Toughest family visit. Ever. (Very long)

For those following my few posts - we're finally having our son evaluated this week and we're pretty sure we're heading towards an ASD diagnosis.

We go to NY every few months to visit my in-laws and see the rest of DH's family and our friends who still live in the area. Our visits have always been somewhat stressful because DS thrives on his little schedule and we've had to really bend it when we're down because MIL likes to eat late and have 'family events' start at around the time DS goes to bed.

Anyway, this visit was very different. When we arrived at my FIL's house, it was already set up for his New Year's Eve party (chairs were set up all around the house. All the tables were covered with cloths. The buffet that usually has pictures on it had been turned into the bar) DS FLIPPED OUT. He refused to go in. He screamed and carried on and took us back to the car and the only time he was quiet was when he was riding around in the car. Then when we finally brought him in the house, screaming, he finally went upstairs to the room where we usually stay in. This was the ONLY room that didn't change at all and it was the ONLY room he would stay in all weekend. He wouldn't come out without a tantrum.

MIL told us we were 'spoiling' him by letting him do what he wanted and stay in the room. She kept making comments when he'd melt down like, "Oh Stop it. C'mon now. You're being insane". I'm sorry but when my son is out of his element, to keep him calm - if we need to stay in one room and let him open and close the same door 100 times, that's what I'm going to let him do.

We had our family christmas crammed in this 8 x 12 room because DS wouldn't leave.

After the New Year's party was over and all the chairs had returned to their regular spots and the house looked somewhat like it used to - then and ONLY then did DS come down and not have a freak out.

It's hard to explain to people to not take it personally when he has his little meltdowns. It's all about the environment but he can't communicate that to anyone but us. DH and I knew immediately why he was flipping out but to the in-laws, they were mystified. It's so frustrating.

Any advice on how to handle family who constantly 2nd guesses your choices with your children with special needs?

Message edited 1/3/2011 8:07:25 PM.

Re: Toughest family visit. Ever. (Very long)

no advice, just

Re: Toughest family visit. Ever. (Very long)

first of all, I'm so sorry that your visit seemed to be a tough one.

Most of my visits to my family in LI tend to be for parties and large family gatherings. At age 2 this was a nightmare. People perceived my son as being a crying brat because it was just overload for him. And of course I wasn't about to explain to every single person what the problem was.

My advice is to do just what you and DH did, make sure that you provide an environment for your son that causes the lease amount of stress for him (and you!). Ignore what anyone else has to say. As you start services they're going to sensitize him to things like this (larger gatherings, the unfamiliar, etc). He may learn to adapt to it once he has some training/therapy in organizing his senses.

My son is now 3.5. He does really great with family functions relatively speaking. But I still have to make sure he has an outlet at all times. A place where the chaos doesn't exist if he needs it. Most times he doesn't. Somestimes he does. Trust me, somtimes I do too. I spent Thanksgiving dinner eating dinner with him on a folding chair in my SIL's bedroom while everyone else ate at the table. It was too much for him. And that's ok.

Family members don't understand. Especially when they don't know what is going on. I still have this one family member who reminds me everytime I see her how my son used to be a big cry baby. As if I don't remember it or something.

You can DH are going to be a team with this. And you might disagree sometimes and get frustrated other times but the most important thing is that you have DS's best interest in mind. And there is a difference between sheltering and being overprotective versus understanding his needs and helping him cope with his own feelings and senses.

Re: Toughest family visit. Ever. (Very long)

I'm sorry! I know how hard it can be.

What I do now is host all holidays so that my children are at home. It makes life easier for us, them and all others involved.

I spent years feeling heartbroken when I was told:

You spoiling her.
You are paying too much attention.
You are not paying enough attention.
You need to be more strict.
You need to spank.
She needs to learn that the world doesn't revolve around her.
Just ignore her behavior and she will stop.
You should read this book on discipline..

Screw them all!! Seriously! You need to just stay close to home and chill out as much as possible while you go through the eval process. Then, when it is over and done, know that you will get him and you the help that is needed.

Don't force him to do things right now that you know won't work out- if at all possible.

If you need a phrase for uncomfortable situations, feel free to borrow mine...
"Thank you for the advice, I will look into that."


Hang in there!

Re: Toughest family visit. Ever. (Very long)

Posted by avamamma

I'm sorry! I know how hard it can be.

What I do now is host all holidays so that my children are at home. It makes life easier for us, them and all others involved.

I spent years feeling heartbroken when I was told:

You spoiling her.
You are paying too much attention.
You are not paying enough attention.
You need to be more strict.
You need to spank.
She needs to learn that the world doesn't revolve around her.
Just ignore her behavior and she will stop.
You should read this book on discipline..

Screw them all!! Seriously! You need to just stay close to home and chill out as much as possible while you go through the eval process. Then, when it is over and done, know that you will get him and you the help that is needed.

Don't force him to do things right now that you know won't work out- if at all possible.

If you need a phrase for uncomfortable situations, feel free to borrow mine...
"Thank you for the advice, I will look into that."


Hang in there!

Re: Toughest family visit. Ever. (Very long)

i can totally understand where you are coming from. my ILs were the exact same way until we got an official diagnosis, and even then they were clueless... but i can tell you know they totally understand and have done some extensive research and have spoken to other people whose grandchildren are on the spectrum and it has helped them ALOT and this is coming from a family who keeps everything on the hush hush, but that is a whole other story i wont get into.

you did the right thing and you handled it and you made it through the weekend.. i am sure you wanted to drink yourself silly, but you did it and that is what counts.

i don't believe in sheltering AJ, or keeping him from functions because he wont be able to handle them.. i would rather him get out and freak out and if we need to, leave if it really becomes bad, but part of our therapy was community and de-sensitizing him.

every child is different and you will start to see what things calm him in new environments... for us it was the iTouch. hes had one since he was 2.

in the begining it was very hard... esp in small spaces.. but he has gotten so much better... it just sucks when i forget his iTouch at home

when people look at me funny or say something in regards to a meltdown (if he has them in a public place) i say.. "what you never seen a mother beat her child?" and yes that shuts them up real quick.

but seriously... take what they say with a grain of salt... and if they keep at it, use the whole, if you cant understand that he is different and does not function the way a typical child functions than maybe he is better off without you.

and i have said that to my ILs...

hang in there, it does get better

PS: sorry for rambling

Re: Toughest family visit. Ever. (Very long)

I don't think anyone really understands until they are ready to hear or listen.

