Pediatrician says my 2nd ds may be autistic!

[Nik's Mom]

Hi,
I've been worried about my youngest ds (3 years old) because his speech just isn't where it should be. I took him to the doctors several times, but they said nothing to worry about. Well today his pediatrician said we should have him evaluated, since my oldest ds is autistic. I'm so devestated that both of my children may be autistic. I don't know how I'm going to go through it all over again, with the months of evaluating and fighting with the school district for many years to come if he is autistic.
I'm feeling so sad right now. How could lightening hit twice with us? DH is out of town until tonight, so I haven't even told him yet. Anyway, I'm sad and came running here as I've done many times before with my oldest ds. Sorry, I'm rambling.
Anyway, do any of you with autistic children have 2 in your family? How do you cope?

 

[minkydog]

I am so sorry, especially for you to get bad news when your DH is away. I so hope it's not true, but in my experience a ped doesn't make this kind of diagnosis lightly--they don't want to shatter your world. I don't have 2 with autism, but I have 1son who is bipolar w/severe ADD and one son with severe mental retardation & autism. They are 9yrs apart and I know exactly what you mean--lightning struck twice!

I have no words of advice. At first I was overwhelmed. Then, gradually, I got my bearings, and finally I became an advocate for my children. It took awhile, but now I hardly ever cry. I learned to listen to my gut, to love my children, and to forge ahead on the assumption that they CAN learn, they WILL succeed, and accomodate them where I must. "Can't" is not in my vocabulary. Both sons are doing well, within their limitations.

Bless you. Have a good cry, it will make you feel better. Try to get some rest now. You've had a long day.

Cathy--when the going gets tough, the tough duck their heads and keep going. The sun will definitely come out tomorrow!

 

[Nik's Mom]

Thanks for the comforting words. It's a hard pill to swallow right now. I'm very worried on so many different levels. I had always hoped that my yougest ds would watch over his brother when my husband and I are gone, or too old to do it (I know that's a sad thing to say). Now, I feel worried about both of their futures when dh and I are gone. Then I feel worried that I may not be able to do the work I'm doing with my autistic ds with a 2nd autistic child. And all of the appointments and all of the fighting with the school district. O.k, I know God doesn't give us more than we can handle. I just have to remember that.

 

[minkydog]

Try not to think too far into the future. We don't know what the future holds or how we'll respond to it. Worrying about it today, just wastes our energy and we don't have enough to spare. Later when things calm down, you & your DH can seek advice from a special needs attorney who can help you plan for their future.

Hugs, cathy--Mom to John,18, Eleni,12, and Christian,10

 

[SueM in MN]

I remember when we got the diagnosis of CP on my youngest DD; one of the best pieces of advice I got was, "whatever turns out, it is still the same child you loved 24 hours ago. Maybe with some challenges, but with love, your child will go as far as possible."
I do think there are some posters here who have more than one child with autism spectrum, so hopefully you will get some support from people who can help you on your journey.
Also, the developmental pediatrician may find that what it looks like is not what it is - younger kids who have a role model with a disability sometimes pick up some of those mannerisms - hoping for you that's what is happening in your life, but if it's not, I believe God gives what you need to get thru what you are given.

 

[bumpysheep]

Hi,
I've been worried about my youngest ds (3 years old) because his speech just isn't where it should be. I took him to the doctors several times, but they said nothing to worry about. Well today his pediatrician said we should have him evaluated, since my oldest ds is autistic. I'm so devestated that both of my children may be autistic. I don't know how I'm going to go through it all over again, with the months of evaluating and fighting with the school district for many years to come if he is autistic.
I'm feeling so sad right now. How could lightening hit twice with us? DH is out of town until tonight, so I haven't even told him yet. Anyway, I'm sad and came running here as I've done many times before with my oldest ds. Sorry, I'm rambling.
Anyway, do any of you with autistic children have 2 in your family? How do you cope?

Hello. I was dx'd LFA at age 2 and am now 24 and considered HFA. But I have no siblings. But I do have four cousins, two with LFA, and two with HFA. Two of them (1LFA, 1 HFA) are siblings. So it happens, I also went to special ed schools and I think there were 2 or 3 people who not only had some form of autism but also had a sibling with the disorder. In my case we now know why, we all have Tuberous Sclerosis a genetic disorder. Tuberous Scelorsis is the second most common genetic disorder known to cause Autism. If you secound son is also autistic maybe you should make sure there is not a genetic disorder that is the reason for this.

 

[Talking Hands]

I knew a boy in one school I worked at and he had 3 sibs with LFA. All the boys were LFA but the sister was fine. Two were also blind.

 

[Figment1964]

Anyway, do any of you with autistic children have 2 in your family? How do you cope?

Many hugs to you! I know this must just be so hard to get a handle on and the concern for the future must be overwhelming right now. I think Sue had very wise words when she said that she was told that her daughter with cp was the same child as before. I got that same advice when we were having our ds diagnosed.

There are quite a few families in our support group here in Oregon that have more than one child, and often a parent, on the spectrum. There are studies that show that it can be hereditary so that isn't surprising that there could be more than one in a family.

Hang in there, we're all here for you!!!

 

[Nik's Mom]

Thanks, everyone. I know one thing for sure, and that is that I will love my sons no matter what. I just hope I do the best for both of them and don't let them down .
Thanks for letting me know about the genetic disorder, Bumpysheep. I'll be sure to ask about that at the doctor's office.
Thanks for your words of encouragement from all of you.

