Moms of Multiple Children with Autism

Tracey - posted on 04/19/2012

My 2 year old identical twin boys have autism. We're at the beginning of our journey.

Jamie - posted on 03/26/2012

have two with Autism; a 6.5 and a 4.5 year old. my 7.5 month old isn't showing any signs. all boys.

Susan - posted on 03/26/2012

Thanks for the college information, Hark. I really appreciate it. Right now my oldest son with autism (20yo) is attending our community college. He's carrying four classes this semester and doing very well. Academics come easily to him. On the other side of the coin, we completed the legal process to make him our ward because he really struggles with all of the things he'd have to do to be able to take care of himself: he can't remember his medicine or make appointments, he can't drive, he needs to be reminded to perform routine hygiene, he can't grocery shop or feed himself much beyond a PB&J sandwich (in fact, his whole diet would consist of those and sweets), etc. etc. etc. He needs the safety of having somebody else take care of him. His therapist thinks he's a good candidate for a group home at some point.



I just wish the programs for helping kids like this attend college weren't so blasted expensive. We don't qualify for any financial aid, but programs that start at $30K a year and go up are out of reach except for the very well-to-do if you can't get state assistance.



Sue

Hark - posted on 03/25/2012

Susan Comtois - I wanted to say to the family with the 3 teens with autism. I have four children, 3 have been diagnosed with Autism (two Ashbergers and a son who is in the middle) My eldest son, was recently 09/11 was in the psych ward and diagnosed as BiPolar, but I'm willing to bet that he also is Ashbergers. My youngest son goes to a school called The Harbour School, in Maryland, and it is the best school in the world.



I am very impressed and have been living in the area for over 10 years now and the school thing, yeah, a ruff battle very tear jerking, because of the people that didn't know what to do, didn't care, or were just jerks. All passing the buck. Not sure where to take my son the eldest to get or be tested as he is 20. But I said all that to say, as this school gears up for their 2012 graduation of high school seniors they sent this link to the parent of all in the school, in their newletter,

20 great colleges for students with disabilities http://www.bestcollegesonline.com/blog/2...



My eldest daughter 17(going on 18), desires to be a translator and is studying Japanese, 2nd year, and was selected to go to her school to represent them and the state there, cost 4000 bucks for 2 weeks, and my family and I just over came being homeless (imagine that task with a house full of children with Autism). So we are seeking help and resources.



Anyway, look into those schools to see if they can help you with your children that are headed to adult age. Just because a child has what I like to call a "change" (not a disability) doesn't mean they shouldn't pursue their hearts desire as a career.

Lana - posted on 11/03/2011

Hi I have a 3yo with ASD and 5yo still undergoing assessments for possible Aspergers. @ Marissa Your child that was overly social at the ADOS test sounds like my 5yo and unfortunately alot of peads only go by those results to say they dont have a problem. The pead that i see also looks at the side that where it says does not do that she over compensates and instead of not talking to people she goes up and gives complete strangers a cuddle in the middle of a shopping centre. Yet has some real behavioural problems at home and problems with receptive language and poor speech

Sharlene - posted on 11/02/2011

Hi there , I have a son with autsim and two other children with learing disablities, I just wanted to say Hi,cheers

Jill - posted on 11/02/2011

I am looking for any mother of a child or multiple children with autism, and whose own mother (children's grandmother) took fertility drugs (ie, clomiphene, pergonal, hMG, menotropins). If this sounds like your situation, please send me a message at jill.escher@gmail.com. Thank you.

Marissa - posted on 08/12/2011

I have a 5 year old with PDD_NOS, his twin has special needs of some sort. He hides when people talk to him but when we did an ADOS he was overly social. We have a 3 year old who had one ADOS when he was 2 and a half and was diagnosed with PDD_NOS and recently had one as a part of a genetic study we were in and they said he was overly social as well. I still think he has PDD_NOS.

PEGGY - posted on 08/07/2011

I, too, would like to connect with mothers who have more than one child with autism. Did anyone respond to you?

Jeanie - posted on 04/26/2011

omgoodness...what wonderful posts!!! this is so my family paulette roberts!!! i didnt even have words to express everything youve just expressed this is our lives as well...i have five children g-6 b-5 twin g-3 n b-2 of these ...my second family...my 5 yr old son has mild mod autism my twin girls just diagnosed w mild moderate autism n moderate autism...4 are in diapers all 3 autistic children have sensory issues. yes i feel crazy n mean n scared n sad n vulnerable to meltdowns myself...;( ty for posting paulette...its somehow encouragimg to me to know im not alone.

