After we get married, move away and start our family, we lose touch with the rest of our family and friends. I know we did. Having kids changes everything. Having children with special needs changes thing even more. Your twice as busy, with appointments, agencies, therapy, etc. The real issue is though, you go to family functions and well, when your child has a behavior and can’t help that some of your family gives you the look, or tries to give advice. Well you end up leaving, feeling like a shit, sad and mad, Barry and I felt that so many times, so we thought the best was to just quit going. This again is lack of knowledge on others parts, and not wanting to “cause” a scene and hurting others. I use to get very angry and well I will admit I have a mouth and can fly off. And I did not want to do that, so the best was…stay home.. Looking back now I wish I had done things differently, we had children young which was a good plan as I could not have done what I all did now. Now that I am older, I wish I would have explained things more, but you get hurt and think screw it, I am so tired of it . It’s sad as then you grow away from family and friends and lose touch.
Don’t let that happen to you. You need to stand up for your children and explain to people why things happen. EDUCATION!! Yes that’s the way to go. We thought that by doing this we were saving ourselves from the hurt and sadness for ourselves and our children. We all want to be accepted, and in order for this you need to educate people about the disabilities your children might have. Only then can people learn to accept what it’s all about. And well if they don’t, oh well then you move on and forget about those who are that way. If people will not listen and wont take the time to understand, then that’s their loss not yours. I have run into this a few time over the years and learned to walk away from people like that, you don’t need them in your life if they choose not to understand.
Life for sure is a journey and its your attitude that helps make that journey special. I know that back then I told my Mom, I am NEVER going to a family function again, it hurts that my own family are giving me the looks and I told her I was done with it. Well if I would have just not gotten so angry and just maybe explained it thinks might have been different, even got up in front of all the family and did a presentation on Autism and helped them to understand, (that family function is big with a lot of people). Back then I was too quick to get pissed off…LOL.. its amazing what age can do. Oh I have patience alright for my children, but i never had the patience for people who are ignorant in the lack of understanding. I have never given up on my children, just gave up on the trying to explain everything. I will say there is A LOT more information out there now than there was 18 years ago. And I am now a very HUGE advocate for my children and fight for what is needed 🙂 You have to as tiring as it is, you fight the fight for there lives to be as normal as possible.
My advice is to don’t give up and explain to people why this happens, education is the key, it might save you from feeling that you’re not welcomed into your family, or that your family does not love or respect you anymore. People do not realize what a look or a few words can do to someone, especially when they deal with a lot in life and are looking for acceptance. I got to the point I actually carried around cards with me in my purse when the kids were little that EXPLAINED WHY they were having a tantrum when we where out in public. And let me tell you, when someone was looking at us in that plan discussing way, without a word, I would whip out a card and hand it to them, let just say the person who received the card usually did not know what to say and it was a realization that this was NOT because of “bad parenting” this child really could not help it. And I found out years later it was because of a visually sensory overload disorder, very common in children with Autism.
I firmly believe that educating people is the way, so then no one feels hurt and not accepted. I will leave you with some information I have shared over the years to people to help them understand our children.
Kids Who Might Need Extra Help
Isn’t every kid special? We think so, but what do we mean when we say “kids with special needs”? This means any kid who might need extra help because of a medical, emotional, or learning problem. These kids have special needs because they might need medicine, therapy, or extra help in school — stuff other kids don’t typically need or only need once in a while.
Maybe you know of kids in your school who need a wheelchair or use braces when they walk. Those kids have special needs. They not only need the equipment that helps them get around, but they might need to have ramps or elevators available. They also might need to get a special bus to school — one that lifts them up into the bus so they don’t have to get up the steps.
Kids who have an illness, such as epilepsy, diabetes, or cerebral palsy, would have special needs, too. They might need medicine or other help as they go about their daily activities. Kids with sight problems might need Braille books to read. Kids with hearing or speech problems would have special needs, too. A kid who has hearing trouble might need hearing aids to hear and speech training, too, since it can be hard to say words correctly when you can’t hear very well.
Kids with learning problems often have special needs. Kids with Down syndrome might go to a regular school and might even be in your class. But they have special needs when it comes to learning, so an aide (someone to help) might come with them to class.
You might be able to spot a few kids with special needs, but you probably don’t notice all of them. A kid could have a problem that isn’t noticeable unless you know the person well. For instance, someone could have trouble with anxiety (worry), but you wouldn’t know it unless the kid told you about it. Privately, their parents, teachers, and counselors may be working to help them with this problem.
