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Ink Slingers Mary S. Series Special Needs Connection

I’m (not enough of) a Special Needs Mom

I’m a “Special Needs Mom”.

That sounds really weird to me. For a couple reasons really, but mainly because I sometimes wonder if I “qualify.”

My son is on the Autism spectrum, but is pretty high functioning (like what they used to separate out as Aspergers). With only a small interaction with him, you may not notice anything too odd about him, though those who spend more time with him can pretty readily tell he’s not typical. He gets some services from the public school district, and both at home and at his school there are some things we do differently to help him. But then I look at some of my friends who are also “Special Needs Moms.”

Sue (names are made up, but these are all people I know and call my friends) has a son who is severely autistic – his needs affect basically every part of the family’s life and decisions, and he will always need a caretaker of some sort. Karen’s daughter has hydrocephalus and at age five has had about 20 surgeries, including some pretty major brain surgeries, and struggles with many things that a typical five year old would do without even thinking. It’s hard to tell what she will and won’t be able to do in her life, but again her needs affect so much of her family’s day-to-day activities and decisions. Maura’s daughter struggles with severe anxiety – many daily activities like walking into the school building, eating anywhere but at home, and such things absolutely terrify her. The whole family does many things every day to help this daughter handle some of the simplest activities, and Maura is constantly looking for ways to ease her daughter’s anxiety and keep it from negatively affecting her other kids too much. And Jane has adopted or is fostering several children, including some with severe medical needs. She has had to become very comfortable with feeding tubes, specialty wheelchairs, and a number of other specialty devices and activities most of us wouldn’t have the first clue how to handle. One of her young sons (I think he was about five) recently passed away due to his medical difficulties.

Me? I have to deal with an occasional meeting with teachers and other folks caring for my son. I have to learn to adjust my discipline and teaching to suit what works best for him, and remind him to do things like responding to a friend who says hi. My other kids sometimes have to wait a couple minutes while we deal with his unusual behavior. Is it difficult? Yes, at times, but I’m sure he’ll be able to be independent as an adult, I don’t deal with much in the way of medical interventions (counseling and such occasionally, but not anything more), and I know his life is not at risk from his special needs.

Calling Sue, Karen, Maura, and Jane Special Needs Moms is a little bit of a “well duh!” Putting myself in the same category of Special Needs Mom almost makes me feel like an impostor, or like a kid dressing up in her mom’s clothes.

On the other hand, in my head I know I shouldn’t compare myself or my kid to others. And on the third hand (lol 🙂 ), I’m not a fan of labeling in general, or at least “embracing” labels as a way of defining yourself. And, I mean, it’s more than a little ridiculous to feel inadequate somehow because you’re not in as tough a situation as someone else. But knowing something and feeling it, whether you use the label or not, are very different matters. And, frankly, labels can be helpful in finding the help and resources you need.

So, am I the only one who feels this way? Do you? Or are you on the other end of it, and wish you weren’t reminded of your family’s special needs so often? How do you deal with it, or think about it??

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Celeste Single Parents Special Needs Connection

Special Needs Parenting, Solo

 
Parenting is hard work for any person, whether you have one, or two or 8 or 12 children. You learn to strategize, categorize needs, make schedules, chore charts, and instill any other number of flow charts so that life can come together with some semblance of normalcy. It’s not different for me, parenting 4 children, more than half with special needs, keep the house running semi-smoothly, running between 4 different schools throughout the school year… solo.
 
Yes. Solo.
 
My answer to that common question of how I do it is simple; I survive on grace. And coffee. I’m not some extraordinary super-mom, and I have no secret recipe. I simply have grace. (And don’t forget the coffee.)
 
Though I lack the partner that I wish I had to help me carry this yolk, I do have a great Advocate that I call on, minute by minute, to help me through the tough stuff, and the daily grind. I would be failing miserably in my motherly vocation without the grace that God showers down on me in every second of the day. He is my help, my sounding board, my advocate, my strength, my confidant, my advisor. I wish I could tell you that I just ring him up and have great back-and-forth conversations about the kids everyday, and/or that He advises me and consoles me when I struggle with something. But it’s not so. I do a lot of waiting on being shown the way, and a lot of trusting. God is definitely teaching me patience. The reality is that I have a lot of advisors and people that I run things by, especially when it comes to things that I feel unqualified to decide about. My kids therapists and special ed teachers are invaluable resources that I call on. I’m not always qualified, but they are. When my children outgrow a particular resource I stay in touch with those people that have come to know us and our circumstances so that I can take advantage of their knowledge and experience. They become my friends. God provides!
 
