Categories
Let's Talk Special Needs

The Paralyzed Boy Who Walks

Note to my readers: Kara is my cousin’s wife. She is brilliant, talented, kind, thoughtful, and an inspiration to mothers everywhere, but especially to those whose children have “invisible” challenges. I am deeply honored and so grateful that she has shared her story here, and I only wish you could meet her beautiful family. I promise, every word of this is worth reading and sharing. (Warning: keep a tissue handy). -Shadra

A very special contribution from Kara Lyn Lund

When my youngest son was two years, two months, and one day old, he sat down next to his big sister to eat a bowl of fruit loops and his life and the lives of everyone in our family changed forever. That moment happened to be the moment when a congenital defect that we were completely unaware of suddenly manifested. He was probably born with it. It was something called an arteriovenous malformation, or AVM. It’s a defect caused (in his case) by a genetic disorder called Hereditary Hemorrhagic Telangiectasia, or HHT.

AVMs are where blood vessels don’t form properly and cause weak places in the vascular system. They can be anywhere in the body, and for many people with HHT, they just cause annoying nose bleeds. However, when one of these AVM’s bursts in the brain, spinal cord or lungs, you can imagine how much worse it can be. In my son’s case, a large AVM was buried in the upper part of his spinal cord. As he sat to eat breakfast that morning, that AVM burst for no apparent reason. It simply couldn’t stand up to the pressure of a beating heart and circulating blood any longer. It was like having a stroke on the spinal cord, and caused almost complete paralysis within a few hours. Although I did not understand what had happened to him until the following evening, I will always remember the colorful bits of breakfast cereal that spilled across the table when he suddenly lost control of his limbs and everything changed.

His story is a long one. We spent about two months in the hospital while he had lifesaving surgeries, complications, more surgeries, tests, and therapy. During this time, my husband and I learned how to do all the new cares we would be responsible for when he left the hospital. He came home with a trach and ventilator to help him breath, a g-tube for feedings, and more equipment than I care to list. Although he has grown stronger in the (almost) three years since his injury, he still uses all of that equipment and more. Wheelchair, stander, commode, hand splint, foot braces, torso support, the list could go on. He has gradually gained strength back in his arms and even gotten some very limited use of his fingers, however we have never seen any indication of sensation or control below his chest. While we watch and wait for medical and therapeutic advances to give him more hope of walking, we do not anticipate him being able to walk again without some considerable miracles.

And he is one of the happiest and smartest five-year-olds I know. He will do great in life.

Now, let me tell you about my other paralyzed child. My oldest child.

My oldest son has always been what you might call quirky. He’s always been different. His speech therapist when he was three called him “unique.” In his kindergarten graduation program, he stood staring out at the lunchroom full of parents and only opened his mouth to yawn once while the other kids sang songs about letters, numbers, and the days of the week. In first grade he refused to read aloud for the state reading test, which resulted in a letter claiming he did not know how to read. We all knew he could read just fine, he just wouldn‘t read under those circumstances. I could make a list about a mile long with all the things he did that made him just different enough from the other kids. Enough to make me wonder if there was something going on with him.

He has always been sensitive to change. And by sensitive I mean the first time we moved when he was about 18 months, he had a look of terror on his face as he watched people carrying furniture out of our apartment. It was as if the world were collapsing in on itself. Even with small changes he needed advanced preparation. So in second grade, when I brought up the idea of taking a lunch to school rather than eating the cafeteria food, he definitely had a hard time with that idea. I told him I would send a note to his teacher so that she could help him get to the right place and that everything would be just fine. He grudgingly agreed to try it out.

As it turned out, everything was not quite fine. His teacher made sure he got to the lunch room and found a place to sit. Then she left to eat her lunch in her classroom. He just sat. His lunch also sat, unopened, on the table in front of him. As he sat, the tears started to come. A boy asked him what was wrong, but he wouldn’t talk to him. The boy went and found the principal who came to the lunchroom to find my son standing with his face against the wall, crying. His lunch was still untouched. He told me later that he stood against the wall to hide. Changing one small thing in his routine made him want to hide. Eventually, the principal was able to talk him into sitting down again. They opened his lunch bag together and pulled out the contents so that he could eat. While most of his quirks could be explained away by saying he was shy or reserved or smart or just different, I knew this reaction was outside the realm of “normal.” While he had had some minor issues in the past, this made clear to me that he was going to need more help to succeed in school and life in general.

Getting that help has turned out to be a long process. It’s taken years just to get a diagnosis. I’ve repeated stories of his infancy and childhood to numerous doctors and therapists.  Recently, he was diagnosed as high-functioning autistic. Over the years, I have learned about autism and aspergers. A friend’s daughter was diagnosed with aspergers a few years back. I would watch shows that included high-functioning autistic children, and while not every symptom matched up, many of them did. Sometimes it was like looking at a reflection of my son. The older he has gotten, the more clear it has become that he has special needs that cannot be met by typical parenting or teaching. His anxiety has become more pronounced. He has even threatened to end his own life. He’s currently ten years old.

