What Parents With Special Needs Kids Want You To Know

As I sit here crying after spending all morning on the phone trying to get more help/services for my special needs son, I thought maybe I'd share a few thoughts....

If you think being a parent is hard, being a parent to a special needs kid is 100 times harder. We face huge challenges every single day. There are hard things about parenting kids with disabilities.

I love my boy....

Special needs families are buried in paperwork because everything requires it. From our kid's IEPs, to medical documentation, to data collection, to applications for services, - the paperwork is never ending.

We try not to compare, but sometimes it’s hard not to notice how different our kid is to their typical peers.

We feel like we are not doing enough. Deep down we often wonder, am I really doing all I can do? Sometimes, we have an overwhelming feeling of failing at everything we do because we don’t have enough time or energy to do it all. We feel like we are failing with our kids, failing at our marriage, failing at keeping a neat home, failing at our job.

Keep advice to yourself (unless we ask for it). What we need most is compassion and someone to talk too, not ideas on how we can be better parents. We are constantly weighing the advice of specialists, educators, therapists, and providers. 

It is hard when you cannot understand your kid because of a speech delay, or a processing disorder. It is hard when your kid doesn't understand what you are trying to tell him, after repeating it in different ways, multiple times. It can be frustrating when you cannot have a conversation with your own kid. It's hard when no one else can understand your kid.

 Forming friendships is not easy for special needs families because of the restraints on our time, energy, and finances. Be a friend through thick and thin, good and bad, seasons of contact, and seasons of distance. Offer to help, extend love and kindness.

We feel like we are cheating our typical kids from having a normal childhood experiences. We can't always do the things we want to do with our typical kids, because we have to make acceptions for our special needs kid. We feel torn, and we fear that our typical children will feel less important or forgotten.

Special needs parents need a break. But finding loving caregivers, that understand our kids needs can be challenging. Often, even when we do have a chance to go out for a date, or get some time to rest, we still have all the regular stuff that we still need to do.

It is tiresome when other people throw judgment at us. It is insulting when people hint they could do better. The constant battle with schools, doctors, insurance companies, etc, is exhausting. Some people don’t even give our kid a chance.

We don’t want to be isolated, yet sometimes because of our kid's needs we find ourselves alone. We want friends. We want our kid to have friends. At, the same time, we can't always come to gettogethers. Being around people is hard, especially the older my son gets. Extended family get togethers are hard for him, the noise hurts his head. And some people either treat him as a baby or pretend nothing is different with him, both is not good for him.

Be considerate of our time and schedule. If 30 minutes to visit is what we have to give, lovingly enjoy it! Don’t make us feel guilty for what time we can’t give. Instead celebrate and cherish what time we can give.

Special needs families’ plans can change on a dime, because our kids needs can change on a dime. Try to be understanding and not take it personally if plans have to be cancelled or changed. Relieving us of the pressure to make it to an event is a huge help!

We worry about the unknown, and what the future holds. Will our kid ever live on his own? What kind of life will he have? Will he be able to get a licence, or have a job? What will happen to our kid when we are not around?

We grieve the loss of the kid we thought we would have. We love him, but no one is prepared or wishes to have a special needs kid. We still hold out hope that our kid will be normal someday, although we know it is wishful thinking.

Oftentimes, special needs families feel like we have to put a positive spin on our situation because we don’t want to come across as complaining or weak. But, we need to be able to let off steam, and be honest about how we are feeling – happy, sad, or anywhere in between.

The financial aspect of being a special needs family is overwhelming. My husband works overtime every single week. Our family's budget is tight, in order to pay for our kids therapies, appointments, co pays, transportation, childcare, special programming, dietary needs, high quality, whole food vitamins, medications, and more. We usually have a new bill come in before the last bill has been paid. We are still paying off medical bill's from his emergency brain surgery a year ago. And there are, and will always be on going testing, which averages $500 out of pocket everytime.

We are obligated to make heart wrenching decisions. We make painful decisions that hurt our heart and leave us questioning everything we thought we knew or understood. 

Many of the choices we are forced to make have no right answer, just the lesser of the hard and painful wrong choices. We do our best but we don’t always get it right no matter how many sleepless nights we spend agonizing over how to handle a situation. Many times I simply don't know which desision to make... all I know is that I want what's best for my kid.

The love for our special needs kid, compels us to stand strong against the tide crashing against us: the stares, the school system, the medical billing, the ignorance from other people, and the lack of support. And although we stand strong, we get tired, sometimes we are barely keeping our feet planted and we fear the tide will finally defeat us and wash us away. 

The truth is that it's incredibly tough to have a kid with special needs.

More about our special needs son: 

Helping My Son

To My Special Needs Son...

Putting Our Homeschooled Kids In Public School
Kids With Learning Disabilities 

Emergency Brain Surgery

Note* Our son is a special needs kid. He is on the spectrum with an Intellectual disability, which is a
neurodevelopmental disorder with significantly impaired intellectual and adaptive functioning. He functions on a kindergarten level and has multiple learning and mental disabilities. He sees everything in black and white. They don't know if he will ever learn to read or go beyond where he currently is academically.