As a singleton, I struggle with being patient and waiting for the right answers to become apparent. Some days, when I struggle with a pertinent question regarding one of the kids care, I very timidly make a decision with the best of intentions after having educated myself to the best of my ability, through knowledgeable people and research. Someone once told me that I act bravely when I step forward and advocate for the kids in this way. I don’t feel brave. I’ve resigned myself to acting bravely on their behalf. I may go home and cry after a meeting where I had to tell someone that something wasn’t acceptable for my child, but in the moment I put on a brave face because that is what my child needs me to do. Isn’t that what any parent would do? I don’t have any different power or control than any other parent. I do, however, often feel in those moments that I wish with all my being that there was an equally invested heart that I could pass the torch on to. The burdens can often feel greater than whatever strength I might possess, but God has never failed to provide for a moment of relief when I need it.
 
On the subject of relief, as the years have gone on, one thing has become absolutely clear to me. Though my circumstances do not always allow for me to physically go away from my house or my children to rejuvenate, it is still absolutely necessary for me to take moments wherein I can rest and refresh myself. I truly believe that our Lord does not want me to burn out. As a special needs parent that is very easy to do, and very dangerous. As a singleton, it carries some serious consequence. Locking myself in the bathroom for five minutes to read a short homily isn’t indulgence, it’s feeding my soul and my mind. I spend the few extra dollars to buy the nice smelling soap, to enjoy my five minute shower so the shower doesn’t seem like one more chore to fit into my day. (It’s easy to go 3 or 4 days without one when the toddler can’t be left unsupervised for even a second.) I’ll find a new book and keep it in the car to read while I wait in the pick-up lines at schools. These are simple things, and at times it feels indulgent or I’ll have this mental conversation about how “you don’t absolutely need that cup of coffee that someone else is making you and those dollars could go somewhere else”. But you know what…it’s really nice to have someone else make you that cup of coffee. They are truly doing me a huge service. In doing these things for myself, I realize that I am also doing my children a service by teaching them several things. One, that I am deserving of time, respect, gentleness, and refreshment (and not necessarily a drink). And two, that sometimes mom needs to be out of sight for a little bit of time to be able to come back and be the advocate that it is necessary to be.
 
The vocation of caring for special needs children is not lessened in value or dignity because of my singleness. This is something that I struggled with and worried over for quite some time. My children are not illegitimate because I am divorced. They are still loved by God, perhaps in a very special way now. Because I parent without the other parents involvement, at times my children feel abandoned by their  father. It is a heartbreaking thing to say out loud, and I cry as I type this. They have questions, they have struggles. It is a huge sorrow to carry. It is something that we must grow through, pray about daily, and run to our Heavenly Father to console us in those times of utter brokenness in spirit. At times I may feel that it is more than I can carry alone, but the truth is that miracles abound in our life on a daily basis. The understanding and insight that my older children have now is astounding at times. I truly believe that by virtue of the Sacraments, I have been given the graces and ability to carry this vocation adequately as a singleton. And not just by receiving the Sacraments myself! I think that the Lord has mercifully showered down grace upon my children through their baptisms and through the Sacraments that they participate in as well. When my children watch me faithfully approach the Sacraments, and speak of them like they are medicine for my broken spirit, they too come to appreciate and desire the graces that come with participating in them. That’s not to say that it is an easy journey, (have a teenager prepping for Confirmation? You may be able to relate!), but it’s hard to argue with reason and Truth. And Love. As long as I speak and act with love and understanding I think that, and I have been assured that, the Lord will not abandon my children in this burden they carry.
 
