Tag: super moms

6 Dos & Don’ts After Recognizing Your Child is Struggling & Receives a Special Needs Diagnosis

Your child’s been struggling and you’ve seen the signs, hoping that maybe your fears are wrong. You’re doing everything you can to help him and searching out resources. Maybe you are just recognizing the concerning signs or maybe you have just received an official diagnosis or maybe you’re in the middle of a long search, trying to find answers about why your child is struggling. Your emotions are intense and raw and tears are always close to the surface. The reality of your demands in caring for your child and the emotions that come along with that are overwhelming. Where do you start?

After over 15 years of working with children and adults with a wide variety of disabilities as an occupational therapist and with input from some wise and amazing parents of children with different special needs, I’d like to share 6 dos and don’ts to keep in mind while on your journey of parenting a child with special needs. The child you love is counting on you. You can do this!

1. Do educate yourself from reliable sources.
    Don’t believe that anyone has a crystal ball to predict what your child will do or become.

“Education [has] led to less frustration for me. I learned my daughter was having a hard time, not giving me a hard time. Talking to other parents helped me feel less alone and that I wasn’t crazy,” said one mother of a daughter with Sensory Processing Disorder. She also recommends finding support groups in physical locations or online.

Another mom of a son with Autism says, “Understanding why [he] has certain difficult behaviors has made all the difference in the world as I try to cope with them. [He] does a kabillion things that drive me BONKERS…, but when I started learning about the reasons why [he] might be acting in these ways and the science behind it, suddenly it was more fascinating to me than it was annoying.”

Education helps you understand how to help and support and accommodate for your child. You will learn what can be expected and what can’t in different areas. You learn how to interact, how to create the best environments, what services, therapies, treatments, products and equipment may help. Parents who are always seeking out education will find the newest research and innovations on their child’s condition.

Seek out reliable sources and recognize not all resources are trustworthy. Ask doctors, therapists, teachers, and other special needs parents who are familiar with your child’s concerns about good resources. Internet searches will help you find many, but be ready to sift through them to find good and dependable sources and be emotionally prepared to deal with the worst-case scenarios you will find. One mom was given a diagnosis while her micropremie baby (born weighing less than 1 pound, 12 ounces or before 26 weeks gestation) was in the NICU (neonatal intensive care unit). “The doctor had given me lots of information, which I only remembered part of what he was saying [because my] emotions started kicking in. So I googled it… BAD idea… which made my anxiety even worse. Google is great, but it’s always [the] worst-case scenarios.”

Parents always want to know what to expect in the future. Doctors, professionals, experts and other resources want to give realistic expectations. But, no one has a crystal ball for what to expect for your child. Use your child’s prognosis as a guide, not a determination of a final outcome. Sometimes a child has better outcomes than expected and sometimes there are more complications than expected. Take it day by day and do your best with what you’ve learned.

2. Do create, maintain, strengthen and use your support system of family and friends.
    Don’t feel guilty for taking time to care for yourself and other members of your family.

A mother, whose child has received multiple diagnoses over several years, has had to repeatedly rely on her personal support system. After his most recent Autism diagnosis, she said, “I had every emotion you could think [of]. That’s when I really had to rely on family and of course, [my partner] the most! Having that support so you’re not in it alone makes a world of difference!!!”

Parents of children with special needs must learn to accept and ask for help from family and friends. Keep your personal relationships strong. Take care of yourself. Take care of your families. Remember that a loving and healthy home, family and caregivers are most important for your child. Never feel guilty for prioritizing that over offering every opportunity, service or experience available for your child with special needs. Find the right balance for your family.

“I can’t try every new therapy and every new medication I read about. I can’t be twenty-two places at the same time. I can’t neglect myself and those I love to care for my son. [He] is not the only member of this family, and I have to remind myself often that we cannot let everything revolve around him all the time,” says the mom of a child with Autism.

3. Do find and create a team of professionals, specialists and experts in the area of your child’s concern.
    Don’t exclude yourself from the team of experts.

Search out a team that you feel comfortable with and will listen to you. It’s OK to find a different doctor, therapist, school, etc. that you feel works well with you and your child. But remember, perfection is very hard to find, so settle for a good fit. You most likely will need professionals in the medical community, at school, and in the community. Advocate for your child by making allies, not enemies. Find ways to work together with your team, not fighting against them.

Write down your questions and concerns. Bring them to appointments and meetings. Ask questions and seek out information and resources from your team. Write down notes or ask for handouts and copies because you’ll need to remember and refer to that information again. Follow through on important recommendations from your team.

Remember that YOU are THE expert on your child. Don’t forget the importance of your input! No one knows your child like you do. During her first meeting with her son’s school, one mom realized, “Maybe I did know a thing or two that these experts didn’t. After all, they didn’t know that [he] needs help blocking out environmental stimulation before he can focus on a task, or that he will never, ever respond to a loud voice. They didn’t know that music is always the best way to calm him or that he will move heaven and earth for Nacho Cheese Doritos.”

