“At about 16 mos. I called for an evaluation for Oliver and boy did all hell break loose! My husband came home shortly after the evaluators left to find me sitting in the middle of the dining room floor holding Oliver and crying”
Having a special needs child can put stress on your marriage. If can affect your relationships with extended family and friends. Being aware this can happen can help you be better prepared and be proactive.
One place parents have turned for support for around 2 decades now has been the internet. Over the years, however, social media has become more advanced, more mainstream, and while there are more parents of special needs children than ever before, there is not as much sharing of intimate stories of dealing with special needs. The exception being the bloggers and vloggers.
While there is already help for dealing with rude strangers (both part 1 and part 2) as the holidays approach, some of you may need some assurance that you are not alone if you need some support with dealing with friends or family members in regards to your children this holiday season.
Just as our children are all unique, so are our stories. Below are just a few examples (names omitted or changed) to assure you that whatever frustration you are going through you are not alone.
In addition to stories, below is an example of a letter you can customize and give out to family this holiday to friends or family to possibly make this holiday season a bit brighter and less stressful.
If you need support and someone to talk to, you really are never alone on the internet. You can join the Cherab support group on Facebook. If you want to post anonymously you can join the private Cherab support group on Yahoo, or join a subreddit on Reddit like r/Autism or r/Parenting
If you need someone to talk to, need help this holiday season, or any time, you can call toll-free Boystown 800 448 3000. And Your Life Your Voice is another resource from Boystown which is specifically for those who feel they want to end it all. If you are outside the US check this list for helplines.
“I have written before about hateful things my parents have said. I am now done with them.
A year ago we planned the vacay of a lifetime for our 2 kids aged 4 and 8 – Magic Kingdon on xmas. Great, eh? We scrimped, we saved, we cashed in flier miles. We are good to go. The kids are extatic.
I even ASKED my parents if this would be ok. They said “Your kids will be too old in a few years – go enjoy the Disney thing witjh them while you can”. This after years of dysfunctional Christmases at their place….
Today my 79 year old father called to tell that he “Hoped I had a F- ing &^*&&^%^%$ shi…..y rotten time there,. and thanks for the kick in the teeth and butt.” Then he hung up. So he is older. So he is possibly dememted.
I cannot imagine why ANYONE would ever say that to anyone, let alone their daughter and granddaughter. “I hope you have a horrible time?” What the hell is that all about? I am so totally disgusted………..
This on the heels of all their other blunders. I am so totally disgusted and done with both my parents.
Thanks for listening. Go love your kids and NEVER NEVER TREAT THEM LIKE THIS.”
“I am just having a rough week and wanted to vent. Nothing super major, just super frustrated and feeling so unsupported and so done with unaccepting / and sometimes just mean people.
My daughter was kicked out of daycare on Monday for ‘not acting normal.’ I was completely upfront with the daycare about her special needs. I don’t they believed me, because on week 5 (one day a week care, so this was her 5th day) she got overstimulated and hid under a highchair, covered her ears, and watched the other kids. I think it sounds like perfect coping for an overstimulated child. She didn’t flip out, throw things, bite, hit, ect. which she deffinetly has in the past. But they said it meant Jenna wasn’t ready and they kicked her out. All that after last week they said she was doing great and was probably ready for 2x a week. Guess its for the best, if they can’t accep that small thing, the world would have ended (in their opinion) if she had had one of her ‘real ‘ outbursts.
Someone at work overheard me talking about Jenna’s challenges and went off about how I am harming her by expecting so much and how I should just accept who she is and not mess with what is meant to be. OMG, as if my coworkers have any right to be so narrowminded and rude. I just walked away, i didn’t even have a response, she (the coworker) just doesn’t even deserve a response. As a side note that woman knows nothing about my daughter or me other than what she overheard (which was a story about how happy i am that therapy is helping.)
