Guest Blogger Amanda Rivera: "This IS normal"

People always ask me , “ What’s wrong with him?” “Will he always be like this ?” “Is he going to die?” “ Will he be normal?” Many other questions as well. 

          As a mom more than half of the questions hurt your feelings. I know most people aren’t trying to be rude, but the ones that are need to be educated. My son has special needs, it does not mean he is dumb, he is incapable of being a kid, he will never be normal, there is nothing WRONG with him. Honestly we don’t know if he will always have a feeding tube or severe allergies, etc. In my eyes he is about as perfect as his older brother or anyone else in this world. Yes, he needs a little bit more attention sometimes, but he does not need to be babied or treated like he is “different.”  

Tristan’s main issue is that he can not eat like a “normal” child. He gets most of his calories by a feeding tube in his stomach. However, he is able to eat a few things such as; strawberries, grapes, rice, beans, carrots(chooses not to), and broccoli . Rice gives Tristan many different options and variety of things to eat. We can make a cake , pastas, pancakes, bread, etc. Tristan is battling Eosinophilic Esophagitis, he is severely allergic to most foods. 

          Is it hard to cope some days? Yes, on days where Tristan has no energy, vomits , or breaks out in hives for no known reason. I feel like crying some days or ripping out my hair. I know I need to be strong not only for Tristan but for Aiden his older brother as well. Some days are harder than others, especially when we are in the hospital over and over for weeks or even months. Watching your child around other kids that can eat anything they want, birthday cakes, candies, pizza, ice cream, and many other things hurt. This is just some of the things that I come across on a daily basis. You learn to cope, you become stronger and stronger each day, and most importantly you get your child and family through anything and everything your faced that day, week, month, or year. 

You can follow Tristan's page: Here

You can follow Alphae Toys for Special Needs: Here

Guest Blogger Miranda Smith: "Mommy+Three, Raising children with special needs."

 I am 27 years old and the mother of three children. My oldest is 7 and has ADHD and odd. My next child is 5 and has speech delays. My youngest is 1 and she gets chronic lung infections and doesn't like to grow. They are my world and I wouldn't know what to do without them. I have now been married to the love of my life for four years and we have been together for 8 and a half now. I currently live in Greeneville Tennessee but am originally from New Jersey. I want to become a preschool special education teacher when I finish college.

Today has been another day of going to the doctors for my son. They are going to see whether or not his sleep patterns may be making his ADHD and ODD worse. So on December 12th, he will go in for a sleep study. I am hopeful to try to find out some answers, however nervous to find out if there is another problem going on with him. Every day is a constant battle with him and I just want things to get better, not only for his sake, but for ours and anyone who deals with him on a regular basis. I want to be able to get through a homework session without someone yelling at someone. He has the worst time focusing in school, and then when you make him focus to do homework, it is an all-out war at times. We have gone the medication route, we have gone the counseling route, the allergist route, the diet route, and punishment route. None of these made it better and easier for him to manage. In fact some of these routes made him worse!!! I am hopeful that this sleep study will show something that may be able to help in live his life day to day without his constant struggle with himself.

 Children with special needs can be a challenge as a mother but I have learned to rely on god and my faith during the trying times.

You can follow Alphae Toys for Special Needs: Here

Speech-Language Pathologist and Guest Blogger Erin Ray: "Language Enhancing Strategies"

Erin. M Ray M.S., CCC-SLP

Hello all you awesome mommies, daddies, grandparents and caregivers out there! My name is Erin and I am a Speech-Language Pathologist who has been working with special needs children for 6 years. 

Kids learn language in different ways and at different rates, but in all my years of experience, a child's environment is the most critical component to language development. Using some of these language-enhancing strategies during everyday activities can encourage your child to use and understand more language! 

Be a good model! 

If your child is using single words to communicate, model a 2-word phrase. If he is combining 2 words together, model a 3-word sentence. For example if your child says “ball” model “red ball.” 

Be a narrator! 

Describe what you are doing as you do it. “I’m washing dishes, scrub scrub scrub. All clean!” If you are playing with your child, say what you are doing using simple language such as “Put ball on top” or “Uh-oh, fall down.”

Be inquisitive! 

Help your child understand and ask questions. Play the yes-no game. Ask questions such as "Are you a boy?" "Are you Bill?" "Can a pig fly?" Encourage your child to make up questions and try to fool you. 

Be a storyteller! 

Read to your child. Sometimes "reading" is simply describing the pictures in a book without following the written words. Choose books that are sturdy and have large colorful pictures that are not too detailed. Ask your child, "What's this?" and encourage naming and pointing to familiar objects in the book by asking questions such as “Where is the duck?”

Be a kid! 

Children learn through play. Taking time to play with your child is incredibly important. This is an opportunity for you to model language while engaging in something your child enjoys. This is also great for improving joint attention skills. 

Be a cheerleader! 

Praise your child’s attempts at imitating after your model. Acknowledge, encourage, and praise all attempts to speak. Show that you understand the word or phrase by fulfilling the request. If your child grunts or gestures to a desired item, model the word you would like them to say. Make sure to pause to give your child the opportunity to repeat after your model.

IF YOUR CHILD NEEDS A PROFESSIONAL:

If you have concerns about your child’s speech and language skills, don’t hesitate to contact your child’s school Speech-Language Pathologist or talk to your pediatrician. 

Follow Alphae Toys for Special Needs> Here

Don't Dis My Ability- Guest blogger Nicole Small

My name is Nicole and I just turned 24. I have Spina Bifida… more specifically, Myelomeningocele with Hydrocephalus.

When I was growing up, I didn’t really have that many friends that I could relate to or who could relate to me. I felt that it was because of my disability. My parents and my older brother were the only people who I could turn to for guidance and advice on things, but they really did not understand what I was going through with my disability or just life in general.

I found it very difficult to succeed in school, both because I had a learning disability and because I was in and out of school due to check-ups or having yet another surgery. This made it hard to make friends. In addition, when I would have a complication from my Spina Bifida they would make fun of me.

When I was younger, I felt that other children either didn’t like me or did not have the same interests because I was in a wheelchair. I felt that people who saw my wheelchair automatically thought I could not do anything in life whatsoever… that I would just be in a wheelchair and have someone take care of me for the rest of my life. Granted I do have the help of my parents, but it really is not 24/7. As I am getting older I am learning that people just do not have the knowledge about Spina Bifida or are misinformed. All they see is a wheelchair. But it is more than just a chair! We are strong human beings because of what we have had to go through both medically and socially.

Over the past year or two I have really embraced my abilities and have tried to figure out ways I can help others learn more about Spina Bifida. I have found great support groups via Facebook. For Special Needs is also a great outlet for those of us who have Spina Bifida because of the sense of community. We all know what the other person is going through, and we can lend a shoulder to lean on and ears to listen if needed. It’s a great place to make friends with individuals who share a common interest. We need that community to provide a safe social outlet!

You can join Alphae Toys for Special Needs community here

You can contact Nicole here

For Science!

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.