I feel like I am living with two paralyzed children. One needs a wheelchair and many medical and technological devices to help him live as independently as possible. The other one walks, runs, and jumps. One wakes up everyday ready for whatever comes his way. The other frequently has to be dressed and dragged off to school, not because he can’t do it himself, but because the world he wakes up in everyday is harsh and unpredictable. Navigating this world is overwhelming to him. When I look at my quadriplegic child, I feel hopeful for his future. He is happy and fun to be around, and if he were one day named homecoming king, I would not be the least bit surprised. We all admire his strength and determination. His biggest life challenges are there for everyone to see, and it is easy to see that they don‘t stop him from doing much. His older brother can walk just fine. There is nothing in his look that would suggest he is anything other than normal (Unless he has just colored his nose purple, which he did yesterday. I laughed when his teacher sent that text!). But inside, he is paralyzed. I don’t have to worry about his ability to move, but I frequently worry about his ability to navigate this life. Will he have friends? Will he be made fun of? Is he going to be able to participate in the same activities the rest of his class does? Will his teachers be patient with his inability to communicate his needs (in spite of a substantial vocabulary)? Will he be patient with them when they don’t understand those needs? Of my two special needs children, I have far fewer fears for my physically challenged son. I know that wherever he wants to go, he has the wheels, ramps, elevators and people to help him get there. For my autistic son, the path is unclear. I believe he has great potential. He is bright, and passionate. But there’s no wheelchair for him. He’ll have to learn how to jump emotional and mental hurdles that most of us step over with ease. I believe he can do it, but it will be no less miraculous for him than it would be for my wheelchair-bound son to someday learn to walk again.

 

Categories
Back to School

Back to School: Been Here Before but It’s All New

Getting Real With Veronica Ibarra

Well, it has been a while since I’ve found any time to think let alone write. I spent the summer having fun with the kids, and for some reason (probably their ages) I found that it took up almost all my time. That’s not a complaint, just how it turned out.

Now school has begun. My daughter is in third grade, which means transition from earning satisfactories to earning real grades. That makes me nervous. As a parent I believe it is my responsibility to support what she learns in school, and to encourage her to follow rules, follow directions, and strive to meet expectations. I’d like it if she would exceed expectations, but I want her to have fun and stay interested too. Delicate balance, that.

She’s been in school now for nearly a month. She started homework on the second day of school, and the battles have been consistent with what they were last year; however, the stakes are higher. It’s her homework, but I feel the pressure. I’m the one who has to ask if she has homework, knowing every day that she does. I’m the one who has to direct her to sit down to work on it. I’m the one who has to check over it and call her to task if she makes a mistake. Basically I’m the mean mommy overlord.

Then there’s my son who is beginning preschool. He doesn’t start until after Labor Day, but there’s a mountain of paperwork to fill out, a home visit to set up, a staggered entry day for him to attend, then his special services to schedule to address his autism. That doesn’t embarrass me or scare me for my son, but it does mean a lot more to keep up with making me his advocate.

My daughter has already noticed the different level of involvement I put in. She doesn’t fully understand the why, and points out the lack of fairness. I struggle to help her understand her new level of responsibility as a third grader and older sister, and to understand the differing needs of her brother as he’s entering preschool.

My mommy guilt level feels a bit high right now, no matter how much I try to stay focused on what needs doing for each of my children and loving them. I’ve already caught myself a few times stressing out, and baking more cookies than is wise. My husband has been doing his part, but even he looks at me with that pre-stress meltdown expression that has me scrambling to make sure things don’t crash around our ears.

Fortunately, things really are well in hand thanks to my organizational skills. It just feels like a lot to deal with. This is that time when things are changing, shifting, and we are trying to find our new normal. I know this. It happens every year, really. Back to school means back to routine and order, but first we must reestablish the routine and order.

And for me, this year’s routine and order is going to involve more.

Here’s hoping the adjustment goes well for us all.

Categories
Let's Talk Special Needs

What I Learned While Raising My Autistic Son

The relationships moms have with their children is complex and rewarding. Having a child is always a profound experience, but for Getting Real With Amalia Starr, the journey has been especially life-changing. We’re so grateful to Amalia for sharing her story with us here.

It is hard to believe that my son, Brandon is almost thirty-eight. We have been through a lot. There were so many times I felt like giving up and felt beaten down, but my love for my son kept me going. Brandon has taught me so much and these are just a few of the lessons and tools I learned while raising him:

1. Don’t listen to others when they say your child can’t do something.

2. Always trust your instincts and trust your heart.

3. Be respectful, especially when you think it doesn’t matter.

4. Being different can be beautiful.

5. Encouragement builds self-esteem.

6. Always listen to the silence in between the words.

7. Having and giving support helps to soothe the soul.

8. Taking care of yourself first gives you the strength to carry on.

9. Gratitude is a powerful tonic.

10. Hope and believing will take you through any storm.

11. Kindness is not a luxury, it is a necessity.

12. Never giving up is key.

13. ACCEPTANCE is the Answer!

There is no other way I would have learned all these wonderful tools and lessons, if it weren’t for the love I have for my son. Not only has he made me a better person, he has given me a purpose. I always knew as a young child that I would become a speaker, but I never knew what the subject would be. Because of Brandon, I am an Autism Motivational Speaker, and I love what I do.

