Family,  Family Health,  Kids Uncut,  Parenting

10 Things Special Needs Child Parents DON’T Want to Hear

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Having a special needs child in your life is far from a death sentence. I also won’t sugarcoat it and say it’s a glamorous life. But, no life is glamorous. So, when God gives you a 7 pound 10-ounce bundle of joy wrapped in “special needs”, you just do life. You step up and take on the job you have been blessed with.

My son was born 3 weeks early. We had no idea he would be early. Well, let me retract that previous statement. He was a scheduled c-section for what we THOUGHT was 39 weeks due to an infection on my end. But, because of my insurance, we weren’t able to get another ultrasound prior to delivery. We hadn’t had an ultrasound since the 20th week of my pregnancy. As a result, when he came into the world it was estimated he was only about 36 weeks gestation.

Now, I know some of you mamas are shaking your head at me. Technically, 36 weeks is pretty darn close to full-term. It’s actually only a week away from what is considered “full term”. I definitely CAN’T compare my experience with my mamas out there who have given birth at 26 or so weeks. They are the REAL MVPs!

Anyways, he was born in fetal distress. He wasn’t breathing and he was blue. I didn’t get to hold him right after birth. During our relatively short hospital stay, 4 days to be exact, he wasn’t even allowed in the same room as me. Our whole stay consisted of him staying in the NICU. We had to wear gowns and masks to visit him or touch him. The NICU called my hospital room when he was hungry so I could go and breastfeed him. They applied the same rules when it came to changing diapers as well. I spent more time in the NICU than my own room I believe.

The first 7 or 8 months of his life weren’t extremely difficult. He had a few issues with gaining weight in the beginning. Nothing too alarming though. You wouldn’t be able to tell he had trouble with his weight at all if you saw him now. We also went through the typical viruses and colds due to daycare.

 

Confronting the Possibility of a Special Needs Child

 

Reality didn’t hit until about his first birthday. He was having trouble reaching typical milestones. We also could not get him to answer us or react to us at all. In all honesty, we thought he was suffering from hearing loss. Of course, these concerns were brought to his pediatrician at his 1-year check up.

Now, before I fill you in on our diagnosis, I want you to be fully aware that I am NOT that mom. I love my kids, don’t get me wrong. There isn’t an ocean out there I wouldn’t cross for them. Nor is there a bullet out there I wouldn’t take for them. But, I’m someone who has struggled with different medical “diagnosis” throughout her life. I feel as if I have a pretty good grasp on when to reach out to a doctor and when it’s not pertinent.

I wasn’t always like that. When my first child was born in 2011, I screamed “emergency room” for EVERYTHING. Yes, I was the person who had the kid in the ER with a little sniffle and fever. But, demanding to be seen before the person that came in bleeding to death. Because OBVIOUSLY, my kid was more important. How selfish and impatient was I?!  

Nowadays, I’m more laid back. I don’t run to the ER when one of the two — or both — gets a tiny fever. We’re stocked up at home for situations like that. I DO still contact my pediatrician when both get sick. The main reason is for my 6-year-old daughter. One, she’s in school. The school does not play with the whole truancy thing. Second, she was diagnosed with epilepsy at only 18 months old. A fever with her could be life-threatening.

 

Back to the topic at hand: my sweet special needs child.

 

Alright, the moral of all of that is that when I noticed milestone delays in my son, I really noticed them. I even felt somewhat embarrassed before I brought the problems to his pediatrician. Although I know that’s what they’re there for.10 Things Parents with a Special Needs Child DON'T Want to Hear

I can’t tell you how glad I am I went to my pediatrician early on in the same. Believe me, I got a LOT of uncensored advice from family and friends when it came to my concerns. As parents, we’ve probably all heard them.

  • “He’s just acting like a 1-year-old. They ALL act like that.”
  • “All kids develop at different speeds. There’s nothing wrong with your kid.” (Let me be clear, I am super aware that all kids develop different milestones at different times. That’s what makes being a human so great — we’re all a little bit unique!)
  • “It’s okay that he punches you in the face over and over again when he’s mad. He’ll grow out of it. He’s just being a kid.”
  • “There’s nothing wrong with that kid’s hearing. He doesn’t have any special needs. He’s just ignoring you.”

