Difficult to cope

Post Reply New Topic

Hey everyone, I am new and I have 2.5 years son. He is not diagnosed but I think he is in Autism spectrum. At the moment he is non verbal. He has less then 4 words he uses with purpose and other is just random things he says with no meaning to it. He still does not eat by himself (therefore I think he knows, how to do it, but chooses not to). He is not potty trained and just recently started to inform us if he needs to be changed - with sound nene, which means nappy time. He also just started to understand what you tell him, but only when you say words separately. He understand simple words such us drink, shoes, cookie, run, car. He can stack blocks together and started to do puzzles by himself. He points only close objects and his eye contact is limited. Usual he brings toys to us, if he wants to play. He like to be with me and always holds my hand. His stimming is clap our hands. It can happen with no end and he seems to enjoy it very much, he even has some sort of attachment to my hands and communicates with me that way. He learned to show my eyes, nose and mouth and can say eyes in his own language.
I feel helpless and depressed most of the time, because it takes so much time to teach him something and he started having tantrums. If he doesn't get his way, he starts to scream and cry ... it is very upsetting in outside world, when people stare and I am so sad all the time. He is such a lovely boy and I love him to bits, but it is so sad that he can not see our world the same way as I do.
Can someone remember same problems with their children? Did they improve to be able to lead more normal life ?

Welcome to WP! It can be difficult to cope, so know that you are not alone. One thing that came to my mind as I read your post was a suggestion to try teaching him some simple sign language. I can't speak from experience on this one but after watching many other kids, I really wish I had done this with mine. If he is having a tough time verbalizing, he might have an easier time signing. He is still very young so it is not possible to predict what trajectory his development might take but the fact that you are on it at this age speaks volumes for his potential to succeed in life. Are you in the States? If so, you are pretty close to falling under the IDEA laws - at 3 y.o., kids become the responsibility, if you will, of the local school district. You should be able to take him and have him evaluated by school district staff when he turns 3 if you don't go elsewhere for an evaluation before that.

At 2.5 with my ASD son we were no where close to potty training. It was well past his 3rd birthday before we got that down and I know others here have told of it taking much longer than that. Frustrating for sure but chances are good that he will get there soon.

I would encourage you to bring your concerns to your p doc and see if you can get an evaluation rolling. Knowing for sure what's going on with him can really help you cope. The feelings can be overwhelming because we get so scared for our little ones but with the right info from your doc and maybe other therapists if they are needed, you can get on a track where you are moving forward. This may help you process your fear and sadness.

Take care!

I can't speak for the non verbal issue myself. My daughter was rambling on in her own language since she discovered how to coo and gah. She never really stopped "talking" in her own language til she was around other kids at 4-5. She did however use our words when she wanted something. She also parroted a lot of words. I think she just really really liked to talk.

What I can say is that the depression is not uncommon amongst us parents. The best thing to do is to get started on finding out what services are available to him. In the SouthEast Kansas area we had a program called GreenTree, in Central Texas it was called Birth to Three. These type of programs are state funded (in the US) and help parents to access their children and find out if they have physical and/or mental delays. If there are delays they help you to get into therapy and direct you to the right type of doctors. If you aren't able to find a program in your local area, try going to Child Protective Services, Social and Rehabilitation Services or the hospital. These places will know of what programs are available and what services you and your child are available for.

Sometimes you just have to know that you aren't stuck and lost to feel better about your situation. However if you are still feeling depressed after getting help for your child, consider getting help for yourself as well. There is no shame in taking anti-depressants if you need them. Sometimes all you need is a change of hormone balance to make things seem better.

As for your child having a more normal life, well that will happen. Don't worry. Even parents with neuro-typical children fear for their kids future.

Best of luck,
Jen

Lyrute, what country/part of the country do you live in? It sounds to me like your child could benefit from speech therapy, which is offered in most places for kids your child's age.

has some problems,may be some delay, may be goes during the process of growing up and may be not .but dont wait .start dealing with it now at that young age, in case the delay is of the kind that requires intervention .no professional could say for sure his dignosis. current approaches in teaching children with delays, is to address the things he is delayed in ,relative to other kids his age,and not stop too much at what diagnosis he has. definitely look for early intervention such as professional schools dealing with developmental delays ,and go on from there ,and apply the techniques at home according to your child abilities and interests.this early intervention has done wonders with my 3 year old daughter who started at 2.the name of the game is start now and be patient and REPEAT ,REPEAT AND ALWAYS REPEAT what you are teaching ,this is the only way to development.

Its good that he is listening and responding to you, at that age my daughter did not respond to her name much less a question like "Cookie?"
Also good that he is playing with toys appropriately and he is pointing and using some words appropriately. You say his stimming is clapping "our" hands. Does this mean he likes to hold your hands and clap them or does he like "high five" (clap your and his hands together)?

Sometimes boys do tend to speak slower than girls do but he should be using more words than he is so I would have him evaluated by a speech therapist and also alert his doctor to your concerns.
Sometimes the "tantrums"...meltdowns at that age are due to frustration that he is unable to make you understand what he wants. It may not seem that he is trying to ask you for something but he may want something and become frustrated that he does not know how to ask.....if that makes sense?

