Advocacy

15 Things Special Needs Families Want You To Know

According to the CDC, 15% of children within the ages of 3-17 suffer from one or more disability, ranging in various degrees of severity. This number however, is only including 7 diagnoses and is not considering children who are under age 2. Even without taking into account those factors, that’s still a lot of kids, yet people are uncomfortable about talking about special needs kids!

I’m no expert, and I can’t presume to know what every single mom feels nor can I be the spokesperson for the special needs community. I’m just sharing my own thoughts, along with the sentiments of other moms I have talked to along the way.

THINGS TO KNOW

1). We are not super heroes!

People will often tell me how amazing I am and they don’t know how I do it! Well, I’m definitely NOT a super hero and the only reason I “do it” is because I don’t have another choice. I’m just a mom, who just has to do what she has to do for her child. That’s what moms do.

2). Pity Stinks

The sad looks, the “oh poor you” – it’s terrible. My child is doing great things and is progressing every day! She is full of life and is the sweetest little girl. However, the “special needs” label immediately draws pity and sympathy as if my child were dying. Please don’t! Encouragement and prayers are always welcomed though!

3). We worry about the future – always

What will their life be like when they are older? What will happen to them when we (parents) are no longer here? How will people treat them in school and all the years beyond? There are so many uncertainties and it’s terrifying! This can cause us to sometimes be short with people, defensive, sensitive, stressed – whatever. Worry has a way of bring out not so pleasant traits because the range of emotions can be all over the place. Please be patient with us!

4). It’s better to ask than to stare

That’s pretty self-explanatory. I personally don’t mind people asking questions. Just please steer away from #2.

5). Watching other children hit milestones our child missed can be hard

It’s hard to see your child fall behind and the grief that comes with it can creep in from time to time. Every mom wants to see their kid be everything they were meant to be and watching the “could have been” can be difficult. You’d think that with time, moms would get used to being a “special needs mom”. As a matter of fact, it can get harder as the years go on because you see more dreams disappear and reality begins to set it.

6). Not all needs are the same.

 Disabilities range from physical, mental, behavioral, and a combination of various things. There are so many conditions that still don’t have names, causes or any cases studies to determine treatment. You can have 12 children with the same medical diagnosis, yet they will all range in variations and degrees. This is what makes it difficult, because there is NO one-size-fits-all care plan for special needs children even if they have the same diagnosis. Children range from very mild conditions to conditions that have terminal outcomes. Lastly, not all children “look disabled”.

7). It can be lonely.

It can be difficult to go out. For many moms, going out is just extremely rare or close to impossible. Sensory/Processing issues during a particular time of the day that can be difficult for certain children to cope with, as well as medically fragile children who have to carry tons of equipment just to leave the house. It just becomes easier to stay home where it’s safe. And if moms want to go out with friends, there’s just the pure exhaustion of busing your child to various appointments through the week that by the time the day is done, who really has time to go out, even when we really want and need adult interaction.

8). Asking for help is difficult

As a mom, who wants to ask for help? I know I never did when I had my first daughter. So as a special needs mom to my second, it’s even harder and most moms don’t even ask. It’s hard to burden someone to watch a special child if they are not familiar with their special needs and don’t understand their complexities. We don’t want to be a burden to anyone, so we choose to do everything ourselves even at the expense of exhaustion.

9). We want our kids treated like everyone else

Special need kids are treated differently. As parents, we just want our kids to be accepted and loved on like any other kid. We aspire to reach a level of “normalcy” and people and other kids interacting with our child(ren) means everything to us.

10). Friendships can be hard to maintain.

 It’s hard to keep a social life when there are so many things going on. And frankly, we don’t have time to track people down if they don’t choose to stick around. All the feelings and responsibilities can make us feel isolated but it’s amazing that situations like this reveals true friendships. The ones that can understand busy schedules and make an effort to keep in touch are friends worth keeping!

