I am having a rough time

Hey guys I need some support and am not ready to tell some family yet. 

Friday my youngest son who will be four in March was diagnosed with Autism. To be honest the diagnoses wasn't a surprise to me. I have known something wasn't right with his development really early on. I have just been going through a whole range of emotions that it feels so overwhelming. 

I know its not the end of the world but its hard. I feel helpless because I can't fix this for him. I cant kiss it and make it better. I can't give him a medicine and in a week he will be better. 

I know therapy and the right  schools can help him. But I am so worried. Will he eventually be able to have a conversation? What does his future hold?

Another thing I worry about is my daughter. In the next few weeks we are going to be so busy with arranging appointments for him what about her? How do I keep her from feeling like she doesn't matter? I dont want her to feel like our whole focus is on him. 

And please I feel like I am processing so much that I am drowning. I don't know where to start or what to do. I just try to keep busy. I just need to know that despite how bad it hurts this will get to a new normal for us. 

I don't know what to say as I know so little about autism, but I am learning. My niece's son was just diagnosed with a mild form of autism and I know my niece is looking at different preschools and other kinds of help for him. It didn't really come as a surprise to any of us that he was autistic. I know my niece is in the information-gathering stage and trying to figure out what she can do for her son.

I'm sorry. 

louann jude

Autism varies enormously, so it's very hard to say what his future will hold. The experts you'll be seeing over the coming weeks and months will be able to give you a much clearer idea of prognosis.

I have two cousins on the autistic spectrum, but at the milder end. So far they're doing well in mainstream schools with some extra support, though they don't find it easy. They have good groups of friends, and take part in all kinds of activities - sailing, diving, music, horseriding. They have great and full lives, despite the autism.

A friend of mine has a severely autistic boy. His language skills seem similar to those of a toddler (he's 8 or 9), and he will always need care.

There are things you can to to make your son's life (and yours) a little easier. The biggest one is a clear routine. Autistic children have much more 'black and white' thinking patterns than other children do, so knowing exactly what is happening when can really really help them feel calm and secure.

Animals make a HUGE difference to autistic kids. My friend has just got a therapy dog for her son. They're trained to lean into and comfort the child if they start panicking or getting overwhelmed when they're out, and also to keep a little distance between them and other people - to stop the child feeling overwhelmed or crowded by others (like when walking down a busy street).

I've also done work with very severely autistic children and horses (I used to volunteer with the horses). The change in the children once they were on horseback was amazing - they were so much quieter and calmer, more focused. If that kind of thing is available in your area, then it's definitely worth investigating.

I'm sure your daughter will understand at least a little about the situation. Tell her at least some of what's going on, even if its just that her brother is a little different and the doctors are helping him. Where possible, arrange to have her pick some activities to do, so that you have, say, a doctor's appointment on a Monday and she gets to pick something to do on the Tuesday. That way she shouldn't feel too left out.

I'm sorry if the is information overload. I'm by no means an expert, but I hope this leaves you a little reassured

Thank you both so much for your kind words. 

My son was diagnosed with a moderate form of Autism. The reason they had a hard time to come to his diagnoses is he is really social with people if we are around. He will look you in the eye and give hugs and kisses freely. His main problem is language and they say he is at a two year old level but I think more of an 18 month old.

I think what is scary for me is I have only been around 2 children with it and both are severe. My cousin is 22 and functions like a five to ten hear old. Then a friends son was 10 at the time he was completely nonverbal and would sit and rock and hand flap. They both have violent outburst.

My daughter is only 2 that lives with us. I also have an older son that is 15 and a daughter that is 7 they both live with my mom. I plan to have a mommy and daughter day in a few weeks. Also she is with me during the times he is in school. 

I am sorry to sound the way I did in my last post I am still processing. I am usually fine but I have my moments I completely break down. Its usually in middle of the night when I have time to think.  

You sounded just fine before. I can't imagine how upsetting and overwhelming this diagnosis is.

Moderate autism suggest to me that your boy will be able to hold a conversation when he's older. The fact he's so social when he feels secure is really positive. I know how scary the severe cases look - just keep reminding yourself that your son isn't at that level.

The younger (and more severe) of my autistic cousins is somewhere between mild and moderate. He's very creative - loves crafts and making things, and has a good life. Where the autism shows is things like he's VERY literal minded and freaks out/has meltdowns easily, he has real difficulty making decisions, and will have outbursts sometimes after school - simply as a result of trying to fit in and act 'normal' all day.

The biggest service you've done for your son is getting the diagnosis now. Just knowing about the autism and being able to work with it will make a huge difference to how well he adapts and copes as he grows. There is plenty of hope for him to have a good life

The local NPR station here recently did a thing about autism and how it affects families: http://www.wbur.org/npr/463359369/after-the-diagnosis-how-families-experience-autism You're not alone in dealing with an autistic child A friend of mine has an adult autistic son. I'm not sure exactly what type of autism he has. I know he can talk and went to regular public school and graduated from high school a few years ago. I don't think he's doing anything right now other than being at home. I know my friend is trying to get him into a work placement program or group home but it's hard.

There are autism support groups for parents everywhere.  Joining one will not only give you support but also resources and knowledge. 

Speech Therapy is a must.  I don;t know where you are but if you have a college near you that has a special needs program or Slp degree check to see if they are taking clients.  My 3 kids had speech therapy at Loyola in Columbia MD and it was amazing.  It's also cheaper than a private SLP.  My kids also had speech therapy  at the school.    Also check with your local school district to see if they have a head start or preschool program for special needs kids.

