Wednesday, June 1, 2011

One of our biggest regrets... and a question for all of you...



Most of the other autism families in our lives have multiple kids. Either they didn't know their kid was on the spectrum yet when they had more, or their kid with autism was their last one. And most of them have one severe kid and one mild kid... or one kid on the spectrum and the other not at all.

But they ALL seem more balanced than us. Our lives revolve around Kyle and we live & die with his moods. When he's having a great week, we all are and we he's having a rough week we are all at each others throats. If we had another kid the focus would be split and i think it would be better for Kyle and for us.

But we waited too long and I always feared what if the second one was more severe. How could we handle 2 Kyles?

But we regret not having a 2nd kid right away before we knew about Kyle...

So, I pose the question to all of you...

Where does the child with autism fit into your family dynamic? Was he/she your first child? Only child? Did the fear of having another child on the spectrum factor into your decision whether or not to have more kids?

Inquiring minds want to know... I want to know...

:-)

92 comments:

  1. Hi Daddy, we have an almost 14 year old boy with Aspergers a 9 year old not on the spectrum but has an eating disorder , panic attacks and sleep issues and an almost 8 year old with autism. Our son wasn't diagnosed till 9 which made me look at our super quiet lost in her own world 3 year old who was then diagonised, the difference was our daughter got years of early intervention which helped immensely but our son didn't qualify for anything. Our life is what it is and no argument about religion, immunization or fOod is going to change it

    ReplyDelete
  2. Thank you for posting this. My partner has an eight-year-old son with autism (from a previous marriage) and although I want to have a child with him, I am terrified that I would drown under the weight of raising two kids on the spectrum. Now I know that I would probably regret it if I did not give a child a chance.

    ReplyDelete
  3. Our first son is diagnosed on the spectrum. We knew this before deciding to have another child in which we are pregnant now. We're having another which makes me fear that he to will be diagnosed. However, our lives are forever changed bc of our sons diagnosis now so if his brother is diagnosed so be it. We will again learn how to adapt. :)

    ReplyDelete
  4. My now 16yr old son wasn't dx'd (Asperger's & Tourette's)till he was 11 and I often wonder if we'd known would we have stopped...
    But then I remember that my 2nd son, now 14, had a cranial malformation requiring surgery at 6mo old and we were told it was a caused by a genetic defect. He has been diagnosed with OCD, Sensory Integration Deficit, and extreme anxiety when he was 9.
    My 3rd son, now 11, is not officially dx'd but has all the same signs & symptoms of Asperger's (and more) that my oldest had at his age. But this time around I saw the signs earlier and stepped in myself. I think I've been a better parent with him because I understand more now and know he's not intentionally trying to drive everyone nuts, lol.
    My youngest is my 8yr old daughter and she has signs of OCD and sensory issues.

    While it is sometimes overwhelming to juggle all the needs of my kiddos I think it's made me much more understanding of the world in general and having my oldest diagnosed has prepared me for the younger ones.
    I think that even if I hadn't given birth to more children after my first I very likely would have adopted other children.

    ReplyDelete
  5. #1 diagnosed at 3 and a bit with Aspergers with high anxiety when number 2 was a year and a bit, part of the reason for not have another is the diagnose and the fact we can see it run through the family. Don't think number 2 is on the spectrum (crossing everything here).

    ReplyDelete
  6. I have 4 kids. My daughter is 19. She was diagnosed with Tourette's at age 6, which by then I had her little brother. Next is my oldest son who is 14. I had been trying to get him diagnosed since he was age 5 but nobody paid any attention to me. He was diagnosed with asperger's when he was 10. During the time I was trying to get him diagnosed, I got pregnant with my youngest son. Right away I knew there was something different about him but he wasn't diagnosed officially with autism until he was 3. When my #3 child was 4, my husband and I decided to have another baby, knowing very well that there is a pretty good chance that he/she would have autism, and possibly more. I was over the age of 35 so they did all the special tests, that came back saying there was a chance she would have Down's. At that point my husband and I decided it just didn't matter. Challenges, disabilities, whatever... this is our child and we will give him/her unconditional love. Would it be a REALLY REALLY hard thing? Sure, but aren't all children a challenge to raise? For the record, child #4 is NT at this point but I have noticed something things that make me think she has Tourette's also.

