Do you understand what its like to be a mother of an Autistic child?

United States
December 5, 2008 7:49am CST
My 4 1/2 year old son has been reciently diagnosed with Autism. I knew he was always different when he was a baby but i never thought he would have Autism. So my question is how many parent have children nwith Autism and what is it like for you? Alex (my son) has really bad sensory issues. as soon as he steps outside his hand go over his ears for hours. Also, is your child potty trained? I mean Alex is going to be 5 and refuses to go potty. i alwasy knew motherhood would be hard but never this hard. is it just me or am i overreacting. don't get me wrong my son is a joy and very funny. He just learned to talk and it is a relief that i understand what he is saying. what do you do to relief your stress?
1 person likes this
9 responses
@Foxxee (3653)
• United States
11 Dec 08
I was confused & felt like everything was falling apart when I got my sons diagnoses, but I snapped out of that because Autism is a part of my son & I wouldn't want to change him. So I have learned to understand it more & accept it. We have good days & we have bad days, but in all honesty, we have more good days then those bad days. My son also has sensory problems... he can't cope with the sound of running water or background sounds. Also has sensory problems with certain touch & texture. My son is still young, hes turning 3 in a month & is going to a special school right now to help him learn to communicate. He doesn't talk & doesn't read facial expressions & also refuses to potty train. Sometimes my son seems as he is deaf... it's hard work to have him focus & I don't get much eye contact. He doesn't have melt downs that much, but he does have them due to communication & frustration due to not being able to talk. Keep in mind each child with Autism is different & some children with Autism might be potty trained by age 3 & others wont be until later or WAYYY later. The only hope I can give you is to just give it time. DOn't push it, when he is ready, he will let you know. You can also search the web or even youtube on how to potty train an Autistic child. Might be helpful for you. Also to answer your question.... I do get stressed at times, but I look at the other picture & realize that there are people out there that have lost a child or have a child that is dying & then I feel really blessed & count my lucky stars. So that helps me see things differently. & if I ever get alone time, I just relax & think of how wonderful life really is.... that always helps me.... if this doesn't work for you, maybe try finding a hobby to relax & smooth over the stress... good luck...
• United States
27 Dec 08
The arrival of speech around here was one that we still celebrate. Many of the sensory issues are still present but diminished considerably over the last five years partly through maturation and partly through intensive therapy. I can't see that far ahead into the future, but I remain hopeful. Best wishes
@rainbow (6763)
9 May 09
Oh Sweetie this is so hard and everyone always seems to have advice that doesn't help lol! I find the lack of affection and being ingored unless my son wants something very difficult at times, trying to remember he is still a toddler in his head can be difficult. Billy is now 9, we managed the toilet around 5 years. He still wets the bed and around the house if he is upset. If we go somewhere different we take him in every toilet we see just in case and that seems to lesson the chances of accidents on outings. Although he does like to get his hands in there so he has to be watched. All oyu can do is keep trying regulalry, I found if took him with me simply saying "your turn now,""Who's going first," etc it turned into a bit of a game and he joined in. Billy just got clear of speech therapy and my younger son (5 years) is now starting it. Make sure Alex gets any support available to help him with his sounds. I find that if I do craft, art, sewing, "me things" it helps. If it is warm I escape gardening or lay in the sun with a book. Involving him in what I am doing on the odd occasion he is interested is nice too. I have a friend that goes running or to the gym which is fine if you have childcare. If you feel really down you need to talk to someone, do not leave it too long as depressed parents with special kids is not a nice place to be. I'm sure Alex will do things when he is reagy and if he just got talking it's time to learn something new. Huggles!