Lisa Geng’s post of helpful suggestions, flooded memories of an important experience in my life. I have never shared this with others before today. I remember as though it were yesterday, loving and adoring my child so much, that I grieved/feared for the outcome of his life. I seemed to have know one to turn to that truly understood the magnitude of my despair. The days became clouded and unfamiliar as I tried to work through this pain alone. My husband and relatives reached out to me, but I did not see them. I became so outraged, I wanted answers, I wanted certainty, I wanted to know that my precious little boy will be ok throughout life. Most of all I wanted to hear his sweet voice.
Our lives were greatly altered as we continued our long search for a specialist. My husband was just beginning his career. My personal plans for a career were on hold. My son became my main focus, his well-being was all that ever mattered. What I wanted could wait, it was most important that I be there for him. I was accountable for him and I was not going to make room for anything else in my life.
Though I did not realize it at that time, I had become very distressed, withdrawn from routine, from people, and from life. So withdrawn that out of concern for my well being, my husband took upon himself to seek out the best references, arranging a professional to speak with me about my heartache.
My husband has been in some sort of denial since Oliver was about 13 mos. old. (now 26 mos.) I had become concerned that he wasn’t saying MaMa or any other “M” sounds. All he would say was DaDa
over and over again. He would hold entire conversations using just the Da sound. He also wasn’t chewing enough and would very often choke. My younger son (if you could believe that I could have one any younger!) was born 9 weeks premature and was receiving feeding therapy, PT from Early Intervention and also had a visiting nurse. Having all of these professionals around all of the time drew even more attention to my older son’s delays.
Being new to all of this therapy stuff I started asking the therapists questions about my concerns for Oliver. I also began sharing my concerns with my husband and he would just shrug it off.
At about 16 mos. I called for an evaluation for Oliver and boy did all hell break loose! My husband came home shortly after the evaluators left to find me sitting in the middle of the dining room floor holding Oliver and crying. I had no idea there was so much going on with him! He tested horribly on everything except for fine motor skills. In most areas he tested at a 9 – 11 mo. level. He was 16 mos. old!! How could I have not known! I also have another son, who is 4 1/2 years older. It isn’t like I hadn’t had a child this age before.
Well, I told my husband what had become of the eval as best I could between the sobs and his response was horrible. He said that these people didn’t know what they were talking about, that they were just in it for the money and I should have told them to get out of my house! How ignorant could one man be!
Don’t get me wrong, I love my husband dearly but I had never seen him like this before. Was it because he thought they hurt me? Was it denial, stupid male ego or even lack of knowledge about developmental delays? I will probably never know. He still will not admit that the therapies are necessary but “tolerates” it pretty well because he knows that I would never have it any other way. He believes that Oliver will eventually talk well on his own and he will catch up before it is time to go to school. I guess it’s a form of “if I ignore it, it will go away.” I’m in this alone. (Except for this great site that I found in the last month) Thanks for listening. I tried to be as brief as I could but this gets so complicated.”
“I just want to scream because I live in a town of ignorant, stupid, mindless, thoughtless people, some of whom are even my “friends”.
Anyway, had lunch with one “friend” and I was telling her the exciting news about my daughter and her MFE (ETR -autism report) being so good!!
She said to me, “I was just talking about kids with special needs with someone”, pondered who for a minute or so, (my first indication that she was going to have to stick her foot in her mouth.) lol.. then said “oh it was a Doctor of a child with speech problems, and we were all discussing how we never saw any kids when we were in school with these problems.” and SHE said “well that was because they shipped them all off to schools for the mentally challenged”
My mouth was wide open, I wanted to say “so you think if my daughter grew up in our day she would be labeled mentally challenged and have to go to a school that was basically for children and adults with low skills and low functioning in life.”
I was frankly, thrown by this, I just didn’t expect my friend to wrongfully assume and reference that about my daughter. Then another friend basically told me that most the parents in the town I live in think I am in denial, that my daughter is severely autistic!!
