Editor’s Note- For our “KNOWvember” piece, we are sharing thoughts from parents, friends and providers all sharing a thought about something they want to share in raising or knowing a special needs child.
Our goal in this is to raise awareness, share moments and help all to see what our lives are like.
We hope you enjoy it.
“My daughter is terrified to go out to public places … she would stay at home and never leave the house if I let her . My social fun loving , expressive daughter disappeared when her childhood was kidnapped by PANDAS” . ~ Mia, mom to a child with PANDAS
“I sometimes get sad watching my son’s peers play sports, attend slumber parties or simply play together. But I quickly remind myself that I don’t see sadness in my son- most of the time he is full of joy and lives life to the fullest!” ~ Jen,mom to a son with Autism
“None of us “signed up” for this struggle but I truly believe God gave me these obstacles that I face with my kids because He knew I could handle it and that my children would receive a warrior who sees NO boundaries when it comes to finding answers and empowerment for my children. It is my greatest joy no to be able to help others and spread awareness.” Emma Gaccione, West End Special Kids Advocate
“Tip: When I go out to eat with my 13 year old with autism, I never know if we will have a nice dinner out or if it will end with a sudden screaming fit from him. It helps to ask to have carryout boxes (for both me and him) to be brought right at the beginning of the meal, and also to pay the check right away. That way if he gets upset we can grab our food and leave. This is just as much for his and my benefit as it is for the benefit of the other diners.” Cindy- Mom to 2 children on the spectrum
“Aspie story: One time my teenage son who has Asperger’s Syndrome saw a nice looking teenage girl who had an “I ((heart)) Geeks” shirt on. He stopped her and pointed at her shirt and hopefully said “Really?” “Sure” she said. “AWESOME” he said. He was in a good mood after that.” Cindy- Mom to 2 children on the spectrum
“For my husband and myself we try to parent our son, Sebastian around him as an individual. He is obsessed with fire alarms.. not sure why, but he is… we try to cultivate anything he is interested in regardless of how odd it may seem to us… this is the best way we have been able to connect with him. So we have a collection of fire alarms at our home” Alicia, mom to a child with Autism
” My daughter hardly sleeps which means I hardly sleep, it is not always easy, but I do what I do because she needs me” ~ Jen mom to a child with Cerebral Palsy
“Somedays I don’t want to leave my bed and wish I could hide from the stares and screams. It is not easy.” ~ Anonymous mom to a child who is nonverbal.
“Working with children with special needs has shown me that they go through alot of the same fears and insecurities as other children. I think it is important to remember they are still kids, growing and learning who they are. Their disability does not define their entire being.” Alison Alford, Physician
“In life – those emotions that can consume us – can stifle us … guilt , anger, hurt…. ask yourself “can I fix it ?” If yes – take those steps . If it’s out of your control – leave it . Move forward. Let it go !” ~ Sharon, mom to a recovering addicted
“It’s hard when we go out and about and someone speaks to him, looking for a response. I try to take a deep breath as they try to force eye contact with him and look at me puzzled. He can hear you, he understands, but for now, I’m his voice. It’s a thin line of do I have this conversation with a complete stranger or do I jump in and answer for him.” ~ Aaron, mom to a little boy with Autism, Chromosome disorder, & a sensory disorder
“Don’t focus on what your child can’t do, but rather what they CAN do.”- Mark, pediatrician & parent to a child with Autism
“Noticing something physically wrong with your child… that’s just enough to raise your concerns, but not necessarily enough to go and fight with a doctor about it.” ~ Chelle , mom to 2 children with special needs
“I teach my children to be thankful for everything! But in terms of Jacob, my older son, I teach him not only to treat others as he himself would want to be treated, but more importantly, treat others how you would like your brother to be treated.” Traci, mom to a child with Downs Syndrome
“These children see the world with no scars, they are happy and appreciate all gifts daily, they teach me perspective”- service provider.
“I wish my friends with kids that had no needs would sometimes think about how hard it is for us to hear the things they worry about”
~ Jeanne, mom to a child with Angelman Syndrome
” Some days just really suck! Others are ok.” – Dan, father to a child with special needs
“Being with my friend’s child teaches me about how things are so different in their home” ~ anonymous friend
“As the mother of a daughter with Autism it becomes daunting over time to constantly accept the fact that there’s so many things she will not be able to do. You become twisted imagining the worst scenarios. There are few lovely experiences shared together, not because you don’t fiercely love your child, but rather you’re forced into more of a fight or flight reaction trudging through every day of care taking them. There recently was a bright spot for my daughter and the experience was one of pride and accomplishment that I’d like to share! Positive Vibes cafe offers a one month internship for special needs adults allowing them a safe environment while being trained in all aspects of business. After one month of training the cafe graduates them and not only is it a spirited and joyful occasion but symbolic of their hard work and certifies them with the ability to apply to community jobs. This experience of support and resourcing created independence for my daughter and forever will be cherished as her very own personal success! Thank you to Max’s Positive Vibes Cafe for placing over a thousand disabled adults into our community and giving them the chance to be autonomous and productive!!!!” ~ Tiffany , mother to a daughter with Autism
“No 2 days are ever the same”. ~ Ashley, sister to child with special needs.
“I end up being the student and they teach me so much.” ~ Marissa , teacher
“I so strongly believe that any child, or any person for that matter, that does anything “differently” fits into the category of special needs. If our lives are altered, needing to be changed and or adjusted, then yes,that is a special need.” Crystal Gareau, mom to a child with mental illness & blogger at Busy Mom Diary.
And mine- I had many- but the one I chose to go with for this is:
” I don’t always know how to do this, I feel lost & overwhelmed many times but will smile on the outside. Our boy brings me such joy, but I know he has so much more to offer, I hope we can get help to get it out” ~ Carissa , mom to Marky who is almost 14 and has Autism. PS- I wish he had friends, but that will be another post,