11). We become Dr. Mom

Special needs moms become fluent in medical terminology and are usually have to fight with medical insurances for things. I can’t begin to explain how many calls I’ve had to make to various places just to get things done for my daughter. I’m constantly asking questions and making sure that her team is up to date with everything that is going on, along with correcting them on what kind of treatment my daughter needs. It’s exhausting have to explain yourself and defend the fact that your daughter IS progressing and needs to continue in a particular therapy. You have to start investigating and finding resources on your own because doctors don’t have enough time to inform you or they don’t even have a clue of where to direct you. There are also other moms who have to administer several medications, keep track of specific diets, manage breathing equipment, ect. We become doctors, but without the paycheck or recognition.

12). It can be expensive.

Medical insurances don’t’ cover everything depending on family income. In a study published in the journal Pediatrics, Paul T. Shattuck, Ph.D., professor of social work at Washington University in St. Louis, recognized that out of pocket costs vary from state. According to the study done in 2008, California residents with special need children spend up to an additional $708.44 per year, which goes to therapies, medical equipment, co-pays, ect. Parents of children who are medically fragile can spend much more than that per year, not to mention any additional accommodations that are made for the child. Simply because an item is for disabled individuals, items go up astronomically, even if they are similar if not the same as items for “normal” individuals.

13). We don’t know what we are doing and the pressure is intense!

Like most moms, we have NO clue what we are doing half the time. However, for special needs mom it’s scary because we are scared that our child(ren) won’t progress because of something we are or not doing! The constant strive for doing everything perfect is a heavy burden as we are more than just moms, we are caregivers in charge of their progression!

14). We are scared we scare people off with our crazy life!!!

 When people ask how things are doing, it’s easier to respond with “great!” or “fine!” It’s hard to go into detail with people because it can be scary to think that we will be overwhelmed or bored which will scare them away.

15). There is absolutely nothing we wouldn’t do to take care of our children!

 We love them deeply and sometimes slightly defensive because we go through a lot! But the love we feel for our child is endless and we will stop at nothing to give them every opportunity to succeed. A mother’s love can fuel a normal human being to do the impossible.

Hope you’ve learned something new from reading this and that your perspective has grown. May you be more patient with the moms around you because everyone is fighting their own battles. Please feel free re-post! xoxoxoxox

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0 thoughts on “15 Things Special Needs Families Want You To Know

  1. Hi I’ve been following your blog for a few days, I love how real it is. I don’t know if you’ve mentioned it already and I missed it but what special needs does your daughter have? If you don’t mind me asking

    1. Thank you for following! It’s such a new experience so I’m glad I’m getting great feedback! I realized I haven’t even mentioned what she has, so I’m working on a blog to talk more in detail about it! Should be up in a few days. She is globally delayed, has mild cerebral palsy, microcephaly, ventriculomegaly and I am working to see if she has sensory processing disorder. It’s a lot but she’s doing new things each day 🙂

  2. I couldn’t have said any of these things better!! This is 100% accurate. How old is your daughter? I know you said you have other children, are they “normal” or do they have special needs as well? If they are normal what is the biggest challenge for you? Thank you for sharing.

    1. Gi will be 2 at the end of November! I do have another daughter who will be 4 at the end of this month and she is as typical as they come 🙂 I would have to say that my biggest challenge is just balancing time with both girls. We have to go to a lot of appointments and my oldest tags along with me. Life can become “all about Gi”, so I have to be very intentional of spending that personal time with my oldest and not letting her feel neglected, which is something I often fear.

      1. I understand how that can be. My oldest has CP and my youngest is typical. I find myself having dates with just him so that he doesn’t feel neglected as well. I’m thankful for having a strong support system to help me. But their is nothing like a mothers love.

  3. Love this post! I can totally relate, having a little boy with autism I get the usual “It isn’t that bad though..is it?” and “I can see he’s totally fine even with a diagnosis”. You never think that there is a shift in public perception until you have a child with special needs. xox

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