Forever Thankful

Major holidays always seem to surprise me. Not in the way of the last minute shopper, but in a way that I know a lot of families can relate to. Every year I think "Wow, we made it through another year and we're OK.".

I'm thankful for every opportunity I get to say that. Every chance I get to prove to my son that even in our worst of situations we can get through it together, as a family, and we will truly be ok.
We are in a much better place than we were two years ago, and every year since that year we have gotten stronger, bonded closer, and I have become a better mother because of the things he has taught me.

This year we spent Thanksgiving with the Salvation Army, handing out meals to the homeless. This is not a new feat for me, but it's a first for little man, and although I know I've raised him well, I was unsure of what he would say or how he would act. He does not have a filter, does not get that he may say things that can hurt other's feelings when to him it is just the plain and obvious truth.
He did more than impress me today, he astounded me. With no hesitation he walked up to people, asking them if they were hungry, and would they like a meal. He interacted with people and made jokes.  Suddenly I no longer saw my baby, but a little boy and the future young man he would be.
He made me proud that I was the one lucky enough to raise him.

This year I am thankful for many things, but I try to be thankful every day. I have a list I've taped months ago to my door to remind me why I should be grateful, why it is important to stay humble and never forget where I have been no matter how far I go. Every day has granted me new opportunities and I speak to more and more people that are leading this company toward an extraordinary path of success.

I don't believe in luck, just fate, so today I am thankful for that. Thankful that I always cross paths with people who have exactly what I need, because I know many people do not get as many opportunities as we have. I can appreciate it, because I know eventually I will be able to give back through larger acts, but for now I am grateful that I can give back in any small ways I can. I am especially thankful for people and family who see me as I am capable of becoming and not just who I am now. Without their confidence and help I know this road would be far less paved. That means so much and for it I owe them the best possible version of myself.

Happy Holidays everyone.

Love,
Danielle

Miranda Smith: Happy Thanksgiving

Today as we celebrate Thanksgiving, I have to say that there is so much to be thankful for. I am thankful for my salvation and for the love of God. Without him in my life I would not be able to get through my day to day life. Next, I am thankful for an understanding and compassionate husband. He is truly my rock through everything. Without him, life would not be the same. Also, I am thankful for all three of my kids. They have shown me how unconditional love truly works. They may drive me batty sometimes but I would not trade that for the world. I am thankful that my kids have struggles. Dealing with the things that we have to deal with has made us all stronger. It has helped us learn to lean on the love of God. I am blessed to have all the struggles that I have in life and I wouldn’t have it any other way. I hope all of you have a great Thanksgiving and don’t forget to thank the one who really matters, God. Without him, nothing would be possible. Happy Thanksgiving!!!!

Amanda Rivera: Be grateful for everything.

Reality has hit! After five years of having a son who has Eosinophilic Esophagitis I have realized many things about life. Life is too short to worry about the little things. I am reminded each time we end up in the hospital how precious life really is. This is the time of year to be thankful for life and all that it has to offer. 

We tend to take life for granted sometimes. I know I definitely do! Life is a precious thing, we are lucky to be happy, healthy, food in our bellies, clothes on our backs and a roof over our heads. There are many people in this world that don’t have anything. I tell Tristan that even though he has to go through so much at such a young age he is strong and he should be thankful for what we do have. I know many children that have Eosinophilic Esophagitis and they are strictly tube fed, no safe foods at all. Tristan is lucky and I say that to myself every day. Things could always be worse. I do not want anyone to feel sorry for our family for having a special needs child. This does not and will not define us as a family or even Tristan as a person. 

Tristan has been having more bad days than good, he has been getting upset more often and having more melt downs. I know it is hard for our five year old to understand life and to always be happy. He usually is such a happy child and I miss it. As a special needs parent I try to guide him in the right direction. I want him to live a happy and healthy life and as his mother and his advocate I have to do anything I can. I remind my boys all of the time that we need to be thankful for what we have in life. I want them to know that life is a gift. 

Think about what you are thankful for, not only for this time of year but for the entire year. When times get tough think about everything that you have, your families, friends, food, a place to live, clothes, etc. Realize that there are people without a place to stay warm in the winter, food in their bellies, clothes on their backs, or even their health.

My point of this post this week is to be happy for everything you have and the bad days will not seem that bad anymore.  

You can follow Tristan's page here

You can follow For Special Needs here

Amanda River "Accidents happen"

When you have a special needs child you always need to stay one step ahead of the game. I have always thought that I was ahead until this week when Tristan surprised me. He is five years old and not aware of how dangerous eating something can really be to him, even though we have talked to him numerous times about the possible reactions that could happen if he did have something he should not. 

