Take the time to meet our children, and take the time to know us:
Lauren (McCune Albright Syndrome), Jaden (Autism, type 1 diabetes, & leukemia), Alaina (dyslexia), and Josh (Autism)… all these children are wonderful & a blessing to us "SPECIAL NEEDS" Families!
I am the parent of a “SPECIAL NEEDS” child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.
Please do not pass judgment of me without knowing why I did not attend homeschooler meetings, charity breakfasts, or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch, or grab a cup of coffee. I love to participate in “Mom’s out” functions, but often have no time for myself.
I was/am in survival mode to keep my family in tact, and to give my child the best quality of life possible.
I was/am presented with parental decisions that have torn me apart, and kept me up more nights than I can possibly remember!
I had/have spent most days of the week at therapy and doctors appointments… and most nights up researching treatments and medication options. My closest friends with special needs kids know just what I mean, as we are often online together at 3am. ;p
I was/am forced into isolation at times due to the stigma and misconceptions that are epidemic in our society. You would be surprised how many people move away from a child like ours in a pool, or at a public event. What a shame, some people will never know how wonderful & truly blessed they would be by knowing our special needs child… he is so very wonderful in God’s eyes!
I became proficient at prioritizing my life, and learning to let the little things go. I learned to look at others with compassion, instead of tabloid material. Best of all, I learned to turn a blind eye to the stares or ignorant comments!
I did the best I could… I helped my special needs child be the best that “he” could be!
I survived!
I am one of the lucky ones, my child has blossomed and has exceeded all our expectations. PRAISE THE LORD!!!
I have now become strong, I have become confident, and I have become a fierce advocate for parents of special needs children. The growth did not come without many painful & tearful nights, but it did come eventually.
So I ask you, please….
The next time you see a parent struggling with a raging child, a confused child, a child making odd movements or sounds, a child that seems to be in a world of their own… BE KIND, Give the parent a smile of recognition to show that you understand what they are going through. Ask if there is anything you can do to help, or offer for them to go ahead of you on line.
The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues (Loud noises) and social situations (groups of people). Please send their child that invitation, and know that more times than not they will not be able to attend… but appreciate being included. Understand that in order for their child to go to the party the parent may need to stay for a little while with that child, and please make them feel welcome. When they let you know that their child cannot make the party, consider inviting that child for a one on one play date at the park instead.
The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem, and causes school anxiety.
Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits! Take a minute before you call, and know that they appreciate all you do for their child. Try to appreciate all they do as well… then make the call.
The next time you are in the teachers lounge, Starbucks, or Wal-mart… please do not discuss their child! Please do not make negative comments about their parenting, or their child’s behavior… it will get back to them. WORDS DO HURT!
The next time you pass the cafeteria and see their child sitting alone… please consider inviting that child to eat lunch in your classroom or be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area.
The next time they are at the CSE meeting planning their chid’s IEP… know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face… for homeschool mom’s, and for children in traditional schools. Know that the last thing they want is an adversarial relationship… so please, show them the same respect they show you!
The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, think outside the box… their parents do.
The next time you see that child in a wheelchair, unable to speak, or control their movements… don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent, or that they don’t understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain… just give them a smile.
The next time your child comes home telling you how Johnny or Susie is so weird, take the time to TEACH about differences. Take the time to TALK about compassion, acceptance and special needs. Please remember that your child learns from you! Be a role model, mirror respect, and discourage gossip!
The next time you hear a comment about how “out of style these kids are”… educate about tactile sensitivities, and the fact that these kids cannot tolerate many textures. Imagine what it would feel like to have sandpaper in your stilettos, or tight elastic holding on your tie.
The next time you see an out of control child… do not assume it is bad parenting! Understand that many of these disorders have an organic basis, are biological, and are real illnesses. When you hear the word mental, terminal, rare disease illness, take out the “MENTAL, TERMINAL, & RARE DISEASE” and remember ”ILLNESS”!
Know that it is this generation that can stomp the stigma, and create a world of acceptance.
The next time other parents are talking about “Those Kids”… be our heroes, stand up for us!
The next time you see a special needs child, please know they are not just special in their needs… but in their brilliance as well.
In Christ~ Heath