@sacmom (14250)
• United States
8 Dec 08
Yes, I do. I am a mother of an autistic child. He's 11 years old and was diagnosed right before his 7th birthday, though my husband and I knew something wasn't quite right with him by the time he was 2. By the time he was 4 my husband and I were sure he was autistic, but family, friends, strangers, and even our son's doctor left us to believe that our son would just "grow out of it". And to top it off the doctor wouldn't give us a referral to see a specialist anyway, even when we practically begged for one. So we kept putting it off and with having another baby during this time it slowed us to pursue the matter. But we eventually got it done. Like your son, my son also covers his ears. He hates music, especially certain songs. Christmas songs are even worse. So I usually keep the radio off for his sake. But if we go somewhere and these songs are playing at these places he'll plug his ears until the song is over. He also does this when he sees a dog. It doesn't matter if it's large breed or small, he hates dogs (other than our own). With him being almost as big as I am it can be hard to keep him under control while were out somewhere. If it's a familiar place, like Wal-Mart, he might run off, so I run after him like a crazy mad woman. Meltdowns are even worse. And with doing this, it can really wear me out. My son's speech is very limited. Other than a few words that he can say pretty clearly, it is hard to understand what he is saying. We did learn a little sign language a few years ago to help with the communication barrier. It's been a great help, though we don't use ASL very often nowadays (I'd rather not get into that). One thing I love about autism is that my son is a very loving boy. Most kids his age don't want hugs, kisses, or cuddles from their parents. But he loves to give and receive them (except while he is having a meltdown). This is definitely the best part of having a special needs child. What do I do to relieve the stress? Sometimes I cry, sometime I hug my kids, sometimes I scream. It just depends on my mood, I guess. I just try to deal with it one day at a time so I don't go too crazy.
@irishidid (8721)
• United States
7 Dec 08
Although it has been a number of years since I have dealt with these issues, I well remember going through a lot of what you are. I know the potty training is frustrating, but stick with it. I found by keeping the potty chair handy helps. If he's in the living room, the potty chair should be too. Of course not when you have a houseful of people, but when it is quiet. My daughter wasn't fully trained until she was 5, so don't lose heart. You're in a situation where it isn't always possible to get away from the stress. Find whatever moments you can for yourself. Most importantly, keep away from negative people. I'm including other parents of autistic children. Here is the blog of a fellow mother with autistic children. She has great insight on the issues we face and often her blogs are funny and entertaining. http://whittereronautism.com/
@Momma_B (51)
• United States
6 Dec 08
I am so grateful that you started this discussion. My daughter was diagnosed with Autism just over a year ago. She is 9 years old. I struggled for years trying to get someone hear me. I knew from a infant that my child was not like other children but noone would listen. She is diagnosed with Aspergers Syndrome. While she is on what they call the high functioning end she still has many issues that Autistic children have. Loud noises really really bother her. Her social skills are really lacking. It is hard since she is the "high functioning end" other people look at her as a "Bad" child. Others can't always see that there is a issue so people think "oh your just babying her". Society can be so judgmental of others. I understand your struggle. I want you to know you are not alone! Many of us have been there in very place you are. We may not all have the exact same struggles but we all struggle with our fears and frustrations of being a mom of a "labeled" child. Oh and to comment on the potty training issue.. patience! It is a hard issue to overcome but it will get there eventually. (((HUGS))) Momma B
• United States
6 Dec 08
there is a publication that i get in the mail that has some of the most amazing things in it ranging from cancer cures to who really killed jfk. here is the address. there may be something for your son. SCOOPIFIED P.o.BOX 277 , Bellingham,WA.98227 i hope there may be something that can help you in those pages
• United States
6 Dec 08
I don't have an autistic child but I know and understand what it is to have one. I am a Sped teacher and I have met different kinds of children with special needs. Autistic kids mostly don't have social interactions, eye contact and has problems with communication therefore creating problems with your training them. Nevertheless they are intelligent children too. They can be potty trained with constant training, just don't give up. You must be one lucky mom to have such a kid because God has entrusted a special child , his child in your care. It would not be easy but every success you he achieves is twice as much your achievement. Good luck.