Do you know a single parent that is also a special needs parent? Here are a few things that you could do for them that would be of great service to them.
  • Sit with their child or children so that they can go to Confession.
  • Are you going to the store, and live close by your special needs parent-friend? Call them up and offer to pick up something from the store for them since you are already going that way.
  • Have a Mass offered for them. Please do this! There are communities that have enrollment for perpetual Masses.
  • Invite them over for dinner. They will really appreciate not having to cook! (Ask them to bring french bread or something easy.) Or bring them a frozen meal. There doesn’t have to be a special reason. 
  • Ask to come visit them for a few minutes at their home. Often times special needs parents don’t get to leave the house very often to be social. They are often isolated for long periods of time. It is a great service to visit them even for a few minutes. (Maybe you could let them get that shower in uninterrupted!)
  • Ask how their kids are doing. Inquire about their child’s needs. Sometimes that can be overwhelming for us to share about and we tend to give shortened/condensed versions of things to not overwhelm people. We can feel like we’re burdening others with our children’s needs sometimes. But if there is one thing in particular that you already know about their child’s disability or needs, ask about how that is going.
  • Bring them flowers, a new board game, some muffins, a movie and some popcorn… just because!
  • Talk to their child/children. They are people. They have feelings and like to be acknowledged, too.
  • And lastly, pray for them! Pray for parents, pray for the children.
Categories
Communion Faith Formation Guest Posts Parenting Sacraments Special Needs Connection Vocations

Special Needs Mom Reflects: All are Welcome at the Feast

A week after Christmas, after months of preparation, my two youngest children received their First Holy Communion. I had always assumed that while welcome at mass, this particular avenue of grace would always be closed to them because of their disabilities. Jude was born with severe cerebral palsy due to an injury at birth and his older sister, Josie, has profound autism. The actions of a kind nun nearing retirement brought them further into the Church and able to participate in Holy Communion.

It is amazing the things that happen by luck, or more fittingly, by divine providence. We attend a variety of masses due to my job as a night shift nurse. We were lucky enough to attend a mass honoring the 50th anniversary of Sister Judy Jones of the Missionary Servants of the Most Blessed Trinity, an order that was founded at the very parish we attend. It was there that sister met our children and asked a very simple question, “Have they received their First Communion?” When we replied no, her answer was equally simple, “We will need to fix that.” It was there that they started down the road to receiving First Communion.

We were on a time schedule. Sister was due to retire at the end of the year, and return to the motherhouse in Philadelphia. She made our children her top priority in the time she had left in Alabama. While we thought this wasn’t possible due to our children’s inability to participate in “normal” sacramental preparation, we were wrong. Sister had prepared many disabled children for First Holy Communion, allowing them even greater participation in the Mass. Our preparation consisted of a weekly meeting over a period of six months to prepare the children to receive. They learned more about the mass, Josie learned prayers (Jude is non-verbal), and how to receive. 

When the day arrived, it was not a typical First Holy Communion. The Church was beautiful with Christmas decorations, not the typical spring flowers. It also happened during a regular Sunday mass. Many of the congregants had watched our children grow and I am certain that mine were not the only tears of joy shed that morning. When they received, it completed something that I felt was undone, something that made my children “normal.” For my children, it allowed them to truly experience our Lord in Communion, perhaps not an experience either one of them will ever be able to truly verbalize, but one that they both felt. 

The Lord calls all of us to him, even the littlest, the weakest, and the least able because with him we are strong. He calls others to guide the way for them. We are all called to the feast.

by Melanie Miller

Melanie Miller is a cradle Catholic and registered nurse married 29 years to her husband, Daryl, who converted to the faith 22 years ago.  They have seven children, ranging in age from 9 to 28.  They currently live in Georgia but attend mass at St. Patrick’s Catholic Church in Phenix City, Alabama.