I cannot thank my son enough for silently demanding that I grow and change every step of the way. He made me see life through his eyes and taught me to how to dig deep within, and be creative, and think outside the box. Yes, it took time to see the good and to be able to switch from feeling negative to being positive. But once I surrendered and accepted my son just as he was, our relationship completely changed for the better.

Categories
Let's Talk Raising Healthy Kids

The Vaccine-Autism Controversy

Recent news indicates that a British researcher Andrew Wakefield falsified information contained in his studies to tip the scales toward indicating a strong connection between the MMR vaccination and the onset of autism in children. His research caused a number of parents to halt vaccinations for their children and the number of cases of Measles and Mumps increased dramatically in the wake of the response.

MomsGetReal™ asked autism expert Amalia Starr for her response to the recent news. Amalia is the mother of an autistic son, an advocate for parents of autistic children, and a firm believer that regardless of the single study’s outcome, that a connection does exist. Here’s what she has to say:

Over the past several years I have had the privilege to speak to many audiences filled with parents who have children with autism. I am a mother of an autistic adult son, and I know that we as parents have no time to waste, make up stories, embellish, or fabricate anything. We barely have time to do what we have to do. So when parents tell me my child was perfectly fine until he was given the vaccine and then the following day he displayed symptoms of autism, I listen.

I place my focus and attention on the parents who had children who were once “normal” prior to giving their children the vaccine. For me, it is not about the numbers, it is all about our children who we love. For many parents, after giving their children the vaccine they are left to deal with their children’s newly acquired autistic symptoms for the rest of their lives.

This is truly a very sad and serious matter. Vaccines and autism, it has happened way too often to be a coincidence. I believe the connection is real. Hopefully one-day people will believe that the parents are speaking the truth and they will no longer have to make the connection of vaccine and autism a guessing game leaving our children at risk. We need to make sure our vaccines are safe for all children.

Categories
Special Needs

What to Do When Your Child is Diagnosed with Autism

MomsGetReal™.com is proud to introduce you to our most recent MomsGetReal contributor, Amalia Starr. Amalia is here to help us all understand a little more about autism and being the mom of a child with autism, and we are grateful to her for lending her expertise to us.

For more information on how to help your child with special needs reach his or her full potential please visit: http://www.AmaliaStarrSpeakerAutism.com

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Getting Real With Amalia Starr

It is important to be aware that negative feelings will arise. Try not to get attached to those feelings, don’t numb them out, and  don’t bury them. They will shift over time. Remember, it is a process. We are all different, but I have found that surrendering to “what is” helps one to move through the acceptance stage more quickly, as resistance to “what is” will only prolong it. When you are able to face the diagnosis head-on, the negative feelings will begin to fade away, and acceptance is right around the corner.

1. Gather as much information as possible.

2. Join support groups.

3. Talk about your child’s disability.

4. Keep a journal, and write down your negative thoughts onto paper and release them.

5. Find one person you feel comfortable sharing your innermost feelings with.

6. When you are ready, talk to other parents. They can be a great source of information and support.

7. Try to live in the present moment whenever you can.

8. Be courageous, and believe in yourself.

9. Trust your feelings.

10. Be kind to yourself.

11. Do not keep secrets, especially about a health condition. It causes more harm than good.

My son, Brandon, was diagnosed with epilepsy and learning disorders at age nine. The pediatric neurologist told us to tell nobody, including Brandon that he had epilepsy, due to the stigma attached. For several years, I did what she said and kept the secret to myself. That was one of the worst things I could have done.

I know from personal experience, that when our children are helped at an early age, they have a much better chance of changing negative behaviors, improving performance, increasing self-acceptance, and self-esteem. However, if you missed that opportunity as I did with Brandon, do not give up. We did not find out Brandon had Asperger’s until he was thirty-two years old. Early intervention is key, but I know firsthand it’s never too late to get help.

A) What I wish I knew early on about having a child with special needs:

1. Do not take it personally.

2. It is not your fault.

3. The sooner you give up resistance the sooner you can help your child.

4. Trust yourself.

5. When traditional treatments are not working, look into alternatives.

6. Doctors are not always right.

7. Find a physician you and your child like, and who understands your situation.

8. Acceptance comes only when you are ready.

9. Take care of yourself first so you will have more to give.

10. Get as much help, assistance and support from people who care, as often as possible.

11. Hold onto HOPE, and never let it go.

As parents, we must remember raising a child with special needs is a process. There may be days when we do not know how we can hang on, but somehow we make it through. The tools I found to be the most helpful were living in the moment, and having hope.

When we live in the moment, not out into the future, it helps to eliminate fear and anxiety. I also found that hope was not a luxury, it was a necessity.