there is always hope. Because hope becomes sight when we see Jesus face to face; and all the dreams I thought I wanted will pale in comparison to the very thing my heart always hungered for.

 

Grace upon grace,

April

 

 

Life-giving community

Hi patient readers!

This summer I took some time off to focus on Jesse while he was out of school. Honestly I didn’t write much because the past few months were mentally and physically taxing. It was hard but rewarding because my goal was to invest in my son’s heart while we had uninterrupted days. Motherhood ain’t easy and part of that is because of how much it requires to give of ourselves- daily- hourly- sometimes minute to minute.

But the sweetness comes when praise songs we’ve been listening to over and over start to bubble up out of his little voice. It’s when the things I have been teaching him for so long and start to feel pointless finally click. I saw his character form more over the summer and mine too. His speech has blossomed and he’s testing the waters of independence more. We still have a long way to go, but that’s okay.

IMG_3779IMG_3785

As a mom to a child with autism I’m learning that I don’t need to assume his limits. Meaning, it just might take more time, but he’ll achieve milestones eventually. Like learning to ride a bike has been a challenge. Jason and I got him a bike (with training wheels) for Christmas. For the longest time he only wanted to sit on it. And he was even timid about that initially. Then over the summer he began to pull his bike out out more. He would sit on the bike and let me gently push him from behind as he learned to steer.

Lately he has shown interest in working the petals but we aren’t there yet. And that’s just fine because I believe in him to get there one day. His confidence in his own abilities has to click first.

Pouring into Jesse’s heart as well as working on developmental skills has been the main agenda since the beginning of summer. I think it’s like this for all mothers really; there isn’t a set time to start and stop such a huge task. There are seasons I’m focused more on these things and there are times when others (church leaders, teachers, therapists, family, friends) help take the driver’s seat. It really does take a village to raise children, special needs or not. I always seem to be re-learning this because my job feels isolating, and can be if I let it. But God didn’t create us to live independently from each other. We need helpers in the community and the body of Christ to come along side of us.

IMG_3833IMG_2998

Jesse is seven. It seems to be going by so fast on one hand, while daily living can feel monotonous. And yet I know these are the formative years I don’t want to waste. Staying faithful is the key. I’m grateful for our invaluable time together over the summer, but the school year will be good too. There is more time for “his village” to teach him, allowing me to still be a person and re-charge, hopefully to be an even better (nicer?) mom. May we learn that it is not good to parent alone, and receive help from others. Let us bless those around us, remembering that leaning on one another isn’t weakness but life-giving.

 

Grace upon grace,

April

If you are looking for an online community to help you navigate parenting a special needs child this is an encouraging space to go to: Anchored Souls: Real Hope for Real Life

 

What I Learned: Fall Edition

When I remember, I try to participate in a community post organized by Emily Freeman, titled What We Learned. It’s a good way to press pause on this season before the next one rolls around. The topics can be about anything really. This autumnal post ranges from a food I rediscovered, encouragement for parents with a special needs child, learning to do hard things, and keeping it simple.

IMG_2298

Head on over to see more seasonal posts from others and what they are learning too. I promise you won’t be disappointed.

Here are 5 things I learned this fall:

 

  1.  I like apples again and apparently so does my child.

I don’t know when I stopped eating apples, but it’s been a few years I’m sure (unless it happened to be covered in caramel- duh). But I saw a Pioneer Woman recipe to make an apple tart so I marched myself to the grocery store and bought a bag of Honey crisp apples. I never got around to actually making the recipe because Jesse and I accidentally devoured most of them.

IMG_2414

I had no idea he liked apples. He didn’t last year, but somewhere in between he took a fancy to them. He prefers them just plain, but I like apples with peanut butter, or fruit dip or salt or even in a turkey sandwich! Still planning to make that recipe, but who knew it would evolve into more than an apple tart?

 

  1.  Listening to another mom talk about her child with autism made me cry.

I listened to a podcast interview from a mom who has a young adult autistic son. It was very helpful to hear her perspective, since I’m more on the front end of the journey. Terri Conlin shares her experience in her son’s diagnosis at an early age, dealing with behavioral issues, learning obstacles, as well as how siblings fit into the mix.

Her feelings match my own. I found myself blinking back tears because even though the autism spectrum is broad, the emotional rollercoaster is very much the same. She helped me remember that I am not alone in this. Raising a special needs child can be a maddening enigma, but it doesn’t have to be lonely.

You can find Terri’s interview on the God Centered Mom Podcast . She also writes lovely words on her blog www.whitepitchers.com. I hope her message encourages you or someone you know with a child on the autism spectrum.

 

  1.  Running is a great stress reliever.

This fall I started running consistently in order to prepare for two 5K races. There is something intoxicatingly free about running outside. As the weather cooled down I tied up my shoelaces to do just that. I’m not very fast, but I can run distance with enough preparation. Just to finish the first race was my goal. The second race happened this past week and I ran a personal best in my running time.