    ReplyDelete
    Replies
    1. I just have to commend you for your strength and perseverance. Reading this warmed my heart. I love that you embraced the hard times and willingly accepted that you may have another child with a disability.

      I hope that (someday) when I'm a parent, I can take everything in stride as you have.

      Delete
  7. Our oldest is 6- just recently diagnosed with Asperger's. Our next up is 5 and he has been dx'd for 3 years with autism. I also have a 3 year old and an 18 month old. I worry that they are on the spectrum, but I guess when we looked at the options it was never about potential autism, but rather, our love for the children we have. And, I will be honest, we had 3 surprises and one planned- the only planned is our 5 year old non-verbal. No more though- 4 is enough no matter what they are dealing with. :)

    ReplyDelete
  8. My older son was dx with autism at 2 yrs old. He's now 4 yrs old. When he was dx i already had my second son. And i was really worried that he might be on the spectrum. But he wasn't all he had was speech delay and sensory issues but with EI he did well.

    ReplyDelete
  9. The day our developmental pediatrician mentioned autism and that we needed an evaluation was the day I found out I was pregnant. We had been tring for eight months. All of my daughters dx were not genetic and we had a 90% chance

    ReplyDelete
  10. I've been married to a man for the last 10 years. His 23 yr old daughter has moderate Autism. While I am still of child bearing years, I know that he is terrified that it will happen again and would feel that it is somehow his fault. I, on the other hand would absolutely have another child. My step-daughter has taught me many wonderful things. Too many to list but #1 would be the fact that she has helped me to see the world through different eyes and how to appreciate the smallest things!!!

    ReplyDelete
  11. We have 4 kids our youngest has severe autism, sometimes it makes it harder for me to understand what or why he has severe autism when his older siblings are typically normal. Suppose it's the million dollar question...

    ReplyDelete
  12. This is such a touchy subject for so many people who live with an Autism family member. For us.. I knew something was "up" with Tommy as young as 6 months old. The classic story of going to the (military) doc's and them writing in Tommy's file that "mom's one of THOSE mom's".. They really wrote that. I stole the files before hubs was discharged lol Anyhow.. when Tommy was finally diagnosed, i was 4 months pregnant with my daughter. Had I not been pregnant, we probably would have never had another. 17 years ago, the diagnosis came with a pamphlet and what the websters dictionary defined autism. The internet wasn't as obtainable as it is these days. Daughter fortunately is NT (2 years ago she was diagnosed with a seizure disorder- and does have the classic "big head") but 2 minutes after i pushed her out, i was having my tubed cauterized. Im a true believer of genetics playing a giant part of this disorder. We had only wanted 2 kids anyhow.. so in a way, we kinda lucked out with the whole scenario. I try not to judge families with multiple kids. Coming from an Autism Specific school, and seeing families with 4 kids, ALL on the spectrum, while the mom is pregnant with her 5th just blows my mind. But, thats their life. Not mine. I can only take care of the people within these 4 walls :)