Your daughter may be in school with autistic children.  You can schedule many of your son's appointments for when your older daughter is in school.  the younger one won't know any different.   Pack a bag of toys for her to play with when you are at appointments. 

There is a series of books Ten Things Every Child With Autism Wishes You Knew.  There is one for teachers, parents and I think siblings.  they are short and informative.

Thank you all so much. 

We have an appointment at Children's this Friday for support counseling. Then we will hear the recommendations from the doctor. I know he said speech therapy and I think Occupational therapy. Its kinda of a blur. 

I have found a school that is close to hear that is for Autism. It offers all of therapy and Music. He loves music and to dance. He actually goes around singing a lot. 

We also are supposed to meet with a geneticist. He has a deletion on Chromosome 15 which the dr said was the reason he ultimately came to the decision on the diagnoses.  

That school sounds great

Good luck with all the doctor's appointments. It must feel like such a whirlwind at the moment. Hang in there hun

The good news is that early intervention has been proven to help tremendously! Autism spectrum disorders run in my family; for some reason, they seem more severe in the younger generations, but my nieces and nephews with it all seem to be doing fairly well, even thriving! I hate the label by the way.

When I read your first post, @Louann Jude, I thought the same thing as @Columbine re: the animals/service dogs. Service dogs can do wonders--and they can also link a person socially, it's amazing how a dog can provide an introduction.

I volunteered at an Equine Therapy program. We were not told the dx's of the kids (in order that we did not think of them or refer to them as their dx). The kids all benefited greatly from the confidence they built riding the horses. For some, the physical nature of riding brought increased strength and balance, and for others, riding brought the ability to be more flexible (to "think on their feet," as it were). The kids whose parents had money paid for the program, the kids who didn't got scholarships.

I'm also not too into labels--I think they are more like courses of action.

Hope you're doing okay.

That is exactly what is bothering me, the label. Me and my fiancee is not treating him any different than before. I just dont want the poor baby and poor you looks. 





My baby is loving, intelligent, loves to help and just a beautiful child. He can learn just differently. He isn't able to communicate and it frustrates him and causes tantrums. He fights with his sister but if she gets in trouble he jumps in to save her. He loves hot wheels, buses, and school. 





When my oldest was born he had to have a colostmy bag because of a bowel disease. He also has Selective Mutism, I suspect Asburger's but Mom wont have him tested. He is fine now, but all I got was that poor baby why dont he talk, I hate that. My son is thriving and in 8th grade with a 3.28 gpa.





 I expect Aiden to do his best. And his label will not define him.

Labels DO have their uses. I was undiagnosed with various things for a long time, and my goodness, how I wish I'd been diagnosed earlier. Early diagnosis provides more appropriate and, in some cases, more effective treatment. It also helps others to understand what the situation is and how best to handle it.

A label doesn't have to be negative - think of it simply as a shorthand for what parenting and learning styles will suit him best. We don't see 'blind' or 'deaf' as a negative label - just a statement of fact describing a medical condition. This is no different, imo anyway

I have Generalized Anxiety disorder and that label is the worst. If you go in for something in my experience they like to blame everything on it. I cant escape it.

After his genetic test came back and we went for his first drs appt. the dr kept saying kids like him. They like to generalize everything and blame it on his diagnoses.

I am glad we know what is wrong and how to teach him better, but people tend to see the label and not the label and not the person.

That's why I like to think of diagnoses as courses of action--how to get from here to there. And I also believe in people *having* whatever it is---rather than *being*...

Definitely get involved with an autism group.  If your son is put into a main stream school the 'label' will help you get him the help he needs.  i was amazed by the number of ADHD children who rec'd meds at the school who did not have an IEP.  Something that would have given them the extra help they needed from making sure homework was written down and the proper books were taken home to needing a quiet place to take a test.  In Howard County MD, one of the 'best' school districts, there were people who made their living suing the school district to get the kids the help they needed to learn.

The autism group can tell you which teachers to avoid (even at the autism school), what modifications to ask for.  They will have answers that your doctors will not have.  You will need to be proactive to get your child what he needs.  Sorry, I don't mean to add to your anxiety.  I wish someone had told me all this when my oldest started speech therapy at 2 yrs old.  By the time the 3rd one hit the school system I was praying for evil PMS mom on IEP days.  If you go in there meek, they walk all over you.  Also dress professionally or at least casual business.  Apparently they treat you better than showing up in jeans and a t-shirt.  Volunteering at the school is also a good way to see what is going on.  They are not going to tell you everything, but if you are there and helping you will get more consideration.

The speech therapist my begin by teaching sign language, or using Mayer Johnson symbols

rpandcat said:

That's why I like to think of diagnoses as courses of action--how to get from here to there. And I also believe in people *having* whatever it is---rather than *being*...

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This is kind of hotly debated in the autism community. Because autism is very much a part of our being----we would not be "us" without the autism. So, unlike most people with differences, the autism community generally prefers "autistic" to "person with autism". Of course some individuals will have different preferences.

Anyway, yes, do join an autism group! You'll learn how to get your kid what he needs from the school system, and how to deal with the challenging parts, and how to enjoy the good parts . Mild autism is very much not a disability, just a difference.