 

The list goes on and on. I know none of my family or friends mean any harm with their words. At least, I would hope not. But, still, when your heart still feels like something isn’t “right”, these statements start to make you feel a little crazy.

That’s him up there. He’s cute, isn’t he?! Well, this is younger him.

But, for once in my life, I ignored all “suggestions”. I finally put my “big girl mama panties” on and still threw all my questions straight towards his amazing pediatrician. Can I just say that I am glad that I finally followed my OWN gut?! Ugh, I’d been a puppet for so long! This is when all of his behavior finally made sense to our family.

Within a year of that diagnosis, he was placed in speech, special instruction, and occupational therapy. He also was blessed to catch a super quick appointment with the leading local pediatrician that specializes in the developmental delay in children. The reason I say blessed is that this clinic is well known for having a waiting list for new patients that are 1-2 years long. We were able to see the doctor within 3 months of our initial referral. But, with how amazing this doctor is, the 2-year wait would’ve been totally worth it. I don’t think she’s ever met a special needs child she didn’t adore.

Shortly after he turned 2-years-old, he had already received the following diagnosis:

  • Severe Autism Spectrum Disorder
  • Sickle Cell Trait
  • Global Developmental Delay
  • Severe Speech Disorder
  • Torticollis
  • Plagiocephaly

 

10 Things Parents with a Special Needs Child DON’T Want to Hear

After all of his diagnosis, you bet everyone and their mother came out of the woodworks with advice. Don’t get me wrong, I am so thankful for advice. That is positive and uplifting advice. Y’all, it doesn’t matter if you’re a parent with one special needs child or 10. It doesn’t matter if you’re parenting a completely normal and healthy 15-year-old. PARENTING IS HARD!

So, without seeming like a “prude”, I’d like to nicely ask a favor for all my advice givers out there. Could you at least try to be kinda positive with your help?

That’s why I’m sharing some of my biggest pet peeves when it comes to that wonderful “2-cents” everyone like to put in when it comes to a special needs child. In fact, most of these statements I have received from complete strangers. Strangers who don’t know me, my family, nor my child.10 Things Parents with a Special Needs Child DON'T Want to Hear

But, hey, everyone is entitled to their opinion. Plus, there are many days where I wish someone — ANYONE! — would give me sound advice when it comes to my two rugrats. But, I’m human. So, there are some days where I wish people just understood basic etiquette when it comes to offering their “sound and helpful” advice.

Alright, so here are MY top 10 things I’d really rather not hear when it comes to my special needs child. 

Before we get started, there’s a more recent look at the two individuals I am attempting to raise.

10 Things Special Needs Child Parents DON’T Want to Hear

1. There’s nothing wrong with that kid! All kids act that way when they’re his age.”

Unless you spend a COPIOUS amount around a special needs child, you don’t get the same effects of everyday life. There are times when my son does great in a public scenario, with other people, with other kids. The meltdowns could even be chopped up the “terrible twos”.

You see, I’ve had the joy of experiencing the terrible twos with a child without special needs and a special needs child. The difference is night and day. Yes, they both throw tantrums. With my daughter, though, I could usually entice her to change her behavior. My son, on the other hand, can have a meltdown for hours on end. If you try to stop it, you and he may get hurt. Even his favorite thing, potato chips, isn’t changing how he feels in that moment.

Don’t get me wrong, I don’t think anyone who says this means any harm. In fact, the “jolly” me would take it as a compliment. Because I’m super happy you think my kid can hang with the best of ‘em.

Unfortunately, the reality inside of me takes it as a “stab”. All of a sudden I’m questioning all of his doctors, specialists, and therapists. As well as my sanity for thinking anything could be wrong with him.

 

2. “He doesn’t look like he has anything wrong with him.”

You see a lot of people on Facebook complaining/joking about individuals using wheelchairs or handicap spaces at places like WalMart. They’re usually complaining because the person doesn’t look “handicapped”. In the real world, all special needs don’t come with a specific image attached to them.