    ReplyDelete
  13. I have three children, and William, who has Asperger's (and ADHD, Anxiety, Sensory Processing Sensitivities, and a Coordination Disorder), is my oldest. I have a brother who is 8 years younger than me who has Asperger's and ADHD, so in some way or another both have always had a place in my life. Maybe this is why we had more children after William. I always knew that there was something going on with Will, even before we had him diagnosed (probably from growing up with my brother). But when I talked to the dr. about it, she said kind of put me off and told me I should wait to get him tested. Now looking back I wish I wouldn't have listened to her, but in some way I am glad I did. Will is high functioning enough that I was able to do a lot of therapy with him (that I learned from my brother) without really even realizing I was doing it. And maybe with Will being high functioning, that made a difference too. I'm not quite sure - maybe a combo of all of these things. Our middle child - another boy, and or youngest - a girl, do not have any disabilities. This creates a unique dynamic in our household, but one I would never change. Will learns so much from having sibilings that are not special needs - appropriate social skills, communication, how to try to resolve peer conflicts, etc. Things that he struggles with already, that I know he would struggle with even more if he did not have his sbilings to model. I know that there are families with multiple children who all have special needs, and I also know families (like mine) with several kids and only one has special needs. So, I'm not sure what to believe about genetics. I do know that I was pre-eclamptic with Will and he was born prematurely at 34 weeks. My other two were complication free pregnancies and both were actually born right on their due dates. So my thought is maybe genetics combined with some sort of environmental factor. Again, I'm not sure. But despite Will's challenges, I always try to look at the postivites and celebrate - he is the most loving and accepting little boy that I know. But I do thank God every day for ALL of my children. I have learned so much from all of them.

    ReplyDelete
  14. I have a 3 year old autistic son and a 1year old that shows no signs of autism..he did everything early rolled over at 3 months crawled at 6 months and was walking at 9 months so I am crossing my fingers that he will not have it.. It's hard enough with one

    ReplyDelete
  15. I have 3 kids, the oldest is 3 yo and has recently been diagnosed with autism. The twins are 9 mo old and I am hypervigilant of their development. If I'd had the diagnosis before the girls were born I don't know that I would have planned on getting pregnant or if we'd have chosen to have another child. He requires so much attention that I worry that my girls will often be neglected or not get as much attention and I wonder what will happen when my husband and I are gone, do I want to put that burden on the girls. It's honestly a hard thing to think about. Hope for the best, get him services, and take it a day at a time. I don't think there's a right answer on this.

    ReplyDelete
  16. We have one son who is PDD-NOS with possibly some OCD or Mood Disorder in the mix. We are only have one because he feel it's genetic and we don't know how we would cope with a second. That's our choice. Sometimes I wish for another child, but mostly, I am ok with that decision.

    ReplyDelete
  17. I have 2. Son is Aspie, 13. Dx at 3. Daughter (neurotypical) was born that year. We stopped there, because we had an obligation to feed, clothe, and educate these small people and wanted to be sure we could do it comfortably from a financial standpoint. I didn't want to shortchange MonsterGirl in any way, and I know that with a larger family we would have struggled.

    ReplyDelete
  18. i have four kids, we had our boys first j and g. then several years later we had our girls. g has autism and a few other issues. his younger sisters are developing just fine. did i worry that the girls could be like their brother? yes. but everything happens for a reason so i didnt worry about it much.

    ReplyDelete
  19. We always planned on having 2-3 kids. Our first was diagnosed with autism at 14 months. He was/is severe and we were so busy with therapy and keeping him safe in his own house that we vowed to not chance that again. Also our hearts were so broken and we just didn't think we could physically or emotionally survive another diagnosis.
    But once our son was about to enter kindergarten, we began thinking about it and we wanted that chance again to have another. We hated that autism dictated our original plans for more kids. So we began trying again. And then came our daughter. We were nervous wrecks all through the pregnancy yet had hope and as she rounded out her first year of live we began to breath as we saw her hit all her milestones. She's about to turn 3 and she's been wonderful addition to the family. She's also really brought our son out of his shell in ways no one else could. They have a special relationship and its wonderful to watch.
    I have more patience for my son because of her. Its weird but I appreciate him so much more because in many ways he's easier. There's no battle of wills, no whining, no begging, he's never hit me when he didn't get his own way. He's just my sweet boy.
    I'm glad we chanced it again...I just wished we had her sooner.

