Three's a Crowd: Parenting a Special Needs Child. Part Two

 If you ask a mother what sex she had hoped her child(ren) would be, most likely she’ll say,  “I didn’t care as long as I had a healthy baby”. Sometimes, however, things don’t go quite as planned, and mother’s find themselves digging deep for strength where they thought there was none. 

The two mom’s highlighted today had to do just that. Each of their children was born with special circumstances that most have the luxury of never facing.  Not only do they face their circumstances with brave faces, but they also have other children to tend to as well. Physical and mental energy, time and money are all things given to children naturally, but a special needs child may need just a little more. How do you give a child all of that when life continues to move? More importantly, how do you ensure your child gets all the love and attention they need when there are others that ache for the same amount of attention and love?

Amanda Rivera has two beautiful sons, is married, and splits her time between amateur modeling and being a homecare facilitator. From the outside Amanda is in a great circumstance. You would have never known that most of her family time is spent in hospitals and emergency rooms, fighting insurance companies and doctors, because her youngest son Tristan was born with eosinophilic eosphagitis. Eosinophilic Esophagitis, or EE is an allergic condition of the esophagus. Basically, Tristan has food Allergies. A lot of food allergies. This goes beyond your typical peanut or gluten allergy; Tristan must be a feed a special formula through a feeding tube in his stomach to sustain his health. He is limited in the food he can actually eat because there are so few choices. Peanuts, soy, gluten, dairy, meat, tree nuts, corn, this is the short list of some of Tristan’s Allergies. 

Amanda highlights milestones on her facebook support page Battling Eosinophilic Esophagitis, Tristan’s story. “Day one... ate a whole apple slice... let’s see how this goes”, and the pitfalls, “Tris is in pain again, I wish I could take it all away..”, but recently she opened up to talk about her oldest son Aiden. Amanda talks about how hard Tristan’s disease is on Aiden, and how he hates watching his brother suffer. He is only 8 and does not understand, but he knows he wants his brother to get healthy.“We try to bring him with us to less serious appointments. He didn’t understand when he was younger, but as he has gotten older he sees it and it upsets him.” 

When asked how she balances all of it Amanda said that, “Aiden actually came up to me and told me that he was not happy. I was devastated. I did not realize that he felt that way. I knew something had to be done. Jose (her husband) and I try to have days exclusively for Aiden. Whether it is a movie, taking him out to eat, whatever, we try to give him as much individual time as possible”. Individual time can be hard, but Amanda knows that it is worth it. 

“This disease affects the entire family, not just Tristan.” Amanda went on to talk about how she wonders if Aiden holds things in so he doesn’t seem selfish, but that is not what she wants for her son. “They both need attention and love and I’m going to give it to them”. Her best advice? Balance. “It is hard, and it’s not always going to work out the way you want it to, but putting the effort to recognize what you are capable of doing, and what you have accomplished is important. Don’t put yourself down”.

She’s taken to yoga and going to the gym to battle the mounting stress that occurs on a almost daily basis. Sometimes Amanda worries that she will not get the opportunity to go back to school to become a nurse, but she knows that she is doing the right thing and the opportunity will come when the time is right. “You just have to modify your plan and not beat yourself up because it didn’t go the way you wanted it to the first time around”.  

Cathy Wimple is a charming woman. She is funny and warm, and smiles often. We met recently for Alphae’s spring photoshoot and I immediately took a liking to her. Her daughters, Taylor and Brooklyn, were shy at first, but opened up and played as the day progressed. When the shoot was done Cathy began to open up about Brooklyn’s medical condition, Interrupted aortic arch & ventricular septal defect,a heart condition she has had multiple surgeries for. Heart defects like Brooklyn’s are the most common birth defects and are the leading cause of birth defect related deaths. 

Cathy praises the doctors and nurses at Michigan University Hospital as the main reason Brooklyn is still here to bless us with her sweet smile and head full of blond ringlets. “The hospital becomes a second home, and being able to trust the nurses and doctors that you see on a regular basis is an important factor”. The conversation went on an hour after the shoot was done. Cathy, talked about being in the hospital with her daughters and laughed when she understood my feelings of the dreaded “emergency cell”, a cell phone given exclusively to parents when a child is undergoing major surgery. 

Her daughter Taylor is protective of Brookyln and included her in all the games the kids played, making sure she felt comfortable and that she noticed all the different types of toys.

