A Label is Not a Death Sentence - It's an Opportunity!

Because I'm so open about my boys' journeys through life on the autism spectrum and because I have an education background, I get a lot of messages from concerned parents/caregivers about seeing "red flags" and asking how they should proceed. Some parents fear the dreaded diagnosis and accompanying "label", and I welcome their expressions of fear or denial. I feel it's healthy for parents/caregivers to have a safe place to express their frustrations, worries, concerns, and especially their joys.

After welcoming their fears, I like to express my beliefs to parents that a "label" is not a death sentence. It is, in fact a blessing, an opportunity for parents/caregivers to help their loved one to become the best possible version of themselves! You are now empowered with the legal documentation to require your loved one's educational institution to provide them with the supports they need to succeed!

If anything, the only "death" you will face is the death of some of your dreams for your children. It's normal for parents/caregivers to mourn the loss of the dreams they had for their kids, and we went through that as well as each son was diagnosed. What matters is what you do with that loss. Do you hold on to it and let it make you bitter, or do you let it go and move forward to help create the best life possible for your loved ones? In many cases, you'll see that their beautiful, unique souls will present an even better person than you ever dreamed for your child.

A label or diagnosis doesn't mean your child or even your family will have an inferior life to those their neurotypical classmates and their families. My husband and I always say that our family and our boys' lives aren't better or worse than others - just different. We have received numerous blessings from our special boys that neurotypical families could never fathom. (We have our share of unique struggles that neurotypical families do not understand as well, but we'll save that for other posts...)

Do you see "red flags" in your child's behaviors? Check out a "red flag" list and simple evaluation form here: Learn the Signs of Autism

Below are several of the concerns I consistently get, and my responses to give them another perspective on the matter:

1.) I don't want my child to feel like they are different.

 

ALL children have differences that make them the unique little beings that they are. Celebrate differences! Any child will feel love, support, & security if that is what you shower them with. If you constantly criticize, belittle, or yell at them, they may begin to feel insecure or exhibit feelings of low self-esteem. You help them achieve their first sense of self, so try to begin with the best possible foundation, and continue to build upon that throughout their lives.

 

As your loved one grows, help them see how special their differences make them. They often perceive the world in very different and unique ways that make them truly amazing. Tell them that. Show them that. Love them through the meltdowns (trust me - I know how hard that can be!) and praise them through their successes!
 

2.) My child will be made fun of for being different.

I hate to break it to you so bluntly, but kids can be cruel. Making fun of those who are different or perceived as week helps other students establish their "popularity or dominance". It's a sad reality, but it's one I saw regularly even amongst neurotypical ("normal") kids. 

 

Don't despair, though! We chose a different tactic, and so far it's been fairly successful! Our oldest son was diagnosed at age 3, and we've been very open with all his teachers, asking them to freely explain autism the best they can and to answer whatever questions his classmates have. My goal was for his teachers to help his classmates be comfortable with his differences and even empower them with ways to help him throughout the day. For the most part, his classmates have rallied around him and cheer him on when he succeeds. What bullying we have seen, has sadly been from other classmates in his resource classes, but so far, it's been handled well.
 

3.) My child will never be able to live a normal life.

 

Normal is in the eye of the beholder. It's a random, abstract concept created by a society that truly can't even define it. Will your child's life look exactly like their peers? Probably not, but that doesn't mean you can't give them amazing experiences and even learn so much more from them. Find out what modifications your child needs (headphones, areas that aren't crowded, etc.), keep in mind their likes/dislikes, and ALWAYS have a backup plan/exit strategy for activities & events. Sure, your adventures may not look like everyone else's, but seeing life through your littles' eyes make them that much more memorable! 

 

Pick sports or activities that suit their sensory needs (Bub loves watching things move at a decent clip, so bowling league and basketball were natural fits for him, while baseball is just too slow to keep his interest.) Chose activities that complement their abilities rather than setting them up for a meltdown. If they love animals, try getting to the zoo when it opens and is typically less busy. Many museums and movie theaters have sensory-friendly events where lights and sounds aren't turned up full-blast, and other families there completely understand any flapping, galloping, or other stimming they may see. ;) 

 

4.) I will never understand special education rights, laws, and lingo.

 

The dreaded "label" documentation REQUIRES your loved one's educational institution to create an educational plan (the Individualized Education Plan or IEP in most areas) that outlines the needs your loved one has, goals for helping them succeed, and detailed modifications that school service personnel must provide to help your loved one become the best student they can be. (Please be aware that their curriculum may not exactly match that of their peers in all areas, but it will be presented to them in a way that will help them succeed.)

 

I won't lie. Special education can be a difficult field to navigate, especially if you have a school district who is unwilling to pay for the resources your child needs. (P.S. In most cases, IDEA law requires them to provide necessary services.;) If you feel completely out of your element, inquire locally to see if you can find free or not-for-profit advocacy services to make sure you get all the help your child needs. Additionally, this article provides an excellent resources for special education terminology: 25 Common IEP and Special Education Terms

 

Don't let a "label" frighten you. Use it as a way to help your child become the best possible versions of themselves. Keep your heads up, and always look for those small moments of celebration to get you through the tougher moments! :)