• United States
6 Dec 08
I completely know where your at right now. I'm going thorugh the same thing myself. My son is three and has had problems for years but they just diagnosed him with autism back in sept. He has very severe sensory issues to except his isn't sound his is his feeling and not being able to control himself almost like an adhd child. He can hardly talk and we've been working on potty training for months with no success he understands some of the concept but doesn't grasp going on the potty before he goes not after. I know that it gets very frustrating and it's almost impossible to leave them with anyone cause other people don't know how to handle them. I've always been a very patient person and I've found myself such a nervous wreck that I've actually had to be put on medicine recently for my nerves. I've been going through all the therapy's for awhile and i've read a bunch of the books. If theres any questions or any adive on techniques to help deal with certain situations that I might be able to help you with please don't hesitate to ask I know how hard it can be and, over time once you get little details that will help the situation it will get a little easier.
• United States
5 Dec 08
My heart broke when I found out my son was diagnosed with Autism. His doctor told me my son will probably never lead a normal life and probably never learn to drive and do normal things a person can do( which I don't believe). My son was diagnosed when he was 5. It is hard sometimes being a parent of a child with Autism. But on the most part my son is really sweet and caring and love's to give hugs But then sometimes he has very bad melt downs and anything small can set him off and he cry's and throws a massive fit up to 1-2 hours sometimes, I notice that this happens more when he's sick or when he's really tired and sleepy.My son also has problems sleeping sometimes like for months he can have regular sleeping hours like 10 pm-7 am in the morning then for no reason he can't sleep and he's awake all night and this usually happens for about a month or two until we work with him to get his days and night in order. Sometimes he only sleeps 3-4's a night then he's up and won't settle down. My son also has sensory issues and is highly sensitive to loud noises and also covers his ears when things get to be too much for him.Actually my son does have potty issues as well. He can use the bathroom and he usually does when he wants to, but he will not go by himself and he always wants me or his father to take him to the bathroom, sometimes he doesn't even tell us he has to go and he often has accidents. But honestly, this is a improvement because last year he would only do number 1 in the potty, now he will do both . We often have to ask him every 15 minutes if he has to go. My son wasn't even potty trained at age 5, he couldn't grasp the concept of potty training at 5 and when we tried to train him and sit him on the potty he would throw a HUGE fit and get off the potty quickly. Since he was 3 he had a fear of the potty chair and was scared of it. He has come a long way since then. It's not unusual at all for a autistic child to not be potty trained at pre-school age, just keep working with him and he will slowly come around to it. My son's Psychologist told me and my husband to praise him and give him a treat after he successfully uses the bathroom so we went to the dollar store and brought a bunch of toy cars and save them for awards for using the bathroom in the potty chair. It works. Since the world of Autism is new to you I can honestly say that it's hard to question your own actions and judgment sometimes regarding if you are reacting the right way as a parent to a child that is very different . I love my son and his autism is not a hard issue for me to handle anymore because I know within my heart he has every ability to become mainstream and not be this person his doctor said he would be. But let me tell you, outsiders who are ignorant about autistic children will give you problems sometimes. Like once in awhile my son will have a melt down in a store and people give dirty looks comments thinking your kid is a brat & etc. You have to be able to defend you child from the world when dealing with jerks like that, people don't understand that when a autistic child often gets too overly stimulated that they are pron to act up sometimes . But don't give up. Each year my son shows improvement, he's learning at his own pace, but the important thing is that he's learning and growing. My son now thinks he's a comedian and he's always making jokes and pulling pranks..LOL.. What help my son a lot with improving his speech was educational computer games and educational TV shows like sesame street when he was younger( and he still watches these show sometimes).He's slowly learning how to read now and he knows some words( my son just turned 7). I'm not sure if you have a child psychologist who has experience with autistic children, but if you don't have one I recommend finding a good one. They are very helpful with teaching you methods on how to handle a autistic child when he has meltdowns and gets violent( hitting & biting).My son is far from perfect but he has come a long way and I love him with every fiber of my being! If you have a hard time dealing with the stress call upon a family member to babysit Alex over night or for the day or even for a few hours so you can relax for awhile. Me and my husband do that sometimes when we get too stressed out, we call my sister or his grandmother to take Jr in for the night ... It works