I thought, Oh My God, people actually think my daughter can’t do anything that she is not capable of doing things than say their kids do, it make me very sad to hear this and knowing that my daughter functions like any 12 yo. just has trouble getting out what she wants to say and in the proper way.
I often think what do I do all this for when people will only view her the way they want to and based on first sight and impressions not knowing what she is capable of everyday. I know I wish I could have very thick skin and ignore it and for the most part I can with people I don’t associate with but when my so called “friends” are viewing her this way that just hurts.
My daughter, this morning, was not feeling good with a cough all night that basically kept us all up. At 7:15 this morning got herself out of bed got dressed, brushed her teeth and hair and was downstairs in 10 minutes. I was so tired that I stayed in bed for a little while longer but people don’t realize that she does this independently everyday. Homework at night is another accomplishment, she does everything all by herself with minimal help and she is doing grade level work!! But that does not matter to people, they don’t seem to believe it and they don’t care too.”
“When Tanner was 3 and nonverbal and had severe sensory meltdowns where he would scream cry with his eyes bulging out like someone was sticking pins in him.
He had a meltdown on the streets of New York at the Chelsea Piers and we made it back to my Aunt’s apartment building without anyone stopping us to see if we were kidnapping him. Tanner had his body stiffened up and arms reaching out screaming the only word he knew how to say at the time “Ma!” so it looked like we had just taken him from his mother when Glenn was carrying him but he did the same thing for me!
We got to the elevator and I asked Tanner, who was still crying, if he wanted to push the button to Aunt Leona’s floor and he just kept crying -so I told my older son Dakota he could push the button -and then Tanner screamed even louder. I told everyone to go out and Tanner and I would ride the elevator again so he could push the button. At this point Tanner had been crying for at least an hour but it seemed longer.
A woman walked on the elevator and ignored me and said “Honey did somebody hit you?” I was horrified as we never spank our children and said “No, nobody hit him! He wasn’t hit he has been upset and crying and wanted to push the button” She ignored me still and kneeling down to face level with Tanner she said “It’s OK honey you can tell me. Did somebody hit you” Tanner just kept crying and I realized that she thought I hit him and there was nothing I could say to convince her otherwise even though I tried.
I didn’t get mad at her however because I was aware that to the outside person it may have been abuse going on and she was doing a good thing out of her obvious love for the protection of children -my child. I don’t even know how else she could have done what she did. Back then there wasn’t as much awareness for sensory processing disorder meltdowns as there is today either. Apraxia is difficult enough, try to explain SPD when nobody knows what you are talking about!”
Dealing with relatives over the holidays
The following “letter to friends and relatives over the Holidays” which was written first hand from the perspective of a person with autism, but could easily be adapted for those dealing with apraxia, and/or sensory integration as well. Use this letter as a model to create one from your special child. This letter originally appeared in the holiday 1999 issue of the Autism Support and Advocacy Project for the purpose of it being sent to relatives, friends, and hosts of holiday gatherings that might need a crash course in what to expect from their guest with special needs.
A Note About the Holidays
“Dear Family and Friends”
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.
As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD).
Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn’t understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you–I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me and my parents will handle the situation the best way they know.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating: sight, smell, taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky — I literally cannot eat certain food as my sensory system and/or oral motor coordination are impaired.
Don’t be disappointed if mommy hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable! Temple Grandin, a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.
When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things — just please be patient with me and understanding of how I have to cope…mom and dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers in my face, flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this “perseverating” which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don’t want to come out of that comfortable place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my mom and dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!) It hurts my parents’ feelings to be criticized for being over-protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow tippy rules.
I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all as long as you’ll try to view the world through my eyes! ~Viki Gayhardt
Another version of this holiday letter
UGH! (I have to read this all over again later when I can pay better attention, but from what I gathered – UGH! So sorry. I get the family bit though… mine are a little more passive aggressive though – One by One – I’m done.