What’s Life Like for a Special Needs Kid?
Life can be extra-challenging for a kid with special needs. It might be harder to do normal stuff — like learning to read or, if a person has physical handicaps, just getting around school or the mall. The good news is that parents, doctors, nurses, therapists, teachers, and others can help. The goal is to help kids be as independent as possible.
Other kids also can be a big help. How? By being a friend. Kids who use a wheelchair or have lots of health problems want friends just like you do. But meeting people and making friends can be tough. Some kids might tease them or make fun of them. Be sure to tell a teacher if you see someone being bullied or teased. That’s a very lonely feeling.
Also try to be helpful if you know someone with special needs. You might carry the person’s books or do something as simple as asking him or her to join you and your friends at lunch. It’s also important not to be “overly helpful” when no help is needed. Why? Because just like you, kids with special needs like to be as independent as they can be.
Being friendly to kids with special needs is one of the best ways to be helpful. As you get to know them, they may help you understand what it’s like to be in their shoes. And you’ll be helping fill a very special need, one that everybody has — the need for good friends.
What Does Autism Mean?
Autism (say: aw-tih-zum) causes kids to experience the world differently from the way most other kids do. It’s hard for kids with autism to talk with other people and express themselves using words. Kids who have autism usually keep to themselves and many can’t communicate without special help.
They also may react to what’s going on around them in unusual ways. Normal sounds may really bother someone with autism — so much so that the person covers his or her ears. Being touched, even in a gentle way, may feel uncomfortable.
Kids with autism often can’t make connections that other kids make easily. For example, when someone smiles, you know the smiling person is happy or being friendly. But a kid with autism may have trouble connecting that smile with the person’s happy feelings.
A kid who has autism also has trouble linking words to their meanings. Imagine trying to understand what your mom is saying if you didn’t know what her words really mean. It is doubly frustrating then if a kid can’t come up with the right words to express his or her own thoughts.
Autism causes kids to act in unusual ways. They might flap their hands, say certain words over and over, have temper tantrums, or play only with one particular toy. Most kids with autism don’t like changes in routines. They like to stay on a schedule that is always the same. They also may insist that their toys or other objects be arranged a certain way and get upset if these items are moved or disturbed.
If someone has autism, his or her brain has trouble with an important job: making sense of the world. Every day, your brain interprets the sights, sounds, smells, and other sensations that you experience. If your brain couldn’t help you understand these things, you would have trouble functioning, talking, going to school, and doing other everyday stuff. Kids can be mildly affected by autism, so that they only have a little trouble in life, or they can be very affected, so that they need a lot of help.
What Causes Autism?
Autism affects about 1 in every 150 kids, but no one knows what causes it. Some scientists think that some kids might be more likely to get autism because it or similar disorders run in their families. Knowing the exact cause of autism is hard because the human brain is very complicated.
The brain contains over 100 billion nerve cells called neurons (say: nur-ahns). Each neuron may have hundreds or thousands of connections that carry messages to other nerve cells in the brain and body. The connections and the chemical messengers they send (called neurotransmitters) let the neurons that help you see, feel, move, remember, and work together as they should.
For some reason, some of the cells and connections in the brain of a kid with autism — especially those that affect communication, emotions, and senses — don’t develop properly or get damaged. Scientists are still trying to understand how and why this happens
So in close look back on our life together…the rough roads..the easy roads..the hard work…we worked so hard to get to were we are today and still are …it has not been easy..but who said life was…you enjoy the road we have travel and no matter how hard it gets you will get through it…married at 19, high school sweethearts 🙂 , parents of special needs twins at 20…parent of 3 at 23…never complained about that… finding out our 3rd child has special needs as well…it was the cards we got dealt.. you can’t change what you are dealt with in life..but you can certainly be strong and go through it…no matter how hard things got we managed to somehow get through it….the anger, the tears, the laughter…and it only made us stronger in the end… yes we have made mistakes but we forgave each other and moved on… everyone makes them in life no one is perfect….the friends we have had… the friends we have gained….the ones that are truly here for us and don’t look at our kids as “bad”…who think they are awesome and see them as we do …..the realization we seen when we moved away……19 yrs later and happily married ….we are stronger and still in love… the rough times made us stronger and wiser…we are happy were we are now and would not give it up for no one and nothing…nothing we ever did was not worth it….everything we have been through has been worth it as the outcome is ………………. TOTALLY AWESOME. We were once told that parents of special need children have a high divorce statistic…. well we refuse to be in that category 🙂
Have an awesome Day everyone 🙂