#Team Maggie’s Family Journey:
I want to share with everyone the journey we are on with having Autism being in our house hold and what our daily lives are like in hopes that it helps raise autism awareness in the world and helps other families know that they are not alone in this world and journey.
We are not your average home/family. In our home we do different and accept every little bit of it…we wouldn’t change a thing! We are a family of four. With my youngest daughter Maggie who is six years old. Maggie was diagnosed with Autism very close to her third birthday.
I sit here and say this just like all the other parents who have children on the Autism Spectrum….you never ask for this, you never expect it, you hope it’s not true when you first get that diagnosis, but no matter what as a parent who loves their children you always accept it, acknowledge it and push forward! You don’t give up instead you gain strength and fight!
Our story goes a little something like this: Back when it was a few months after Maggie’s 2nd birthday, as any typical mother who can normally sense when things are right and wrong with their child I had that with Maggie. Maggie had mastered most of her milestones up till she turned 2 ½ years old, That’s when I noticed some changes and a turnaround in Maggie that as her mother I was very concerned about, such as: Maggie was 2 years old and still hasn’t made any type of attempt to start talking or speaking yet and I knew that most children at the age of two should be speaking up to 50-100 words, combining 2-3 simple word sentences, and starting to speak more clearly. Maggie didn’t accomplish any of these skills yet. We were lucky enough to get just a couple simple words like: mama and dada from her and that was about it. Something else with Maggie that had caught my eye and showed a red flag for me was Maggie was very particular, fussy, and picky with her food. She would only favor certain foods and had no interest in certain textures. When it came to certain textures that she showed no interest in she would normally spit the food out or not even tempt to eat it because she would already know that she wouldn’t like it.
With these two things being a major concern to me I knew I had to do something. As much as I didn’t want anything to be wrong with my child I knew I had to reach out for help and that’s exactly what I did. I had a friend tell me about a local service group to reach out to and have them come out and evaluate Maggie and I did just that. The group came to our home and evaluated Maggie in very many different categories. When they were all done with the testing and evaluation they went over the results with me and have confirmed that Maggie definitely had a speech delay and texture issues with eating. That being said, Maggie was eligible to start receiving speech and occupational therapy services from an Early Intervention group called Wee Talk. Being Maggie was under the age of 3 we were able to receive these services once a week in our own home. Megan…Maggie’s speech therapist and Jennie…Maggie’s occupational therapist were true Angels to her. They were very pleasant, patient and helpful in starting to make a difference in Maggie’s journey and I will never forget them and their true generosity. We were only allowed to receive these services up till Maggie’s third Birthday because once she would turn three years old all services would have to transition to our local Early Intervention School (BCIU), meaning Maggie would have to go to the school weekly to start receiving services in more of a classroom setting to help her with what it’s like being in a classroom and around other children.
Once it came close to Maggie’s third birthday. Our sessions were soon coming to a close with Megan and Jennie and it was at that time that we had to take Maggie to BCIU (The early intervention school) to have her evaluated by all kinds of therapists. About two weeks after we had Maggie’s evaluation we have received her results. That is when we have learned that Maggie is on the Autism Spectrum due to the presence of multiple symptoms that were present and shown during her evaluation along with being based off the questions we had to answer on her behaviors and etc.
As we all may know, two kids can have the same Autism diagnosis but may be very different because of their differences in behaviors and abilities. Based on Maggie’s behaviors we have learned through her evaluation results that her Autism symptoms ruled out to include the following: non-verbal and speech delay, difficulty in basic social interaction, difficulty understanding other people’s feelings and reactions, difficulty and failure to make friends of the same age, difficulty communicating needs or desires, doesn’t understand simple statements or questions, strong need for daily routine/order and gets upset when there is change in the routine and environment, clumsiness, emotional difficulties, trouble focusing and concentrating, unaware of danger and safety, uneven cognitive abilities, developmental delays, sensory processing disorder, picky eater and food texture issues, processes information differently and has trouble understanding, sees the world from different angles, and can have emotional meltdowns very easily especially with overstimulation. Like I said earlier two kids can have the same diagnosis but will show differences in their symptoms, which goes to show that the Autism journey is not the same for any two families. Each family must choose the path that best suits their own unique walk as they travel through their journey.
Autism doesn’t define who Maggie is. Maggie may have been diagnosed with Autism but you never place a label on a child or person who has been diagnosed with a disability. Their disability will never define who they truly are or their character. You look at the ability and not the disability. When I look at Maggie or think of Maggie I never ever see her Autism diagnosis. This is what I see when I look and think of Maggie, I define her as: Funny, Sweet and loveable, joyful, loves to smile and laugh, gives the best hugs, smart and intelligent, uniquely observant, extraordinary, strong and brave, friendly and kind, bouncy and filled with energy, well-mannered, ambitious and adventurous, persistent and determined, beautiful, cheerful, imaginative, and has a strong passion for dinosaurs and can even tell you almost all the names of them. So as you can see Maggie’s true character is special in her own unique way, but not really any different than you and I.