 

[MarieS]

I know what a terrible shock it is to find out your second child has something wrong. Both of my boys have hydrocephalus and CP. I just could not believe it could happen again. We found out with my second son that there is a rare genetic form of hydrocephalus. I have several friends with children with autism. I do know that for some there is a genetic connection since one family has both a boy and a girl with autism. Their mom told me she was in denial about her daughter for some time. You might want to ask the doctor about it.
As for dealing with a second child, I would say take it day by day right now. Find out for sure what you are dealing with. I understand your worries about their care in the future, but for right now try not to think too far ahead. Then when things are more on track, you can contact a lawyer about a special needs trust.
Thinking of you!

 

[wide awake]

I know one family with four ASD children and a couple with two ASD...all of the children are boys. That said we are having incredible results with methyl B-12 shots...My almost 15 year old DS is saying new things, using new sentence structures every day.

ETA
I know how hard hearing the diagnoses is...but you're lucky in that incredible advances are being made. When DS was diagnosed I was told he'd probably be in an institution by the time he was 12...and now we are turning a corner in a positive way. Hope the same happens for you and both DSs.

 

[faeflora]

Just wanted to let you know you and your family are in my thoughts.

 

[leise]

Nik's mom, so sorry to hear your news. I just have one with ASD, and one without, but I know you must be feeling very sad right now.

In my local support group there are a number of families who have more than one ASD child. A good friend of mine has two boys with ASD. What I notice from them all is that each child is so different in the way their ASD affects them, that quite often what was a problem with one is not a problem with another. They are all such individuals. They also develop so differently that its hard to look at one child and guess what the other will be like at that age.

My friend with two absolutely loves a book by Charlotte Moore, called "George and Sam", written by a mother of two ASD boys. I love it too, it made me laugh far more than it made me cry. I don't know if you can get it in the US, because it's published here in the UK, but if you can it's worth a read

More hugs

Leise

 

[da-winnie-pooh]

(((hugs))) to you and your sweet children.

I know a young lady with an autistic brother (I guess he would be considered high functioning, but I'm not sure) and at least 2 autistic children. The third might possibly be, too. I'm not sure where they fall on the spectrum - she just told me it's a different classification from Asperger's.

Anita

 

[mbb]

We worry about the same things for our guys...what will happen to them, if/when something happens to us? Like MarieS said, we did all the things we could do now, that would at least make things easier...appoint guardians, life insurance, trust planning..and even those plans have changed as the boys have grown older.

Some days I cried, got angry and asked why us, some days I wanted to sleep in bed all day, some days I felt like I could take on the world, and some days I could laugh..it's a process.. now, for me, every day is just a day as a mom, loving her boys.

Like Sue said, your child hasn't changed...I just felt like something had hit me hard, and shifted the inside of me...does that make any sense?

We're here...and thinking about you..

Mary Beth

 

[missypie]

Sometimes it's harder to see it in the second child, esp. if it is less severe. Our DS14 has very mild Asperger's. We know another family whose 14 year old son also has an Asperger's diagnosis...although he is way more "out there" than our son. I have had occasion to observe their 12 year old daughter, and I'm pretty sure she has Asperger's...she is so much like our son. But to that family, she's the "normal" child. I've never felt it my place to tell the mom my amateur diagnosis of her daughter, but I think a diagnosis would make the daughter's life easier.

 

[lajones81]

First of all, !

As a teacher, I have had many students with special needs, including autism. I can only imagine how hard it must be to have one child with special needs, but can't envision what it must be like with two children! My thoughts and prayers are with you.

My experience has been varied. There have been some families where there is only one child with special needs. However, for the most part (and this is agreed upon with many educators that I know), there tends to be a trend where more than one child will have special needs in a family. I can think of a family where all four of the kids need some type of special assistance.

Another point to add is to make sure you know your rights as a parent of a special needs child. If your child is receiving services, you should be given a copy of your rights indicating what measures you can take to help assist your child. By law, these rights must be given out every time we (the school) meet with you (the parent). One right that you have is the ability to call a meeting to discuss your child's progress. Yes, as a parent, you can always ask, your child's teacher for a meeting, but as the parent of a special needs child, you can ask to have your child evaluated, etc. On the other hand, we (the school) can also ask you to meet. For example, I recently had a meeting to discuss a behavior modification plan for one of my students. This meeting was called by the school because the student's behavior was getting out of control.

Ok, that's enough of the teacher in me! Sorry to ramble onwards...

If you have any questions, I'll do my best to help answer them.

Best of luck to you!

 

[DisneyDreams4P&B]

You know it is rather comforting to see some familiar names and posts whenever it comes to Autism. I know that Nik'sMom and I have exchanged stories and emails. I hope that other people get from these posts what I do and that is a sense of encouragement and the feeling that I am not alone in going through this.

We too were told the same thing about our DS2 whose older brother has HFA. We had him tested and all he apparently has is a speech delay. He startes speech therapy next week. From what I understand, this is rather common for sibs whose older has Autism, as they model there speech more closesly than that of the parents. If the sib has little to no speech than it is understandable that the younger might have trouble.

Please keep us posted to how it turns out, always here for support.

 

[riu girl]

Sending some pixie dust your way about your 2nd DS's assessment. Perhaps it will turn out to be something as simple as a language delay.
Keep us posted.
Suzy V.

 

[Nik's Mom]

I have an appointment with the pediatric neurologist on 7/8. I'll keep you all posted. Thanks for your prayers and good wishes. It is so comforting to hear from other parents of autistic children, as well as other disabilities. This board is such a positive part of the DIS community!