This week Tristan took a “gummy” from another child in the cafeteria. Now it was not a severe reaction, but he did have some obvious issues after that. I did not know until he came home clearing his throat. I had to ask him myself if he was ok and why was he clearing his throat. Tristan told me his friend gave him a “gummy’, he took it and ate it because it looked just like the ones that he normally eats. I explained to him that he should not take anything from anyone unless it is what I or his father packed for lunch or the snacks that his teacher has for him. Tristan was in tears thinking that he was in trouble or it was going to hurt him more. Luckily a little Benadryl and some water helped his throat clear up. 

Now I have realized I can not expect all of the school staff to watch him like a hawk and it hurts that I am not there with him. I want him to feel as normal as he can be even if it means a few accidents and reactions here and there. I can’t help but think; could the next reaction be worse? I pray it is not, and I will continue to make sure he knows not to take anything from anyone. Unfortunately I feel that I can not and will not put my child in a bubble. I will not shelter him and scare him for the rest of his life. It is hard knowing that I can not be by his side every day for the rest of his life. I worry daily but I can not have this disease consume and ruin our lives. We are not going to let something like this run our entire world. This situation just taught me that I truly can not always be there and I can not keep him from experiencing the world around him. 

Miranda Smith on Chronic Illness

Janiyah was my biggest baby that I gave birth to and now she is my smallest child right now. Ever since she was 2 months old she would get bronchiolitis. She would get it once a month up until she was about 8 months old. Then two months later she got walking pneumonia for the first time that took three rounds of antibiotics to clear up. When Janiyah turned 5 months old, she was hospitalized for the first time for five days because she got the flu and got severe bronchiolitis as a result. Now she only weighs 18lbs 9.5 oz at the age of almost 14 months. We are going through testing trying to figure out what is keeping her from growing on top of why she is getting so many lung infections. As a result of her health, I cannot work. This puts a huge damper on our finances, but if she goes into daycare, it could give her a serious lung infection that in turn could kill her. People don’t understand that she is as sick as she is because she is not sitting in a hospital 24/7. A child does not have to be constantly in a hospital to be considered a special needs child who gets chronically ill. It can be frustrating as a mother watching your child suffer time and time again because she keeps getting sick. I am praying that they can figure out what is causing all of this to be able to help her better

Guest Blogger Nicole Small: "If God got us to it, He'll get us through it."

It was in August of 1989 when my mom gave birth to me. This is also the day when both my mother and father received the news that their newborn baby girl had Myelomeningocele. Up until then they thought everything would be normal like it had been when my mother delivered my brother 8 years prior.

Right after my birth I was air lifted to All Children’s Hospital in St Petersburg, Florida, so the lesion on my back could be repaired. This is also when my VP shunt was implanted. I was then sent to the Shriner’s hospital in Tampa, Florida, for further observation due to the severity of my Spina Bifida.

 At the time of my birth, my parent’s had never heard of Spina Bifida and were at a loss and felt helpless. All they wanted to do was “fix me” and make sure I would be healthy. The physicians at Shriner’s hospital stepped in and reassured my parents that even though I had a tough road ahead of me, I would be okay. They did tell my parents that because of the severity that I may not live through the night, but the next day came and the next day followed, and I was still here.

 The doctors and nurses told my parents that as I grew older, more specifically when I turned the age of thirteen, that I would no longer be here because my lungs and heart would be punctured due to the way my spine was curved (from scoliosis). My thirteenth birthday passed and then my fourteenth, and my parents realized that no matter what the doctors had told them, I would be able to live a full life despite my being paralyzed.

 My life growing up was not a bed of roses, but no one’s life is perfect. During my school years I ran into some difficulties. Learning disabilities and frequent hospital stays meant I had to miss out on school assignments. This caused me to fall behind, but I never gave up. It was always one of my goals to finish school and go to college. In 2010 I earned a career diploma in Medical Coding and Billing.

 Throughout my life my parents have stuck by me through the good, the bad and the ugly. They never once let me see them break down, and they never let me feel sorry for myself. They knew I had a difficulty road ahead of me with lots of bumps along the way, but my parents and my older brother were along for the ride the entire way. My parents never once gave up on me. No matter what was put in front of us, we faced it together head-on, tackled it, and came through the other side better people.

 I think of Spina Bifida as a blessing, I do not know where or who I would be if I wasn’t born with this disability. It has definitely made me a strong person. I’ve never felt the need to ask “why me?” My parents have sacrificed from day one by working around the clock so that I could have the best life possible. I am happy to say that today, I have the best life I could ever ask for… I can make memories with my family and share my story with others. I want to provide that little ray of hope for someone who may not understand that having a disability should not get us down. Be happy to be alive and Carpe Diem, because you only live once!

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