Tania - posted on 04/13/2011

wow , you always think am i the only one . i have two boys 10 yr old with aspergers and ocd and 4 yr old with aspergers , tourettes ,ocd and sensitivity issues and i can tell you i am so tired , i am 32 yrs old and feel more like im 50 . they both set each other off and yes i was the same people telling me oh its just a phase he will grow out of it . i still have people putting in there advice when they wouldnt have a clue . its harrd work but somehow we manage . i just take it day by day . i never get a break , the onlt time is when they are in bed and im still thinking about them . lol

Beatrice - posted on 04/11/2011

I have 3. I am thinking about having my oldest who is 16 tested. He shows only eating issues but I never saw anything else.

BRANDI - posted on 06/06/2010

Thank You for all the responses to my question, very helpful. I think that autism is a combination of DNA and vaccinations. If I would have received the amount of vaccinations that my child has, I could have been autistic. I walked on my toes as a child and other minor autistic traits. I just think that something has changed in the environment from 1983- 2003. The numbers are on the rise and we just say DNA? No I say "What has Changed since I was a Child" May be vaccinations, may not be but I am determined to do any and everything i can to help my child. (autism can be cured with proper diet and vitamin supplementation)

Susan - posted on 06/06/2010

All five of my kids were vaccinated. Three have autism (AS); two don't. Our most severely affected son showed signs of problems from birth--I just didn't know what I was seeing because he was our first child to have autism.

Susan - posted on 06/05/2010

my first son was fully vaccinated, my second son was partially vaccinated, my third son was not vaccinated. All three are moderately autistic. I knew going into #3 what would happened if I got pregnant with another boy. : ( tough decision all around. I had my tubes tied after my third son. Autism is very genetic at my house : (

Ilene - posted on 06/05/2010

Brandi --

Before going on, you need to understand I don't believe that vaccines cause autism. My children were BORN with autism and it just took until they were 26 months old for us to get a diagnosis, mainly because of my own denial. I am one who cheered when The Lancet finally came to their senses and retracted the article they published by Dr. Andrew Wakefield and jumped for joy when I learned that Dr. Wakefield had all of his credentials removed for needlessly creating an international panic.

Now that I've said that, I also believe that there is a genetic link when it comes to autism. There are some specific genes that have been linked to autism, but that only accounts for a small percentage of cases. I think that's only because they are still discovering these genes. There are trends in families of autistic individuals that seem to be beyond chance in terms of the preferences of individuals (even among those family members that show no evidence of autism).

In my case, my multiple children with autism are a set of fraternal twins and they have exposure to the same genetic backgrounds (same mother and father).

Having a child with autism puts you at a higher risk of it happening again. Just like, in my case, having conceived a set of multiples means it's more likely to happen again than it would in your average woman. However, does that mean I should avoid getting pregnant again? That's a personal decision and there really is no right or wrong answer. No one can guarantee that it won't happen again. And no one can tell you that it will.

I doubt this helps you with this decision. Personally, fear of autism is not something that will prevent me from having another child. But there are other factors in my life that might.

Good luck to you!

BRANDI - posted on 06/04/2010

hello i only have one 6yr old boy with autism and have been thinking of having another child but...
my question is...(if to personal then please dont answer) Did you vaccinate both children and are both children from the same father?
Just trying to figure out if i can prevent autism. I have a hard enough time already with appointments, therapy ect... I dont know how you do it

Gemma - posted on 06/04/2010

Hi, I have a 12 year old boy with ADHD and mild Autism, I also have a 5 year old boy with high funtioning Autism. Life is good but very hard!

Susan - posted on 06/04/2010

well, if anything thank goodness I am not alone!!! I haven't received any respite services from the govt. can you imagine. I hired a grad student to come in and help me (she's specializing in autism intervention and rdi), she worked so well with the 3 year old, I ended up working with the 1 year old while she works 1 on 1 with the 3 year old, that I don't get breaks : (. I'm still looking for that money tree to pay for all the services they are "suppose" to get! : )

Andrea - posted on 06/03/2010

Reading all your posts are like reading my mind! I have an 8 yr old with Asperghers , ADHD & cleft lip and palate. A 4 yr old Daughter who is being assessed for Asperghers next week who also has athsma and a 1 year old born with club foot and a bowel abnormality and already suspect he has AS.
It is hard to split your self into many pieces, and the appointments ! Susan I love the reference of making an appointment for yourself....that is a must do and positive way to retrain our way of thinking as us "AS" mums tend to have to do it ourselves or it never gets done.
You are all amazing mums ! Never feel like you are having a winge we are all just discussing basically what encompasses our day to day lives, love reading all these post, great topic !!!
Andrea