    ReplyDelete
  20. One of my biggest regrets in some way, too, not to have the 4 or 5 children we had originally planned to have. I have 2 children, eldest n.t and youngest child with severe autism. They are close in age. We don't have the support network of family and friends that you and your wife have, so our only time for breaks without autism-planning-and-prearation is a weekends respite once every 2 months. That's barely enough really..and we didn;t have any breaks for several years, right until last year. So generally life has been quite difficult. We have to work hard to give our eldest child the attention he needs and we have no us-time as adults. Although it's something I never thought I'd be prepared to do, I had a termination last year .I am very sad about that decision but I know it was the best thing for my family. So we have gone from wanting a large family, to facing the fact that we can't do that, we sily don't have that option that other couples have. I know anyone in my shoes would have done the same, but there's always people who will judge, because they haven't actually been through some of the autism related things I have. Everyone's experience is different. I enjoy reading your blog, identify with a lot of your posts and sometimes have to laugh too lol. Keep up the good work.

    ReplyDelete
  21. We have 2 kids, both on the spectrum, ages 7 and 4, we got the first diagnosis while I was pregnant and then the second once they decided he wasn't copying his brother. They are both very sweet boys, but total opposite. I have a calm child I could change his schedule anytime, but the other, no way. His schedule should never be changed. They are both a joy and I love having both of them, we are just lucky we had the calm one first, otherwise, we may of reconsidered.

    ReplyDelete
  22. We have two kids. My son turned 3 in Dec and my daughter is 20 months (they are 17 months apart....no, not an accident). My son is diagnosed with autism, and my daughter is NT. I was already pregnant when we found out about my son. We are done with kids. Thanksfully, I "feel" done, but even if I didn't we wouldn't have another. I have an obligation to provide the best care possible for both of my kids, and my son just needs extra time, care, money, etc.

    ReplyDelete
  23. I am in your exact boat. I have a 6 year old boy who is moderately autistic. Besides the fact that I was 38 when I had him, and now at 44 too old to think about it, I consciously chose NOT to have a second with fear of another child on the spectrum. I do sometimes wish our little family had more players, but on the other hand, I love being guilt free to do everything and anything for my boy.

    ReplyDelete
  24. I have a nearly 7 yr old with Aspergers diagnosed nearly 12months ago and i also have a delightful little 4yr old who at this point in time is progressing as he should. I really had no idea that S had anything wrong with him, i became a single mum when he was 18months old he was headbutting the ground but as soon as his father was out of the picture he stopped it so i put that down to stresses from the relationship breakdown. I'm soo thankful that i have my 2 boys S is a handful at times but he is sooo loving and sweet and my little T keeps me smiling through the hard days when the meltdowns are non stop.

    I'm soo greatful that i have found this blog and even though you're in America and i'm in Australia i dont feel so alone anymore

    ReplyDelete
  25. I have a nearly seven year old (boy) ASD and a three year old (girl) NT with developmental advancements. I had concieved the second before any diagnosis. My son was in IE for verbal delay. He seemed to function just below his peers. Nothing the school district thought indicated for sure that he had Autism. I wasn't aware of all the warning signs and there was plenty of things that he has grown into. Like jumping and hand flapping. I want a third. However, I worry about the risk of ASD. I am 7 years older, there is a chance it could be even worse and that makes me sad.

    ReplyDelete
  26. My low low low low functioning autistic son is 13 going to be 14 this year. He is our second child. Our first one was born in 97 ( diagnosed with tourettes in the 5th grade; toourettes in heavy with my 1/2 brothers and 1/2 sister ) and the autistic one was born in 98.

    But knowing the stress of having kids one after another, i was living and breating birth control when the autistic kid was two days old..........

    15 months later he was diagnosed with autism.

    and it's been mother f'in ride 13 years later.......

    BUT when the autistic kid was 7 years old..........i just told myself that lemme have faith.....i was more educated in autism than most parents, and i learned alot on my own......