 

After a bizarre collapse and my heart going into atrial fibrillation last fall, I silently thanked God for allowing me the privilege to run again- to have a healthy body. I don’t take it for granted at all. It showed me that with God’s grace, I could discipline myself to do hard things – like running a race, finishing, and running well.

 

 4. I don’t love Daylight Savings Time.

I don’t know what important person came up with the idea to move the clocks in the fall/winter so we have LESS daylight, but I am not a fan. It gets dark by 4pm and I’m ready to crawl into my pajamas by 6pm because it feels so much later than what it actually is. Would it be so bad to do away with DST altogether?

 

5. Keep It Simple Sweetie (K.I.S.S.) is more than just an acronym.

If the holiday season stresses you out this is a saying to practice. As I started to get the Christmas decorations out this year, a familiar cloud of anxiety loomed overhead. Up until now I have put up TWO Christmas trees (because I’m a crazy person) and crammed every single decoration we own in whatever white space was left.

IMG_2446

I’m not a fan of clutter or excess, so this was the exact opposite of what I find relaxing and enjoyable. Then it hit me like a bolt of lightning. I’m a grown up. This is my house. There aren’t Christmas police that say I have to deck the halls to the brim of losing my mind.

So this year I put up ONE tree and half of the decorations. I have to say that I absolutely love it. It won’t be a bear to take down after the New Year and my family’s everyday clutter is still welcome.

 

What are ways you keep this season of Advent? Are there hard things you have to do or want to do but haven’t yet? Maybe you listened to or read something encouraging you can pass along to others. Or perhaps you too tried a new food or rediscovered an old favorite. I hope you enjoyed fall as much as I did. I was a little surprised by how brilliant the colors were in Alabama! That’s always the best I think, to be surprised by beauty and count it as a blessing.

 

 

Grace upon grace,

April

For Holland

When Jesse was not even a year old I was trying to wrap my brain around words like “developmental delay”, “autism”, and “hypotonia”. “It wasn’t supposed to be like this,” I remember thinking. But you know what? In a lot of ways I’m the privileged one with an incredible gift. I read a sweet poem then that summed up a lot of the emotions swirling inside my heart. God has used my special needs son to teach me a thing or two. He is my Holland. Although hard, I’m enjoying this journey, learning about this space I never thought I’d be in. There is beauty here, and grace upon grace when you take time to see and understand someone else’s world. Here is the poem, ‘Welcome to Holland’ that I read a few years ago. Whenever I read it, my perspective shifts a little, allowing gratitude to grow as I take a deep breath, and persevere.

IMG_2162IMG_2206

 

Welcome to Holland

by Emily Perl Kingsley (1987)

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

 

Grace upon grace,

April

 

 

 

 

 

A Support System for Special Needs Families

I can’t imagine what life must have been like 50 years ago, or even 20 years ago, when autism was deeply misunderstood or virtually unknown. Did the parents feel isolated in communities simply because their child did not fit the mold? Some were accused of not loving their children enough, termed as Refrigerator Mother Theory, which has now been debunked as complete nonsense.

Temple Grandin, a well-known autism advocate and also on the autism spectrum, remembers this first hand. Her mother was told she must be too cold toward Temple, to explain her irrational behavior. This was the conclusion of a medical professional in the 1950s! Other parents who felt hopeless sent their children to mental institutions where they lived out the rest of their days. I don’t think it was because they didn’t love their children, but many had few options and lacked community support.

IMG_1306FullSizeRender

Today is vastly different from a time not too long ago, and for that I am grateful. Unfortunately it can still be a struggle for parents with special needs children to relate or share with those living outside their world. Things get lost in translation. It can sometimes feel like an alternate universe filled with IEP meetings, therapy appointments, medicine, natural supplements, working with educators and doctors to make sure your child receives exactly what he needs. I get excited when Jesse sleeps through the night. We celebrate little milestone achievements, like putting two words together, where some might take that for granted especially at age 6.

The “special needs” jargon sounds foreign to someone not in your shoes. Not to mention the emotional developmental delay for most on the autism spectrum. An outsider might conclude your child is “behaving badly” and “lacks necessary discipline”. It’s true they may act differently than their typical peers with public meltdowns, lack of social awareness, or stimming behaviors just to name a few. However, we work toward good manners and accomplishing life skills, but it may take our kids longer to get there.

lightstock_347701_download_medium_april_box_

Even though family and friends rally around to offer support, a missing piece of the puzzle is found in support groups, organizations, or families on a similar journey. Our stories won’t look exactly the same because no two diagnoses are alike, but there will be an unspoken understanding. And thanks to the Internet, families who live in rural areas can still connect with others who feel isolated themselves.