Susan - posted on 06/02/2010

Susan, I can so relate to where you are because I was there too when my boys were younger (we have five kids--three with Asperger's and one with bipolar disorder). I half killed myself trying to do everything for everybody, and I never had time for myself. One day my therapist told me that I needed to think of myself as the battery that kept the family running. She said if I didn't take time to recharge myself, sooner or later I would run out of energy, and then where would everyone be? That made sense to me, but I still couldn't see where the time would come from. Then one day I had an epiphany. I realized that I could *always* find time for the therapist, the vice principal, the kid, the doctor, etc. etc. etc. The day I decided that I was at least as important to myself as the vice principal was the day I decided that if I could find time for every appointment that came along, I could consider myself an "appointment" and make time for me too. Once I started thinking of it that way, I managed to start taking care of myself. It's really, really important. You need to maintain your energy level, because the whole family desperately needs you. Best of luck to you!

Ilene - posted on 06/02/2010

Susan --

I just read your response here and I just wanted to send you a !!!!!!!!!!!! I totally sympathize and understand everything that you said in your post here, and have many many many many days that I feel the same way, and I only have 2 kids on the spectrum (my older son is neurotypical), and they're still relative babies. I hope that you can find the relief and that respite services comes through for you!!!!!!

-Ilene

Susan - posted on 06/02/2010

I think one of the biggest challenges I face with having the multiple children on the spectrum is you always keep telling yourself your gonna get a break and you never do. Just when you go to sit down, someone is having a meltdown or you could be practicing therapy with another and it just seems endless. I love them dearly, but I find it hard to take care of myself when I exert all of this energy on my children and have very little time to take care of myself (not to mention my hubby sometimes acts like a fourth child LOL). I apply for respite, long waiting lists for services (I'm in Texas). You can't just hire any Tom, Dick and Jerry to come over to watch the kids because it's autism x's three. I actually had to choose at the beginning of the school year which child to fight harder for educational services. Which child needs it more? I had to do the research show up at the IEP meeting (sleep deprived because I don't get to anything until after the kids are in bed), my house is a perpetual mess (which mentally messes with me, because I have wannabe clean house OCD). The kids feed off each other's behaviors and I often have to separate them in other rooms or other floors of the house. Then you know the husband wants you to be the peppy house wife and I'm like... good gracious, can I do anything for anyone else? (sorry I'm venting tonight). I really do love the boys more than anything. They are verbal, high iq, but moderately autistic. (ok have to cut this short, the baby is fussing in the other room) go figure!

Erica - posted on 06/02/2010

I have a 6 year old diagnosed with adhd/bipolar disorder/ocd and they are thinking aspergers and now my three year old is showing signs that mimic his brother. For example, I took my three year old today for his preschool screening and I left in tears because he could understand what you wanted him to do if he could SEE the picture but if you just described something to him and asked him which one it was he just copied what you said and what broke my heart is that he looked at me so proud of himself and said i do it mama! His speech is severely delayed; its very slurred and you can barely understand him. He says his name is "trishan" (its cristian) and nobody but his family can understand him. He doesn't speak in full sentences but rather reminds you of a one year old who just says more and me, although sometimes he'll have a good day and talk more. He gets very angry very quickly and doesn't hesitate to jump on my six year old and gauge his eyes out, or punch him in the face. My six year old is the exact same way. What does this sound like to you all? please help!

Kristine - posted on 06/02/2010

I have 2 boys with ASO, ages 4 and 2. it's trying and troubling sometimes, but it's what I was given by God as a gift of being a momma. So as much as I struggle, I thank God every day I was fortunate enough to have them.

Michelle - posted on 06/02/2010

I can say this, ben was dx moderate to severely autistic and John was Aspergers, but I look back on those younger years and I wonder how I managed! They have come so far, there is a light! Don;t pave their roads for them, you will be so surprised where they will go! I mean for us at least autism has not gone away but their abilities have changed, their needs have changed and happily their tolerances have improved, We did a VERY STRICT ABA regimem and it was tough to be so hard in them at such a young age, They worked so hard for such a long time and it is nice now to see them happy in their skin, even if the world doesn;t quite understand them all the time!

Michelle - posted on 06/02/2010

I have two boys, they are 12 and 9 now, but they were disgnosed when they were 3 and 5

Ilene - posted on 05/29/2010

I have 3 year old g/b twins who have both been diagnosed with Severe Autism. They have a 5 year old neurotypical child. It's VERY hard to balance everyone's needs, especially when they are in 3 different programs, and have been so since we began our ASD journey.