My son is adorable. He’s bouncy, a little chunky, and has gorgeous curly dirty blonde hair and blue eyes. He can run and play like most kids. As well as dance, jump on trampolines, and swing on swing sets.

Behind his gorgeous, typical 2-year-old image lies many special needs we have to attend to every single day.

A special needs child doesn’t come with a “society approved” image. Just like you and I, they are all unique.

 

3. “Get a job so you’ll have more money to take care of yourself sometimes.”

A lot of my friends and family seem to forget I worked full-time jobs from the first day I graduated high school until my son was about 1 ½ years old. Their top advice is always for me to “get a job”. They say this can be my “free time”. A job can bring me more money. Then I can finally take care of myself!

As a parent of a special needs child, the reality in the scenario is not really there. A child with special needs requires a TON of supervision and around-the-clock care. Which, in most cases, most places aren’t equipped for.

Plus, we also have 3-4 therapy sessions a week. As well as at least ONE (usually 2-3) doctor or specialist appointment during the week. Which equals at least 4-5 days of the work week being filled with doctor and therapy appointments that legal guardians are acquired to attend.

I miss working. Work allowed me to actually converse with adults. Which is something I have rarely done in the past year. So, trust me when I say that I would love to be able to work right now.

But, I don’t know about you, most of my previous employers wouldn’t have been fond of me telling them my schedule could only consist of two days a week. Even then, they couldn’t be full days and those days I couldn’t even guarantee were really “available”.

 

4. “Just go get disability on him.”

Do you understand how easy I wish it was to just walk into the Social Security Office, tell them my son has special needs, and he be approved for disability? It’s not that easy.

We have filed for disability three times, at the recommendation of his birth hospital, pediatrician, specialists, AND therapists. We have been denied three times, too.

The process to apply for disability for a special needs child isn’t easy either. If you’re filing for an adult, you can do it all alone. Not for a child. You must do a lengthy online application. Then do pretty much the exact same application again by hand. As well as get all of your child’s therapists, teachers, doctors, specialists, etc. to fill out paperwork that isn’t less than 6 pages each. They’re busy people, ya’ll! They don’t have that paperwork ready overnight.

You also have to conduct an interview with someone from social security. The decision process can take up to a year! Some disability circumstances do guarantee quicker decision responses. We have been blessed that none of his diagnosis is in that severe category. We aren’t able to get that faster response.

For those who like to throw this out there, we’ve tried and we still haven’t given up hope.

 

5. “The doctor’s are just trying to get more money out of you with all these extra tests and referrals to other clinics.”

Yes, being a parent of a special needs child is costly. Therapy, office visits, and specialists aren’t free. Hey, if his pediatrician does get a bonus for referrals — I am okay with that. Because I’m not going to take my children to a pediatrician I don’t trust.

She wants to make money like the rest of us. Wouldn’t you participate in a bonus referral program at your job if it helped increase your take-home pay? Wouldn’t we all?!

That’s beside the point. The people making this statement don’t have one ounce of a medical background. They didn’t spend 8+ years earning a higher education to help save children’s lives. Not everyone is out to get your money, ya’ll!

I would rather spend the extra money to ensure my child is okay rather than create negative thoughts about their pediatrician. The same woman who has seen my children since my now 6-year-old was 2 weeks old.

Hit me up when you get a medical degree.

 

6. “I didn’t invite you because I know he can get overwhelming.”

My son can be super overwhelming. While it is more often than not, he has some very awesome moments. Awesome moments I can’t bring out if I don’t have the opportunity to bring him out.

Our friend circle has literally dissolved since the birth of our son. Not just our friend circle, our family circle, too. We’ve been invited to maybe two birthday parties. As far as us adults, nobody ever invites us anywhere anymore. We haven’t been out with friends since before I found out I was pregnant with our son.

We may not be able to always come due to the everyday struggles life throws at us. That doesn’t mean we don’t want to be at least included in possible upcoming plans. We were included before. Why not now?