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Faith Formation Ink Slingers Mary S. Parenting Special Needs Connection Vocations

Grieving for my special needs child

For a while, it has bugged me when a pregnant woman, when asked if she wanted a boy or girl, responded “I don’t care, as long as it’s healthy.” Because I had seen couples welcome babies who were definitely not “healthy”, but of course they still loved their child with all their hearts. So in my self-righteousness, I looked down on those who answered “as long as it’s healthy”. Until I had been a mother myself for several years. My first two children had both been born healthy and “perfect”, and were even relatively easy babies. But then as my son grew, we saw signs of problems. He had a speech delay, which we found was due to a hearing issue (later corrected with ear tubes), but there were other issues which seemed to point towards something more. Over time, it became clear that he is on the Autism spectrum. He’s pretty high-functioning, so while it is sometimes difficult, our lives are still pretty normal. And for a while, this actually increased my self-righteousness, since I had a child who while physically healthy, was not your typically “perfect, healthy child,” yet of course I loved him! I must be so much better than those people who replied that they only wanted a healthy child.

But then I realized that I was not all sunshine and happiness when thinking about my son. I frequently felt sad, stressed, guilty, worried, frustrated, overwhelmed, and so much more. And somehow humility struck me, because I found myself grieving for the loss of some of what I had imagined for my child. I realized I was sad that he was already having great difficulty learning to read and having trouble with his classmates because of his difficulty in social interactions. And I was sad because I knew those difficulties would continue, and others would come. And I realized without even being aware of it that I had imagined my children would be healthy, normal kids and grow into healthy, normal adults. While I was feeling superior to those who voiced the hope for a healthy child, without realizing it I had simply assumed that my own children would be healthy. And it hurt to give up that assumption, to change my image of what my kids would be as teens and young adults and parents themselves. I had to realize that not only would they all face the typical challenges of life, but my son would also face special challenges. And my husband and I would face special challenges in raising him.

And that kinda sucks.

I don’t want to spend time searching for ways to help him navigate a world that sometimes doesn’t make sense to him. I don’t want to deal with Special Ed providers at his school, or with the additional parent-teacher meetings needed to keep track of where he needs extra help, or with the extra time at home helping him. I don’t like having conversations with him where I have to explain basic social reactions when he just doesn’t understand why his classmates react a certain way. I don’t want to be a “special needs mom,” but I am. I wouldn’t choose any of those things, but I do them because I know he needs them, and I’m his mother. I have friends who deal with much greater issues with their children, and I’m willing to bet they don’t want to be a “special needs mom” either. I think any mother would prefer that her child not have to face the big or small challenges that come with having special needs. A mother naturally wants to make the road smooth and easy for her children, to watch them grow and succeed rather than stumble and struggle.

So I’m sad sometimes. I grieve the loss of the image of a normal, healthy life for my son, and I grieve the fact that his extra needs make my job harder. While I certainly love him no less, part of my mind says “I wish he were healthy,” “I wish we didn’t have to fight to get closer to normal,” “this stuff is a pain in the….uh….rear.” And that’s okay. While I still don’t like it, I don’t judge them so harshly when new parents say “as long as the baby is healthy.” And I don’t come down so hard on myself when I am sad that we have to deal with this. It is a loss. A loss of some of my hopes for my child and myself, a loss of our time and effort and energy, a loss of the ability to share my time and attention more evenly among my children. I’m allowed to grieve for the difficulties my son will face. And so are you.

I’d love to hear how having a child with special needs has impacted your family. Have you grieved the loss it includes, as I have found myself doing? Have you felt guilty about that sadness, as I frequently do? Share your stories in the comments section.

Categories
Celeste Domestic Church Ink Slingers Parenting Special Needs Connection Vocations

Moving as a Special Needs Family

The process of moving a family is a huge undertaking. For a typical family it can be stressful, anxiety inducing, and full of the complexities that come with transferring a family to a new residence. The additional complexities that come with having a special needs child (or several in my case) can make the task quite overwhelming. This is where faith, organizing, and a good support system come in.

Three of my children have special needs and we are facing moving in the very near future. I am grateful that I have some experience under my belt already. Just over two years ago, I moved my little family across the country from North Carolina to California. My oldest was 12, and my youngest was about a year old and still breastfeeding. I drove the kids in the van, and my mom followed behind with our dog and the household goods in a truck. I like to think of it as an adventure. Thankfully, we won’t be repeating that adventure, and I am grateful that everything went so smoothly with some planning and thinking ahead.

Some of the planning begins even before we find the right place to live. Safety and accessibility to resources are essential components, not just enough rooms and square footage.