Realize that you will be unofficially appointed as team manager and communications specialist between all team members. Take this job seriously. Learn to gather, organize and share important information from the doctors, to the therapists, to your child’s teachers and anyone else.

4. Do create a realistic perspective of your child’s abilities.
    Don’t let your child’s struggles or diagnosis become their identity.

Children with special needs will be different from their peers. After educating yourself and consulting with your team of experts, begin to create realistic expectations for your child. Her condition may always create significant differences from others for the rest of her life. An insightful mother realized that she needed to be mindful of the way she talked to her daughter about her struggles. “I knew that how I framed [her difficulties] would be how she would frame it. She wasn’t bad or broken, her brain just had a different operating system, like computers. How I spoke to her about it would become her inner voice.”

Your child’s condition or diagnosis will absolutely define who they become, but don’t let that be the only defining aspect of their identity. I’ve met nonverbal children who are wheelchair-bound that can brighten the entire mood in a roomful of people with one smile. I’ve met children who haven’t learned to make friends with their classmates, but can explain in detail about differences in a large range of dinosaur species. A little friend in my neighborhood struggles to sit still and listen to teachers, but she has no reservations in calling any person her friend and holding their hand as they walk together.

One mom tells, “[My daughter] still occasionally says, ‘I hate all my issues!’ but I often remind her that although she has a few struggles, she’s so much more than that. She’ll eventually learn coping skills to deal with her [condition], but she’s already mastered things that are really important in life like kindness, hard work, enthusiasm for learning, and compassion.”

5. Do expect your child to achieve.
    Don’t forget to celebrate even the smallest of achievements!

“Learning does not come as easily for [my son], and my tendency is to swoop in and make things easier for him, but the only way [he] is ever going to master a skill is if I don’t keep doing it for him. I firmly believe that EVERY child is capable of learning and growth, but we’ve got to stop making excuses for them. Have realistic expectations, but make sure you have expectations,” says one mom. Yes! Progress is possible with hard work. Give your child the opportunity to work hard with the right expectations and support. Your team can help you and your child prioritize and set realistic goals to strive for.

Celebrate even the smallest of achievements! “We celebrate taking one tiny bite of meat or the fact that he’ll not lose his mind over something on his hands… We celebrate all the small things that are an everyday normal to some.” Involve those who know your child well in those celebrations. Not everyone will recognize what big achievements these small steps really are, so share them with your support systems and your child’s team.

6. Do live in the moment.
    Don’t forget to laugh!

A wise mother of a daughter with Cerebral Palsy says, “Live in the moment—good or bad—and [don’t] let the future dominate your thoughts. Obviously, make necessary plans, etc., but don’t let worry about future hurdles or joy about imagined future success take up much of your time. It has taken me several years, but I have learned that by living in each moment of each day, I can enjoy the surprising pleasures of this crazy adventure without borrowing trouble from my future self.”

Another mom who often shares funny stories of her son with Autism says, “Humor has saved my life. Laughter changes everything when you find yourself in a high-stress environment, and it has been my saving grace. Cultivate the ability to find humor in the unexpected, and your life will be so much easier!” (I’ve shared many thoughts from this mom, who recently wrote a similar article about receiving her son’s diagnosis of Autism on my blog here.)

Yes, this journey of parenting a special needs child will be exhausting, overwhelming and full of sadness and tears. But, make plenty of room for joy and laughter and fulfillment with your child! Again, I remind you… The child you love is counting on you! You can do this!

 

See Tera talk about what to do when your child gets a special needs diagnosis with FOX 13 The Place here.

Autism: Now What? Six Things I Wish I had Known When My Son was First Diagnosed with Autism

By Katie Wahlquist

“Probability of Autism Spectrum Disorder: extremely likely. Level: very severe.” Those were the words that jumped off the paper when I was handed the testing results of my then-two-year-old son Adam’s visit with the pediatric psychologist. Was I surprised? Not even a little bit. Adam was born almost three months early, so we were always operating on a different time schedule when it came to developmental milestones, but when his second birthday came and went without so much as an attempt at speech, not to mention his lack of eye contact, unusual behaviors that could not be written off as “the terrible twos,” and his extreme obsessive tendencies, it was pretty clear that we were dealing with something more than a developmental delay. So was I surprised? Of course not. But was I ready for that diagnosis? Of course not!

I didn’t realize it then, but that was my first in what was soon to be many lessons on parenting a special needs child: my life was now all about contrasts. Like Charles Dickens wrote, “It was the best of the times, it was the worst of times,” that reality was now my everyday life! It’s frustration and joy and fatigue and elation and heartache and love and annoyance and humility and despair and hope and guilt…all at the same time and all before 10:00 in the morning!