You don’t have to do this alone. Sometimes we go through trials to comfort another weary heart on a path we’ve walked a little further down. I still can’t fully express my life to someone without a special needs child, and that’s okay. Can it be lonely and frustrating at times? Yes. But then I have a conversation with a mom in the same boat as me. We share a bond. I have met amazing parents who relentlessly advocate for their children. They remind me what we all should do- be a voice for the voiceless. This applies to so much more than the autism community.

FullSizeRender-2

Most of us desire to be understood, to form a connection with someone we can identify with – to be seen and known. When we go through difficult times, isolation typically follows close behind. Extending kindness in the form of a hug, a smile, a prayer or simply your presence can do wonders for a hurting soul. The one thing we can offer each other is grace; Grace to practice patience and compassion. May we live each day with hearts open to the needs of others and may we receive the same kindness.

 

Grace upon grace,

April

Conversation Starters

A boy in Jesse’s class invited him to a birthday party recently. I bought a gift and marked the time/date on my phone calendar. The day of the party we arrived to find a few of his classmates in attendance, which I silently felt relieved that we would know at least a couple of the other party guests. Jesse immediately ran to a girl in his class, who is Hispanic. Like him, she is also autistic with low verbal skills. I had never met her parents before since she rides the bus. Other parents who pick up their children after school usually congregate outside the building under an awning. After almost a year, I became acquainted with a few of them.

I walked up to introduce myself to the girl’s parents and was surprised that they knew very little English. In fact, the mother could say maybe five words in English, leaving her husband to do most of the interpreting which was shaky at best. All I could think about was how this couple must have a hundred questions related to their daughter’s school. I could not imagine how lonely it must feel to live in a foreign country, not knowing the language, while navigating/advocating their child’s special needs education!

We attempted a couple of times to talk but the few Spanish classes I had in high school and college completely evaporated from my brain. Knowing how to count to 20 in Spanish or recite the months of the year was not very helpful in the moment. I wanted to communicate with the mother and by the expression on her face I think she did too. She showed me a picture of their other child and I smiled back. We were reduced to facial expressions and pictures. My heart hurt for her and their family.

lightstock_353593_download_medium_april_box_

Then it occurred to me that Jesse might feel isolated in a similar way. I have wanted so desperately to communicate with him that it is easy to forget how he must feel too. A book I just read from an autistic boy’s perspective called The Reason I Jump by Naoki Higashida gave me a little more insight and sympathy on this. At thirteen, Naoki transcribed in Q&A form using an alphabet grid with the help of his mother and teacher. The book was later translated into English and has become a national bestseller. I definitely don’t agree with his New Age beliefs sprinkled throughout the pages but the core idea I took away from reading it was that we sometimes limit those who aren’t just like us. Whether it is a language barrier, intellectual, or physical, we often view them as less than the rest of us. Instead of learning what life is like in someone else’s shoes we are quick to treat the disabled or disadvantaged with less respect than someone we can relate to.

lightstock_347701_download_medium_april_box_

I still do this on occasion to Jesse when I struggle to communicate with him or when he can’t calm down or because bath/bedtime makes him super hyper and giggly. The underlying fact is, when I don’t understand his speech or behavior I’m tempted to give up because we aren’t speaking the same language. It can be exhausting and frustrating. Yet I wonder how many times people with Autism or any other barrier are quickly dismissed because the ability to communicate easily is absent. We assume that there isn’t another way or that the case is hopeless. Reading this book gave me a different perspective, and for the first time, hope. Just because Jesse can’t speak in complete sentences like other children his age doesn’t mean he lacks intelligence or is less of a person. Naoki says,

 

“One of the biggest misunderstandings you have about us is your belief that our feelings aren’t us subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or meltdown.” (p. 109)

 IMG_0778IMG_0861IMG_0801

I imagine it might be like someone in a coma who can’t respond verbally or physically but can hear everything going on around him perfectly. His senses are a little thrown off, but mentally the coma patient can comprehend his auditory surroundings. Often doctors, relatives, and visitors talk over the patient as if he isn’t even there.

I’m learning to slow down and intentionally communicate with Jesse – mostly to understand him but also to treat him like I would anyone else without a disability. He’s only six so there will still be wisdom needed (and grace) for training and discipline because I often don’t know exactly what his level of comprehension is. But I don’t want to limit his abilities either. Sometimes that means pushing him a little, to gain confidence. Other moments are more grace-filled and tender, realizing he doesn’t have that specific skill-set yet. But it’s a start in the right direction. Conversation can happen in many forms, not just verbally. For us it looks like a smattering of sign language, spelling words out, hand gestures, pictures and one to two word phrases. We get by. And I am learning that I can’t put him in a box, because he always surprises me by refusing to stay in the mold that society has placed on him.

 

 

Grace upon grace,

April