“I have worried that my oldest, Taylor, will end up having some kind of resentment towards her little sister, Brooklyn. With Brooklyn needing so much medical attention and therapies, a lot of our time is consumed with that.”. This seems to be a common feeling among parents of special needs children and Cathy seems to have found the important factor in making sure Taylor feels the love she and her husband have for her. “We strive to always make Taylor a part of it all. We talk about it, the processes of how and why we do things. She loves to help with the at home therapies we do with her sister, such as showing her word cards and trying to help her form the words to talk. “

From what it seems like, Cathy is doing a great job. Constantly she is updating her status or posting pictures of the girls playing together or funny things that were said. Her worries are not superficial at all, but the credit she deserves for her efforts is monumental. While like any normal household the girls may sometimes quarrel, they are in fact very loving and giving to each other like families can only hope for. 

Cathy knows that “ Finding a balance can take time. It's trial and error to see what does and doesn't work for the entire family unit.” She goes on to advise other families facing similar circumstances that, 

“The best advice I can give is to take it one day at a time. Some days will be tough, and push you to your limits. You have to keep in mind that tomorrow will be a new day, and that new day might just be the brightest day that finally puts you on a path in the right direction”.

Truer words could not have been spoken. 

Three's a Crowd: Parenting a Special Needs Child. (Part One)

Surgery.

It’s one of the few words I remember from Alejandro’s first appointment to the orthopedic surgeon. He was only two weeks old when we made the Michigan University Hospital our second home. Alejandro was born with  a severe case of congenital talipes equinovarus, otherwise commonly known as club foot. His right foot seemed to be ok, as far as club foot is concerned, but his left, the leg curved out like the limb of a bow, seemed to worry the surgeon, and we thought he might need corrective surgery on the entire leg. 

Alejandro's first attempt at transitioning to just Dobbs Braces

The surgery didn’t come till years later. Week after week of twisting his feet into cast. His crying sending me into a fit of uncontrollable giggles that resulted in more than one dirty look from nurses or physicians. There were braces, and cast, corrective shoes, custom plastic FABs, special sneakers, physical therapy, and exercises. Once a week we made the long trip out to the hospital, and once a month my entire day was consumed with not only twisting and crying, but MRIs and Ultrasounds that went on longer than necessary, because he was still a baby and did not understand how this scary situation was meant for him. 

When he was four the surgery finally came. By then Alejandro was a pro and wise to his situation. He knew he couldn’t run or play like the other kids without falling or getting tired easily, but he did it anyway. He started walking at nine months and has been unstoppable ever since. I should have known this powerhouse of a kid would take it like a pro, but thinking about him in surgery was too much for me. 

Seeing him go under, and having to carry around the tell-tale emergency hospital cellphone had me chain smoking outside the hospital for the two and half hours it took the surgeons. When they finally took us back to recovery and told me his spinal tap had not taken and he was going to be in a severe amount of pain, my heart hurt. The recovery room was crowded with screaming children fresh from surgery, and I found my little man at the very end of the long room surrounded by a gaggle of cooing nurses. His big blue eyes dampened with tears as one of the nurses rocked him gently. 

Alejandro on the trampoline despite a serious amount of "No's"

When we received a room, another child was already in there fast asleep. His head was shaved and neat stitches zig zagged across like a well loved rag doll. The few days we were there I learned that he had just received brain surgery for his epilepsy. His mother was going through a divorce because the father could not deal with the situation. She ran back and forth between her job and the hospital, enduring little to no sleep, and to top it all off she also had another child. 

That’s when it hit me.

Mother’s, like that woman, were epic beyond all belief. My situation was minor in comparison. Yes, it is a heart wrenching situation to go through medical procedures with a young child, but there is always someone out there that is going through their own private struggle that makes you look like you are crying in the baby pool while they swim out in the ocean. I still could not imagine going through Alejandro’s procedures with multiple children. I felt worn down all the time and my tiny view of the world was focused only on catering to his needs. Surely if there were two children, one might suffer the injustice of the little bit of attention I had left. 

Alejandro is great now. He runs and plays after relearning how to walk. After a ton of physical therapy, you would have never guessed. The image of that mother, however, keeps me humble and appreciative. 

Alejandro age 6

Tomorrow I’d like to dedicate part two to other parents, like that mom, who have children with special needs and are superheros in my minds eye. They do it all with multiple children, and make it look easy even when it isn’t. 

Happy Earth Day!

Looking for a great way to engage and teach your child about the earth? Look no further! A Night Owl Blog has 20 great activities for you and your little one to participate in.

Happy Earth Day Everyone! 

Autism Awareness Day

Making special needs toys is a huge task.

I try to talk to as many people I can,

stay informed,

learn,

keep an open mind,

but nothing is as taxing, 

or as selfless

 as raising a child with special needs.

Every day could be different.

Every day can be a challenge,

but the love is the same.

Never ending, and deep, and beautiful. 

The kind of love only a parent can give.

Please take a moment today to share this post.

Maybe it will stop and make someone think.

We can all change the world together. 

Do you know what's in your children's toys?