He also needs to meet people a few times before getting comfortable with them. That may be why he freaks out when you attempt to act like you’ve seen him a gazillion times since he was born. He has no idea who you are.

 

7. “He just needs a good spanking and punishment. You’ll have him right under control.”

I’m not one of those moms who are against spankings if the crime deserves it. Ask my daughter. Since my son has a sensory processing disorder, spanking is a different experience for him. Instead of it being a “punishment” for him, he likes it.

That’s right, my son enjoys spankings. He actually will purposely do “no-no” things in front of me and then say “pop pop” before popping his own behind. We didn’t become aware of his enjoyment of it until a therapist noticed the behavior.

So, while I applaud you if spanking works for your family, it isn’t effective for ours.

 

8. “Aren’t you scared he’ll be picked on because he’ll be in special education classes at school?”

First, let me clarify, he may not need a total special education class in school. Special needs children are really being noticed by our school system. They are allowing them to stay in normal classes while still receiving the individual care they need. Without it being as obvious.

Of course, I assume he’ll be different from other students. I can only assume they will notice. Special needs child or not, I worry about any child being picked on. Children are relentless today when it comes to the feelings of their peers and elders. Of course, I worry.

But, I’ll never know how he may progress if I never give him the chance. I don’t want him to think he deserves any less of a chance than the next child. I’ll watch him closely, just as I do and will his older sister. That’s not just part of raising a special needs child. That’s part of being a parent.

 

9. “He’ll live with you your whole life. You’ll never get a break.”

Well, first of all, thanks for pointing out something I’m already very aware of. I already don’t get any breaks. That part of the whole situation really sucks.

You’re also right. He probably will need to live with us his entire life. We have been told this. I’m okay with that, his father is okay with that. When we signed up to be parents, we didn’t sign up for a kid we could make our way. We signed up for any kid God decided to bless us with. As well as every single responsibility that comes with caring for that child.

Instead of the reminder, maybe next time you could offer to babysit now. So, maybe I could, I don’t know, sleep longer than 3 hours.

 

10. “Take a vacation. You deserve it.”

Like all of the rest of the statements above, this is meant to be a caring and supportive statement. I appreciate this statement. It makes me happy that you see what I’m going through. You realize I deserve a break from the craziness of life.

In fact, I hear this statement a lot. Man, a beach with warm sand and breezy palm trees would be ideal right now. Then the reality of it all pops into my head. The packing, asking for help to care for our pets while we’re gone, and amount of time involved would really sock it to us.

We also can’t forget about the money involved. Living on one-income is difficult. Especially with two children, both with special needs, that carry private insurance. Saving up for a vacation can seem almost impossible.

I also can’t forget about rescheduling our son’s routine weekly appointments. Which would, more than likely, result in a double up of appointments when we returned home. As well as a double up on the gas spent going to and from appointments. As well a co-pays owed for each individual visit.

We want a vacation and we will get one. While your sentiment is appreciated, this just reminds us of how bad we really do need a vacation.

 

Regardless, being the parent of a special needs child has helped me grow.

I have learned so much through each struggle with both of my children. My patience has outgrown bounds I was never aware it had. I’m sure my heart is about 10xs its size. I’m so compassionate towards each and every parent and child out there now.

My list may seem like a list of “complaints” to many. Which, I guess you can call it for what it is. I’m okay with that. I think airing your frustrations is healthy and I encourage more parents to do it. We all know what happens when you hold stuff in.

Regardless of the “whine” of my pet peeves, I still am so appreciative of the comments and advice shared with me when it comes to my kids. It shows me you care and you thought of us.

Just like you, though, I’m only human and some days I can be Oscar the Grouch. So, maybe next time instead of giving me “tips” on how to make my life easier, offer to babysit for a few. That would really give me that “vacation” you’re talking about.

I’m sure, if you’re a parent, our list of pet peeve phrases is probably different. Whew, being human is a wonderful thing. We all have something unique about us. Share with us below what some of your pet peeves are when it comes to friends/family/stranger parenting advice, tips, tricks, and small talk.

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