    WWEELL...........the 7 years of strict birth control messed up the "productive system" and pretty much froze everything shut........my health was good, but my ability to "get pregnant" was luckily 15%.....

    i thought......."ok. mabye this is ggood."

    so now my kid was 8 and 7...........life was managable......as so far as a nonverbal kid, ieps, and what not......

    then last year, being a skills trainer for a child who ran me ragged ( SIBs, minimal verbal skills, high frustration level.).......for weeks i slept like a hybernating bear, thinking the job wore me out......

    well............apparently my body decided to OVULATE without me knowing and i got pregnant......lmfao..yup, the boys are going to be 15 and 14 this year.......

    long story short, imma be 40 if i deliver on time, passed all genetic tests, passed all medical checkups, im on high alert because of age and history of preterm delivery........

    am i scared of autism? id be lying if i said no, but i am so much more educated NOW......lets just say there's no way autism has a chance to drown this family again. im like a wicked warrior determined to squash any stemming, developmental delays, etc. *snicker*........


    and the boys are getting their little sister in July 2012

    ReplyDelete
  27. I'm an only child (aspie), I'm not sure how my mom could even think about handling another one of me. Maybe she'd be more accepting if she had two of me, maybe she'd think of some things as more normal when in double doses. On the other hand, she'd be a lot more stressed, and money would be tighter.

    ReplyDelete
  28. My son is my only child. I had him as a single mother, as his father made it clear early on in my pregnancy that I would be on my own. My son had been diagnosed and I was completely involved in his therapy by the time I met someone else. Before I could decide that I wanted more children with this new man in my life, I had genetic testing done on my son and found out that they couldn't rule out the possibility that I may be a carrier. I decided that I didn't want to risk putting another child through autism so I had a tubal ligation when my son was 8.

    ReplyDelete
  29. My sons are 16 and almost 13, both on the spectrum. Older one is more severely impacted, I would say in the middle of the range. He sounds like a 3-4 year old when he talks. But sweet and pretty laid back for a kid w/autism. Younger guy is more mild, but more of a troublemaker, sometimes intentionally and sometimes it's the autism. I would have liked to have a third but no way after the second diagnosis. Got pregnant while just figuring out the first one, so don't really know if I would have had the second if I knew the full extent of what was in store.

    My friend decided to adopt on the second child because of their first with autism. Perhaps something to consider?

    ReplyDelete
  30. My son is 8 with Classic Autism, ADHD, Epilepsy, pragmatic language delay... and my daughter (NT) is 15 gifted, one of the top in her class.

    Family dynamics???? well check out my sibling pamphlet https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnx3ZWxsd29ydGh0aGVqb3VybmV5fGd4OjZmNTAwMTM3MjZjNDBhODA&pli=1 A lot of it was done on the relationship between my two kids. Th thing that gets me through the day in my house is humor. Sibling rivalry runs rampant and I love it because my daughter begggggggged for a sibling! I guess you have to be careful what you wish for!!

    Our son was our 5 years in the works million dollar miracle kid. Infertility, surgeries, medication, miscarriages... you name it, we did it trying to get our second child. We had decided, after it took so long to get the second child that we wouldn't try for a third because of my "advanced mothering age". I also was keenly aware of the genetic possibilities of having another child on the spectrum.

    Where does he fit into the family dynamics? He is the constant possibility of dynamite that keeps us all on our toes! He is super cute and sweet but potentially explosive!!

    ReplyDelete
  31. We have 3 children my 13 year old has autism,adhd, and sensory processing disorder and is high functioning,my 10 1/2 year old has adhd, and our 4 year old is showing signs of autism,sensory processing disorder, and has speech delays.Our life can get crazy but no regrets.