Location

Location is important for us. I want my kids to be in a safe place, but also to have things easily accessible to them like their schools and other resources. For many families with special needs children living out of town, or far from doctors and specialists, can be a life or death situation. Often a family will move to be certain to have these accessible to their children. Within my own daughter’s class, the parents were conversing just the other day about their choice of neighborhood because of the schools that it would allow their child to go to that give the most comprehensive services for their child’s needs. My initial move from the East Coast to the West Coast was for exactly this reason. Within the special needs community, it is extremely common for this to happen. Being a caregiver can be extremely demanding at times and having the resources available to your child can be essential to the well-being of the family as a whole. So for us it isn’t always just about what house we’ll fit into and can afford, but the location within distance to the resources that are needed. It can be very complex and stressful at times. Having to begin with new doctors, therapists, and specialists is a full-time job when you have more than one child with special needs. In my own situation, I am hoping to keep my children within the same school district so that we don’t have to change schools, services, and start from ground zero.

Education and Services

The complexities that come with children with IEP’s also adds a dimension to moving. My oldest child just had his first IEP meeting for high-school last week, and I’m hoping against hope to be able to keep this particular school within reach. For him, moving and beginning from ground zero after arriving in California was a bit of a traumatic experience. We went through some very difficult emotional and behavioral issues, which resulted in having to slowly integrate him back into a public school setting. It took 6 months. He’s made friends now, is doing very well academically, and has resources and specialists that he knows he can depend on for help when he needs it. As a child gets older, who has intellectual and/or learning disabilities, it doesn’t always get easier to handle change. The child may develop more understanding and hopefully develop better coping skills, but it is a very delicate balance. Introducing new things, or too many changes at once, can be overwhelming. Have you ever experienced a man sized-child meltdown in public? It is stressful for everyone involved. If I can avoid upsetting the delicate balance in the household by keeping things as steady and dependable as possible, that is what we aim for.

Preparation

I like to prepare my kids as much as is possible for all big events. Moving is no different. We talk about the move, when it will happen, and what will happen. This is a practical part of our daily life and working on executive functioning skills. These are the skills that you and I use everyday to function in our home, school, and the community. But we practice and prepare purposefully to be ready for things. I’ll give them a general time frame, and make a point of being as open with them as possible, and appropriate, for their age. No one likes things being sprung on them, especially something big like a move.

Home Accessibility and Safety

Depending on what your child’s disability is, you will have to consider aspects about the housing that you are moving into. Is it going to be accessible and safe for my child/children? What precautions do I need to take ahead of time to make it safe? I have two children that are escape artists and bolt out open doors. Do I need to install extra locks on doors? Are there doorways, or stairwells that will need gates to keep someone in a safe area? Do we need locks on windows and cupboards? Door knobs that need locks installed or to be replaced altogether to prevent escaping? If you have a child with a wheel chair, can a ramp be installed if you are not at ground level? These are just a few examples of the practical things that need to be considered for a move.

Support System

Having a good support system and trusting that God will be with you through it all are the essentials. You can’t control every aspect of a move, and what may unexpectedly happen. I’ve learned that first hand, things happen that can’t be helped. Having friends or family to lean on is great, even if you need someone just to talk to and lean on. As special needs parents, we know that having someone in a similar situation can be essential to saving our sanity at times. Parenting kids with special needs can sometimes be isolating and lonely. Moving and still caring for a child or children with special needs adds a dimension that is very complex to something that is already a stressful situation. If you don’t have support, I would suggest searching out support in the place where you hope to relocate to. Don’t be afraid to ask for prayer over your situation, as most special needs families that I’ve met have great faith and are wonderful prayer warriors. Sometimes practical help, like having more people around to move things is not what you need, but moral and spiritual support is. Lean on your friends for this.

Trust in God

God knows and sees in our situation and knows our needs even more than we do ourselves. Keeping this in mind, we can go to Him when we feel uncertain, stressed out, angry, or whatever the emotion may be. We do our best, and we need to leave to Him the rest. If there is anything I’ve learned in the last few moves that we’ve made, it’s that sometimes things don’t go as planned (or even close to it), but they do always work out somehow for our good.

Lord, we place our upcoming transitions in your hands! St. Joseph, pray for us!