Adam’s twelve years old now, and this journey just keeps throwing new curve balls my way. Adam still hasn’t spoken a single word, he’s still not potty-trained, and his behaviors are overwhelming to deal with on a good day, but I have learned a few basic principles over the past ten years that have helped me to stay positive and move forward with joy. Please note that in no way do I consider myself to be a superior parent to any other parent. I cringe when people say things to me like, “Oh, you must be such a special person to have been blessed with such a special child.” I know that these comments are almost always given with love, but I don’t think there’s some special place in heaven reserved only for special needs parents. These truths apply to ALL parents, whether you have a special needs child in your life or not. Also, I want to stress that I am not a professional therapist or medical practitioner; I’m just a mom with a pretty amazing kid.
Which brings me to my first point…

1. You are the expert. Period. Now, don’t get me wrong: raising and caring for Adam is a team effort. We love the teachers, doctors, and therapists we work with. They have become part of our family, and I believe very strongly that becoming allies instead of enemies with the people who are treating and caring for your child is CRUCIAL to your child’s success. Adam’s teachers and therapists love him, and I know that their goals and my goals for Adam are the same, but at the end of the day, no one knows your child like you do. No one. And don’t doubt it. I remember walking into my first IEP meeting (to create a specialized education plan for his school), being surrounded by people who (I thought) knew everything there was to know about Autism (spoiler alert: no one does). I listened to their ideas and suggestions in awe, watched as they started writing down goals and the methods they would use to achieve them. I remember thinking that I really didn’t need to be there, it was just a formality. And then, one of those wonderful teachers looked right at me and said, “What do you think would work, Mom?” They wanted my opinion? Wow! All of a sudden, I realized that I had the power (and responsibility) to shape what Adam’s education was going to look like, and maybe I did know a thing or two that these experts didn’t. After all, they didn’t know that Adam needs help blocking out environmental stimulation before he can focus on a task, or that he will never, ever respond to a loud voice. They didn’t know that music is always the best way to calm him or that he will move heaven and earth for Nacho Cheese Doritos.

(By the way, this same principle applies to other areas of your child’s care as well. I could tell you a really sad story about how Adam broke his jaw last year because he was obsessively grinding his teeth together and we didn’t know about it for two weeks because I didn’t trust my gut feeling that something was wrong with his mouth, more than I trusted the multiple doctors who could not find anything wrong with Adam during those two weeks. I could tell you that story, but I won’t. *cough cough*)

So listen to your team of experts; love them, show your appreciation to them, be open to their suggestions, come up with a plan together. But understand that YOU get to have the final say when it comes to your child.

2. Educate yourself like crazy! Now that we’ve established that parents are the experts, go out of your way to become one. Understanding why Adam has certain difficult behaviors has made all the difference in the world as I try to cope with them. Adam does a kabillion things that drive me BONKERS (like smelling every person we meet, crawling into the tiniest spaces and refusing to come out, licking the walls of every single room in our house, freaking out when he sees people wearing socks, etc.), but when I started learning about the reasons why Adam might be acting in these ways and the science behind it, suddenly it was more fascinating to me than it was annoying. I’m also better able to make informed decisions when I understand what’s happening, especially if I combine my knowledge with my gut-feelings (see point number one). Do I screw up those decisions? Oh yeah, all the time. It’s going to happen, and happen a lot, but when I’m putting in the work and trying my best, I have much less guilt when it does.

A NOTE ABOUT EDUCATING YOURSELF: This may come as a shock to you, but not everything you read or hear is true. Misinformation is rampant in the special needs world, so make sure that you are looking to trusted resources and professionals and not letting yourself get caught up in promises, claims, or therapies that will accomplish nothing but feed you a lot of false hope. Do your homework and know what is legit and what is not.

3. Chill out. Guess what, super mom? You’re not “Supermom” (See what I did there?). Let’s just get over that right now. Being a parent is hard work, and when you throw in the stress of caring for a child with a disability, it’s downright overwhelming. You absolutely cannot do it all, and that’s OK. In my perfect world, I would sit in my spotless house on the freshly vacuumed carpet with Adam and spend 4 hours every day working on communication skills on his iPad. We would build an impressive core vocabulary, all while dinner (gluten-free, of course) cooked on the stove. In reality, I spend those four hours picking up the trail of Cheerios Adam leaves all over the house, while trying to figure out what I can get him to eat before giving up and handing him a bag of Cheetos. And that’s OK. I can’t try every new therapy and every new medication I read about. I can’t be twenty-two places at the same time. I can’t neglect myself and those I love to care for my son. Adam is not the only member of this family, and I have to remind myself often that we cannot let everything revolve around him all the time. That might mean that I’m not going to enroll him in the amazing charter school in the next county, because I have a daughter who needs her mom to be available to take her to piano lessons or discuss the drama of high school relationships, and I can’t do that if I’m in the car for two hours with Adam every day. That might mean that I need to accept the offers of help from family and friends and not feel bad when I tell the PTA President that I can’t be in charge of the Book Fair. Focus on the big picture, do what you can, ask for help, and let go of the guilt!