    ReplyDelete
  32. I have been reading your blog for a few months now and I have just read this and here are my thoughts. My man CJ is my middle child, my husbands first. He is our man we realized that something was not right at the same age that you and your wife did. CJ is moderate a few other issues and semi-verbal. Right when we were beginning the diagnosis process we found out we were pregnant with Robbie. we were very anxious about the entire thing but would not change it. CJ is awesome and Robbie is wonderful. Cj being a big brother has pushed him to be constantly social (plus the fact I have them sharing a play room and bedroom). They learn from each other and fight with each other. Robbie is not on the spectrum nor is my eldest child. We love all 3 of our kids for who they are. I am glad CJ was not our last because now he is not only the little brother but a big brother and someone looks up to him. They will take care of each other like brothers do.

    Where does CJ fit in the family dynamic? Right were he should the one who keeps us on our toes the most. He keeps life interesting for us like only he can. We love him for it.

    ReplyDelete
  33. My daughter D is my only one by choice...at least now. When I was 13 I was diagnosed with PCOS (poly-cystic Ovarian syndrome) and told I would probably never have kids. When I first had her I always said I wanted to try to have more than one. I am the youngest of 5 so I wanted to give her lots of brothers and sisters. However I ended up having several miscarriages the hardest being my son when I was 4 months pregnant. After that my marriage to her father fell apart , and not long after I was diagnosed as Manic Depressive Paranoid Schizophrenic. When D was younger I saw some things were a little off but I didn't really want to see it as anything really wrong until she was 4 and began having severe violent fits (aka meltdowns) finally this past year (she's 7 now. Will be 8 in October) we were told she definitely has ASD. As much trouble as I had with my own mental well being after she was born ( I went through severe Post-partum psychosis. Thank God for my wonderful support system of my mom and sister at the time) I finally decided I didn't want to risk having anymore children. My decision was never because of her and her issues, it was always because of my own.

    ReplyDelete
  34. Our oldest child is 10 and has autism. Worked so hard to have a 2nd child so our 1st can have a company. After 4 years, we have our second. In little less than 2 years, the third and last one arrived. At least, he has two helpers if ever we are not around.

    ReplyDelete
  35. We have a 3.5 year old son, recently diagnosed with PDD-NOS, Oppositional Defiant Disorder, Sensory Integration Dysfunction and speech delays. I've had a rough time with him since day one. [The back story] ~> We tried for 4 years to get pregnant, 2 years of fertility treatments and after IVF we ended up with a beautiful boy and 4 day-7 embryos.It took a long time to decide to do IVF. We both believe in life beginning at conception. We decided that no-matter-what, we would give all of those embryos a chance at life whether it was one or ten. Well, after a year, we decided to start planning for the second embryo transfer, after all, we had four more kids to bring into this world! To our shock and surprise, out fertility clinic was undergoing an audit because some embryos were mislabeled and some were MISSING! We were assured that this was a problem from years before we were patients there. Long story short, I don't think we or the other families will ever get our babies back. This made me angry and immensely sad. I was also sad because our son would be an only child and the only grandchild our parents would have. Now, two and a half years later, I feel like that was a blessing. We are broke (paying for OT, ST and psych out of pocket), stressed out over whether or not we will have a house to live in next year, don't know if our son will ever be able to go to school without having a meltdown and I'm trying to figure out if it is worth me trying to work and bring in a little bit of money to relieve my husband who works 90 hours a week, spending 3 nights a week away from home. Honestly, I am too physically spent and mentally exhausted to even feel guilty anymore for not fighting harder to get our embryos back. That's the first time I've acknowledged that. Finding this blog has validated so much that I've been experiencing and feeling. I needed to read that my abnormal life is not really so abnormal. It's just different from what all of my friends are living. I've known for more than two years that something was not right, but have known definitively for only 3 weeks that our son has high-functioning autism. So, NO, I would not have any more children, even if we could. Not because I'm afraid that they would be autistic too, but because there is not enough of me to go around.