Carrie - posted on 05/29/2010

I have three children with autism 6 year old boy and 2 year old twins one a boy one a girl. i understand what you mean by complicated.My week starts with therapy and ends wiht therapy .we have them coming to the house then we have to drive to see some of them and there specialist is in tn and i live in Ga ,so i am always on the go .I carry a bag with me every were that is more like a file cabnet of all the kids important paper work .It seems like some one is always needing somthing.I also work all weekend ,so there is no such thing as abreak at my house.but i am glad to no i am not alone.

Susan - posted on 05/29/2010

We have three sons with Asperger's--ages 18, 15, and 12. Getting the diagnosis for the first one was difficult (same old story about being told there was nothing wrong because his speech was just fine even though everything else was a mess), but then his psychiatrist picked up on the problems with the younger ones as the issues started to become obvious. Having multiple children with ASDs has undoubtedly changed my life and caused me a lot of stress. It seems that as they get older, the behavioral aspects become less severe (although by no means gone). Unfortunately, there's still the whole issue of how they're going to fit into adulthood and get the help they continue to need.

Colleen - posted on 05/29/2010

Hi Tracey i also have 2 boys with autism my oldest is PDD NOS and my yungest is severly Autism he is 4.Are you getting any help from support groups? Or from the goverment.

Tracey - posted on 05/29/2010

I have one severely autistic, one aspergers and one special needs.

Tammy - posted on 05/28/2010

Hi Susan i have one son with high functioning Aspergers and one currently under assesment they are 3 and 6 i got the same he ll grow out of it and of course he didnt when our 3 yr old was diognosed the signs went up for me but of course i had to fight to get him tested as my six year old is quite smart in certain things i also have two older children 15 and 10 (the non autistic ones) it can be very stressful most times but what can you do we just keep going dont we. Between OT, doctors appt, specialists etc i have the saying well if the housework doesnt get done it ll get done tomorrow hehehehe :)

Paulette - posted on 05/28/2010

Hi Susan

I have 3 children, 6, 4 and nearly 2. My eldest son has been recently diagnosed PDDNOS, my 2nd son is under assessment at the moment and although my daughter is not quite 2 ever since she was 6 months old has shown alot of ASD traits and is being monitored. They are all high functioning and suffer extreme anxiety and have alot of sensory issues.

When I only had my first child although he was difficult I managed really well, however as soon as my 2nd child came along it became a nightmare and I struggled everyday. Everyone kept telling me it was just a stage, he was just being a boy, he would grow out of it etc but of course he didn't. Similarly with my 2nd son everyone kept reassuring me it was just because of his age but instead of his behaviour improving over the last 2 years he just keeps getting worse.

They are all extremely needy and demanding and if they don't get my full attention immediately they will have massive meltdowns so it is not uncommon while I am trying to resolve an issue with one that the 2nd and/or 3rd child will start screaming and crying. They just don't understand at all that it is not humanly possible for me to split myself 3 ways and sometime will become quite verbally and physcially abusive to me. I tried explaining to my eldest one day why I needed to attend to the 2 younger children first and he told me "well you shouldn't have had anymore children because you don't have enough time for me".

They also really struggle getting along with each other and just can't see that what they are doing is upsetting the other so they just continue doing it until that child has a meltdown. I can't leave any of them alone for even a few minutes because they will start fighting. They need to be continuously supervised and I find it extremely difficult not being able to even do the smallest of things without have to stop numerous times to referee.

I have tried asking all the therapists my son has been seeing how to make the strategies work when I am trying to deal with 3 children at a time not 1 but to date nobody has been able to come up with any ideas. They have had some great ideas for dealing with 1 child at a time, which might actually help but 99.9% of the time I have all 3 of them on my own and the ideas just don't seem to work then.

The problem I have with all the appointments, meetings, therapies etc is that there is just not enough time left to do anything else. It has been really difficult to because I only have my mum who can help out occasionly so I end up having to drag all the kids to these and my middle son doesn't cope going out of the house much so he has multiple meltdowns each day.

Sorry for such a long post I haven't met very many mums with multiple children. Whereabout do you live? We live in Australia.

Thanks for listening, take care :)
Paulette

Colleen - posted on 05/28/2010

Hi there I have 2 boys with Autism,my 8 year old boy with PDD NOS and my 4 year old with savear Autism,he has a realy hard time with day to day things.And my olderst boy trying need help in school we are trying to get him a teacher aid for him.

Susan - posted on 05/28/2010

Hi there, how are you functioning as a family unit. Here, it's quiet tiresome, however mine are 6, 3 and 1

Sheldon - posted on 05/28/2010

hey there I have 2 children with mild Autism a 8 year old daughter with mild Autism and a 7 year old son with high funtioning mild Autism,ADHD & ODD