4. Flip your perspective. I think I’m a naturally selfish person, because most of the time, I tend to view Adam’s Autism in terms of how it affects me (how I have to adjust my schedule, how he dictates what I am able to do, how I have to adapt just about everything in my life for him) but I’ve really tried to consciously consider how it affects him. How terribly frustrating it must be to not have the ability to express your thoughts, to have little control over your day-to-day activities, and to be completely overwhelmed by and unable to process the sights, sounds, and emotions in your life. It breaks my heart for him! BUT, despite all of that, I can think of no one who is more full of life, love, and joy than Adam! Adam’s not stressed out by the projects on his to-do list, he’s focusing on how the wind feels when it blows through his hair. He doesn’t care if he has the latest iPhone, he’s just as happy with a couple of helium filled balloons. The world is new and different every day for me when I try to see it through Adam’s eyes; it’s brighter, more complex, and nothing is ever mundane or ordinary, and that perspective is one to be envied and celebrated! There are times when it feels like I’m viewing the world while standing on my head: everything is upside down, it’s dizzying and confusing, and I feel like I might throw up, but oh, how beautiful the world can be when I see things in a different way!

5. Expect your child to achieve. I get it. You have this fragile little person and you just want to take care of him and do everything for him because you love him so much, right? Wrong! I found myself in this trap early in Adam’s diagnosis (and still find myself in sometimes now), but luckily for me, I came across a remarkable special needs mom who taught me that even though you feel like you should do more for your special needs child, you actually need to do less. Learning does not come as easily for Adam, and my tendency is to swoop in and make things easier for him, but the only way Adam is ever going to master a skill is if I don’t keep doing it for him. Crazy, right? Do I want Adam to learn to buckle his own seat belt? Get himself dressed? Write his name? Then I better back off and let him do it. I can’t even count the times that Adam has surprised me by whipping out some skill that I was sure he couldn’t do without my help. With Adam, there has always been a gap between what he could do, and what he would do (I laugh every time I hear an adaptive physical education teacher tell me that Adam can’t throw a ball; he sure doesn’t have any trouble throwing other items like shoes, shampoo bottles, or bagels), but when someone comes in and actually expects Adam to achieve, he almost always rises to the occasion. I firmly believe that EVERY child is capable of learning and growth, but we’ve got to stop making excuses for them. Have realistic expectations, but make sure you have expectations.

6. Laugh. All of the time. I saved this one for last because I think it’s the most important. Humor has saved my life. Autism is hard, but Autism is funny! When my next door neighbor calls to tell me that she just found Adam lying in her bed, I have to laugh (and also apologize and install a high-tech security system). When I watch Adam eat a piece of licorice like it is an ear of corn, or pick up the piles of random household objects that he very artistically arranges on my kitchen floor, what else can I do? I laugh! When the principal calls me to say that Adam is lying in the sun and won’t come in from recess, I wish her luck and I laugh! When Adam’s teachers send me pictures of him wearing hairnets over his face, or I notice that Adam has unscrewed all of the lightbulbs from the living room lamps and laid them neatly by the fireplace, I laugh! When I discover bags of Cheerios stashed in our heating vents, or watch him calmly remove ice cubes from the freezer and put them inside my pillowcase, I laugh! When he wears snow boots to school every single day of the year, puts on a life jacket and lies down on the front lawn, removes all of the canned food labels in the pantry, what do you think I do? I could go on, but I think you see my point. Laughter changes everything when you find yourself in a high-stress environment, and it has been my saving grace. Cultivate the ability to find humor in the unexpected, and your life will be so much easier!

Autism: Now What?There are so many other lessons I’ve learned from this boy, and I’m sure I will continue to learn from him for the rest of my life. I will never sugarcoat it and tell you that it’s easy; I am overwhelmed every single day. I often think to myself, “I want off of this crazy roller coaster!” If I could take Autism away from Adam, I would do it in a second! But would I ever want to change who I’ve become because of Adam? No way! How else could I have learned what it means to love unconditionally so effectively? How else could I have taught that to my daughter? How else could I have seen my husband’s quiet strength so clearly? How else could I have learned to rely so heavily on my faith? How could I not be grateful for the tremendous growth and love that have come into my life because of Adam? So please, never feel sorry for me because of the demands of taking care of Adam; I think when it comes right down to it, I’m going to be just fine.

But I swear, if I have to clean up any more chocolate lick marks on my wall…

 

Katie Wahlquist is a wife, a mom and a lover of homemade cinnamon rolls. She lives with her husband and two children in Utah.