My mom only realized what I was saying by lack of interaction, no eye contact when she came last year when DS was 2.5 yo. She saw. She realized how different DS is. What it means to have refusing food. Gagging at the sight of food. Stimming, flapping when excited. Non verbal...like yes... non verbal. He will only tell you what he wants by taking your hand and bringing you to what he wants. Does not say yes or no. Will not look at you. Will not play with you. She saw the lack of engagement. That's when she got it.

It's tough! It is. You will find your friends through this process. But in the end, it's hard to deal with. The important people will try to understand. They will be patient. They will love DS regardless. They won't question you. How many? A handsful in your family and friends.

Honestly you will talk to other parents with kids with special needs and you will get an instant connection. They GET IT!!!! It's almost a relief to talk to them. You don't have to keep justifying, explaining, etc... That gets exhausting.

Recently, I met one of DH' cousin. She has a 11-12 yo autist child. I assume we got invited because she wanted to meet DS. The 2 daughters of the cousin's sister work in the field. We talked and you know what. Even those 2 girls did not get it. DH's cousin said 1 thing, I knew what she meant, same when I talked. It was just natural to talk. One of the daughters said she understood but she did not. She does not live it 24/7.

I find the challenge to be bigger now that DS is getting older. The difference between him and typical kids is getting more and more obvious. You can see a 2.5 yo being "behind" in language but now at 3.5 yo and still saying "ahh or ahhee" is weird. I started to get the looks. But it is what it is. I cannot do anything about it.

Re: Toughest family visit. Ever. (Very long)

I agree with EVERYONE's post. My MIL and FIL were the same way. It took them YEARS to finally realize and accept Christopher's diagnosis. When he was first diagnosed they thought everyone was wrong, and that my DH didnt start talking till he was 3 or 4. My dad still makes commnents till this day ,"he will grow out of it".
Know one truly understands what we go through, they all can say "oh, I can imagine"...well No you cannot, is my response now.
My son does good with fanily functions, but like Lisa mentioned above, sometimes he gets too excited or it can get to be a bit too much, and we take him to a safe haven place in the house where he can do his own thing.

Re: Toughest family visit. Ever. (Very long)

Re: Toughest family visit. Ever. (Very long)

Sending It's sad how people can be so ignorant sometimes. I'm very sorry you had to experience that with your family. Do what works for you and your DS and nevermind what others think.

Re: Toughest family visit. Ever. (Very long)

It is so hard for some people to understand. It helped me to do some research and pass it along to some of my family. I also explained reasons my son would act the way he was acting. That helped to open their eyes and see that he wasn't just throwing a temper tantrum to be a brat. He was overwhelmed by all the people, noise, and other stuff going on. I think it's great that you are already able to figure out things that will make it more comfortable for your dc. Hopefully in time they will come to understand.

Re: Toughest family visit. Ever. (Very long)

I was 9 when my brother was diagnosed (he was 2), so I remember a lot of his early pre-EI behaviors fairly vividly. Unfortunately not everyone is going to understand. My grandfather insisted he was fine. My grandmother, on the other hand, knew he had autism before anyone because she had caught a show about it a couple of days before and caught him doing a lot of the behaviors (I think the walking on the tops of his feet was the moment). But eventually family understood as time went on, and celebrated his improvements and milestones with the rest of us. He is 20 now and going for his bachelor's in Graphic Design. My mom was told he wouldn't make it past 2nd grade in an inclusion class (keep in mind this was the 1990's). EI helped him TREMENDOUSLY.

I watched my parents endure a lot. I saw it from a sibling's perspective, but my mother shared a lot with me. They had friends distance themselves from my parents because they didn't know how to handle it. My mom had to make A LOT of adjustments to get the tantrums under control. New shoes were a big challenge. She would wait until he fell asleep first. As he got older, she would make a list of where they were going. If she had to make a quick stop somewhere and it wasn't on the list, she had to write it in. That usually stopped the oncoming tantrum.

I know it's tough right now. But it will get better. Eventually your family will understand. And if they don't, it's their problem. If you need any advice, feel free to FM me and I'll pass info along to my mom.

Re: Toughest family visit. Ever. (Very long)

Thank you so much for all the responses. It's definitely tough being questioned as a parent when you're already questioning so much yourself about your child. It was a tough weekend but alot of your responses I am going to take with me the next time we go down to NY.

Thanks so much again!

Re: Toughest family visit. Ever. (Very long)

People defintly have to try to be more understanding. My niece has made such strides and I could not be more proud of her. It has definitly opened my eyes to other children though. If I am at a store now and I see a child having a major meltdown, I never pass judgment just because you never know what any child's situation is. My niece is really teaching me so much, it's incredible!

Re: Toughest family visit. Ever. (Very long)

You have to do what's best for your child, and only you know what's best. Our children have metdowns because they are not able to verbalize how they feel. An outsider may look at what you do for them as spoiling but they dont know the reason behind it. Too many people are too quick to pass judegements without knowing the facts. Dont ever question that you are doing the best for your child. Whatever works for him is what counts...not what others think.