You would be amazed what early intervention can do for your child so the earlier you get the ball rolling the better. The best thing to do would be see your doctor. If your clinic or hospital has a huge waiting list for evaluations, dont wait, find your local Regional Center if you are in the US. If you are in another country maybe find someone on here who knows how the system works. The sooner he is diagnosed the sooner you can get him going.

Id like to show you how amazing early intervention therapy is. My daughter was older than your son (about 3 months away from her 3rd birthday). She did not speak, she made animal noises and spend all day spinning, mouthing the TV and lining up her animal toys. She did not point, wave or look at you. She did not respond to us, as I mentioned. She would laugh at seemingly odd things like the sun on the floor and flap when she was excited (still does this from time to time and spins when she needs to release stress we are in the process of building a sensory room for her and my son to help with their stress as I am ill and its been hard on them). We could get her to laugh if we tickled her and we found that she liked things that most babies didnt like such as being held upside down by her legs and swung back and forth (my nutty older son did this and scared me half to death but she LOVED it).

She was originally diagnosed severely Autistic. I remember her speech evaluation and the therapist basically ignored the other kids and just stared at Maddy with a very concerned look on her face so I finally just said it "could this be autism?"....The speech pathologist face sort of lit up like I let her off the hook or something. She said "Yes, I would definitely look in that direction, Id definitely go there". I basically already knew but It helped to have the professional say...."yes that is probably it". She was also the one who send me to the Regional Center and we got Maddy diagnosed and we had in home therapy going within the month.....right before she started school at age 3 she said "Mommy".

I want you to look at her videos and maybe they will make you feel a bit better. I started making them when she just turned 5 and she will be 7 in April. Look under Aspiemom42 and you will find her videos. I have also made made some recent videos. One is a tribute to my oldest son who died in August, he loved his little sister! I just want you to see how far she has come with acceptance and with a ton of therapy....she had in home therapy three days a week for two and a half hours a day. She had a specialized autism program that started in school at age 3 and she had speech and OT once a week through our insurance (she also got this through the in home TEACCH therapy and school).

We also took her to a special swimming program. A young guy named Zack was her first teacher, he was amazing with her. I told him we didnt know what was wrong but she did not speak, we thought she either had autism or a hearing problem. It was her first therapy and I recommend swimming as therapy for any special needs child. She is swimming with her school on Tuesdays and she is so excited (also she gets therapy on Tuesday afternoon so thats exciting too). Anyway, I will say that early intervention is not always as successful as it was with my daughter but without it I have no doubt her language skills would be far worse.

Since we moved to France she is getting a lot of therapy and they are doing well teaching her French....I know there is a link to a documentary about France being in the dark ages but where we are (a small town outside Lyon) they use the TEACCH method (same as the US) and they are awesome with my kids. My 9 year old son who has Asperger's like me was bullied in the pubic school so they put him in a specialized school for kids with Aspergers, Autism and LD's as he has dyslexia as well. He is reading and thanks to our spending a huge amount of money when we lived in California and put him in a French immersion school (my husband is French) he is fluent in both languages and is very good at translating for me and he and even Maddy are helping me learn French words. They both spend several hours a week in the therapy center, they have outings and camps. They have an awesome sensory room there as well. We have been donating some things like chewies and weighted blankets (the kids there love the blankets so I found a pattern online and they found someone to sew the blankets as they are not easy to find here and they are very overpriced).

Maddy may on be able to communicate as a typical child would and she probably never will but she has a photogenic memory, perfect pitch and she is a beautiful, funny, highly intelligent little girl. I would not have her any other way!

liloleme - he likes to clap my hands - clap my hands and his hands together. Thank you very much for your responses everybody. I already get help from GP, and Children's development clinic. We had speech therapy sessions, but they more just played with him. Now he was referred to pre-school speech therapist. Still waiting for the appointment... I do everything to help him ant teach him, but sometimes I get tired and sad. Like I was yesterday. Today I am much better...
I hope my son will get better at least will be able to understand what I tell him and respond in some way - it would be so easier for him to live. Sometimes I think that speech can come later, but most importantly he needs to understand this world.
He is also very skinny. All the time he eats a lot, but doesn't gain weight. Do you know what it might be? Did any of you have similar problems? He had blood test - still waiting for test results....

So, are you only going through the school, or have you asked your GP to refer you for an assessment? A specialist may also offer therapy in combination with the school.

A lot of speech therapy is like directed play; they get in there and help the kids use language for what they want, instead of just grabbing stuff, for instance. This helps not only with the words, but with the pragmatic speech (social/nonverbal communication; often an issue with kids on the spectrum) If your son isn't speaking much, I've heard of success with PECS (Picture Exchange Communication System) There's the official version here http://www.pecs.org.uk/ but basically it involves using clipart or photos to teach your child words.

As for the melting down when you get home, it could be a number of things. Many parents notice worse behavior at home than at school, because home is a "safe" place where kids know people will still love them if they fall apart - maybe it's something like that. For that matter, it could be something else - make a note of what exactly is going on when he melts down, and what happens when he stops, and look for patterns.

Good book on helping your child learn to communicate: It Takes Two to Talk

The very most important thing you must always remember is that things will get better. If there's no dx yet, I assume no treatment/intervention yet, correct? Once you navigate all your options and get some therapies going, you will be happy and so will your baby.