Maggie is now in her third and last year at her Early Intervention School. She goes three days a week and while she is there she receives speech, occupational and physical therapy. Since she has been attending there we have seen dramatic change compared to when she first started. When Maggie first started she was listed as being non-verbal with only speaking a few words. Now today she is no longer considered to be on the non-verbal list. She now can speak a very wide range of vocabulary along with speaking sentences. Has become very smart in knowing her basics like: numbers, letters, colors, etc. Her behaviors in general have changed and are not as bad as they used to be, including the meltdowns. Her social interactions have improved. She has no problem going up to children the same age as her and trying to play with them. And I must add…She even has some friends that live next door to us who play with Maggie all the time and they are so good with her and they even understand that she is different, but it never stops them from wanting to play with her. They love Maggie and I can’t thank them enough along with their mom for understanding there is differences in children and for accepting and being so kind to Maggie. Maggie has also improved with following directions and routine and order. I’m sure there is more that I’m missing that she has improved in, but the moral of the fact is that there is always hope! I’ve never given up hope that we could see improvement in Maggie and gain positive results. All of us Autism families just need to have hope because beautiful things can happen. However I can’t thank the team at BCIU enough because to me they are my true heroes! Without there kindness, wisdom, generosity, support, talent and dedication we wouldn’t be seeing this huge improvement in Maggie. I know there is still a lot we need to work on with Maggie but I can’t express how happy I am so far with the results we have already obtained.
In conclusion of my story that I wanted to share with everybody, I just wanted everybody to have more of a sense of what our journey has been like so far with Maggie and being an Autism family. I also wanted to write this for moral support for other Autism families in hopes that they know they are never alone. We all are walking this same path together and will forever be having each other’s backs and support. We all have endured: the judgmental stares, emotional meltdowns between both the child and parents, hits and kicks, non-stop pressure, desperation, feelings of helplessness, not being able to engage in normal activities, having the courage to go out in public, hearing rude comments or remarks from the public and sometimes even from family members, getting the sense of people wondering why your child can’t be “normal”, and so much more. But what we all need to be recognized for is: the power to never give up, the abundant amount of patience we need daily, the depth of love we hold, how to manage life when things get really tough, how to hold our heads up high even when it’s a bad day and we hurt inside, feeling joy, pride and thankfulness ,more than we cry, we learned how to handle stares and remarks with dignity and grace even though deep inside it brings us pain, being wore out but will do whatever it takes to help our kids, having strengths we didn’t know we had and dealing with fears we didn’t know existed, being strong cause we have no other choice, the ability to keep everything together even though most times we feel like were falling apart, try to make the worse seem better, the joy we celebrate with every smallest bit of progress that others wouldn’t even understand, we are selfless and just want the best for our kids, and most importantly having the best feeling of knowing that in our children’s eyes we are there champion or super hero.
We all want the same thing in this world and that is for our children to be accepted. We all wish for the day that the world can just embrace differences and come together with understanding and acceptance. We need to try together to change the way the world views our children. We need to come together to raise Autism awareness and help the world understand and accept invisible needs, disabilities and illnesses. Let’s help transform the lives of those affected by Autism today and tomorrow. Let’s work together on spreading awareness and kindness! Cause when we look at our kids, we just see kids. We hope you’ll do the same! Our children deserve that!
And for that reason this is why we participate in the Eagles Autism Challenge. This is our 3rd year participating in the Eagles Autism Challenge as #Team Maggie. 2019 was our first year attending and from now on we will always be taking part in the Eagles Autism Challenge. This event is nothing but amazing! The whole Philadelphia Eagles Organization and Eagles Autism Foundation really makes this event truly special for all people living with Autism and their families. I cant express enough the outpour of kindness, generosity, love, consideration, and huge amounts of support this organization shows to the Autism community. Everybody was so friendly and non-judgmental. They provided great resources to the families and had plenty of entertainment for the kids to enjoy. And now this year Lincoln Financial Field even added a sensory room for people on the spectrum. This organization has a huge dedication on making a difference and raising funds for innovative research. They truly want transform the lives of those affected by Autism. With that being said, this is why we join the Eagles Autism Challenge every year in helping to make a difference in something that touches our hearts and means a lot to us. Won't you consider making a donation today to help make that difference?
**I want to share one of my favorite quotes that is so true about Autism and means a lot to me**
“When you have a special child with invisible needs, the world doesn’t understand our challenges. They don’t feel our pain or the joy for the smallest bit of progress. This is a secret world that only those who live in similar circumstances can understand”
-S. Zajicek
On May 22, 2021 we will join the entire Eagles organization and thousands of others from the community to ride, run or walk in the Eagles Autism Challenge. This event is dedicated to raising funds for innovative research and programs to address the complex issues presented by the condition of autism. By providing the necessary resources to thought leaders, we can advance scientific breakthroughs. All participant-raised funds, 100 %, will go directly towards autism research and/or programs at beneficiary institutions, as together we shift from autism awareness to action. I hope you will consider making a donation towards my fundraising goal to help transform the lives of those affected by autism today and tomorrow. Thank you!