    ReplyDelete
  36. J is my youngest child. My DD is normal and older than him by 4.5 years. J is 15 now and I am so very very glad I had a hysterectomy after he was born. I would never want to bring another child into this, even if I did have another normal child. I feel bad for DD because for so many years our lives just revolved around J. Now DD and I are closer than ever and J has his own "apartment" in our house so I can keep "my" part of the house clean and not have J around all the time constantly talking, NEVER shutting up. I have a blog you might enjoy...
    http://type1anautoimmunething.blogspot.com/

    J also has had Type 1 diabetes for the last two years now. Try adding that to the autism! Ugh.

    Looking forward to reading more of your posts - just found your blog and am thoroughly enjoying it. It's nice to know we are not alone in our crazy lives.

    ReplyDelete
  37. My AD daughter is our 2nd, diagnosed soon after our 3rd was born and we are getting ready for our fourth. Her AD is mild and she's very high functioning and we don't plan to change our plans because of it (still plan to have more after this baby). We are however much more vigilant about behaviors/development now because while my dd was diagnosed at 2 1/2 I feel we should and could have done something sooner to help her.

    ReplyDelete
  38. This is how our kids were diagnosed...my first was dx'd with a speech delay at 19 months old when I was pregnant with my second. My first two are 25 months apart. We found out at a few days old that my second has a neurological birth defect and we started therapy for him at three months old. Shortly after that my oldest "graduated" from Early Intervention, his speech age appropriate and having passed all the ASD screenings. As time went on however, it became clear he was more then just a "late talker." By 5 he had an SPD dx and by 7 Asperger's. So we had two with special needs, both behaving in an autistic manner in some way. We had genetic testing done and found out my second child has a rare syndrome but in addition inherited what some consider to be an autism susceptibility gene from my husband (husband is NT). We did want more children and the genetic counselor seemed to think the syndrome accounted for my second child's global delays and lack of speech. We had number three a year ago. :) After he was born a research study offered to test my oldest and the baby to see if they inherited the same mutation as my middle child. I just assumed my oldest had, and the baby was having growth issues at the time so I suspected he did too. As it turns out neither of them do. However they both had/have GI issues so I started us all on the GAPS diet. The baby being younger has healed much faster and is growing now and developing in an NT fashion (I had him evaluated to make sure). My oldest is showing signs of healing but has a lot of bad habits to break, however his therapist says there was a very distinct point at which he became more focused and positive, and that was when we started the diet. The baby was going the same direction as my oldest, who also had gut issues as an infant, and I am hopeful we will be able to prevent serious issues with him. My middle child makes progress slow and steady like most kids with his syndrome. It's crazy here sometimes, for sure, but they are great kids. Anyway that's my story! More like a book lol

    ReplyDelete
    Replies
    1. what was the inherited condition?

      Delete
  39. Our son Luke is 7 and his autistic behaviors are a result of his spontaneous genetic micro deletion that we were tested for and do not have and which our almost 2 year old daughter does not have. We are going to try and have one more because 1, we are crazy, and 2, we want to have another. If we have another with some kind of issue we will do what ever we need to do. It's not easy, I'm sure it wasn't for my mom either who had cancer for 18 years and raised 3 kids by herself. You gotta roll with the punches.... Praying doesn't hurt either.

    ReplyDelete
  40. I have 3 kids my 15 year old daughter has Aspergers. It took several years to conceive her with fertility meds so after she was born we left it to nature. 6 years later I didn't think I could handle another child but didn't worry about it cause after 6 years I obviously wasn't going to conceive naturally any way. So child #2 was a surprise turns out shes my saving grace sweetest most helpful kid ever. My husband was desperate for a boy so I let him talk me into trying for one more Being unsuccesful by 35 and loosing an Overy, and other health issues we decided to give up. Well surprise aparantly giving up is the secret recepie since I then conceived child 3 a BOY. I got myself a hysterectomy after that so no more special surpizes. My middle girl had some speach delays but is now doing wonderfully. my boy is only 2 1/2 he has some peculiarities but has developed speach and I am confident I am just a paranoid parent at this point and he is developing apropriatly. While it was not my intent to have more I am glad I did as bad as it sounds she will have at least 2 little people looking out for her after mommy and daddy are gone. she has a built in friend. Yes I sometimes feel really bad for putting this onto another child but she's grown up with it she is thriving and will grow to have a better understanding of the personal identieties behind the label. We have a safty plan in our family and plans for dealing with things others don't but I think were just a different kind of family not a good or bad one. New issues and crisis happen we adapt. we love all 3 of our kids. However there are days when it becomes to much and mommy has a meltdown but we always pull through and I would do it all again (most days).

    ReplyDelete
  41. My 21 month old son was just diagnosed with mild/moderate Autism. He is my only child, and I had always wanted at least two kids. When he was dx'ed, the first thing that ran through my mind was: "No more kids". I wasn't willing to try again out of fear that I would have another child with Autism, perhaps even more severe and would take time and attention away from my son.

    This decision did NOT sit well with me, and has caused me to go back and forth mentally over it these past few weeks. I love and ADORE my son, and I would love to give him a sibling, especially if he will have trouble making friends in the future. I felt in my heart I may always regret not having more, but I would never regret the children I may have later on. I am nowhere near trying yet, maybe in another year or so, but reading this post helped me to solidify my decision. Thank you for it.

    ReplyDelete
  42. I am a 35 yr old mom of 3 children, 11yr old boy with ADHD, 4yr old boy with Autism-PDD and a 3yr girl Autism-ASD. Their life and quality of life if my life.

    ReplyDelete
  43. I think we consider ourselves lucky b/c we had a 2yr old girl when we had Chase - and then had a surprise pregnancy again when our son was 10months old - and now he is 3 - and I am super happy I have the older sister at 5 and his little brother at 1 1/2 - b/c our youngest is completely opposite of what Chase was at his age - but those 2 keep him socially stimulated whether he wants them too or not :) - but like I said - we didn't think he was autistic until he was almost 2! so it was almost better for us to NOT know :)

    ReplyDelete
  44. I have 4 children and the youngest (now 9) has Autism. If he was our 1st child he wld have been our last. We LOVE him to pieces but it is a 24+ hour job w/ no breaks. Our biggest worry is when we get older or if God Forbid there was a tragedy & we were both gone. Who wld care for him? Its not fair to put this on our other children. I respect everyone's decision whether they have multiples or not but this lifestyle is not for everyone--emotionally and financially. We also don't have the support system. Oh well, such is life. But he is our whole world!

    ReplyDelete
  45. Hi, I Have 5 Children, My eldest daughter is 6 an a half, my second daughter is 5 yrs old, Ryan my first son is 2 years an 9 months (he was offically diagnosed with classic autism 29th november 2011) my second son is 20 months old an my youngest is 5 months old. We originally knew nothing of Autism untill assessments an tests were happening on my son Ryan, i was always concerned about why he wasnt doing things but was always told oh he's a boy he's being lazy boys are always late developers. So we carried on an took it in our stride. Our girls had delays but no one really said anything. so after ryan i fell pregnant again when he was 4months old. We didnt know anything at this point an was over joyed that we were having another boy we were always like oh great someone for ryan to play with as our girls have eachother. wasn't till a couple of months after my second son was born an ryan was around 13-14months old that someone finally listened to me an heard what i was trying to say, he was delayed in sitting up, rolling over, he still couldnt stand, his eye contact was fading fast an the little hand full of words he did say had gone to nothing. but anyway cutting a long story short lol after tons of tests, appointments an assessments an of course waiting he was diagnosed, during this process of waiting i again fell pregnant with my youngest who is now 5 months an is again another boy. at this point we still wasn't sure about Autism it had been tossed around in a few consultations an tests as a possibility. At the time i was afraid to speak about being pregnant again afraid of the response i'd get from everyone involved. So i then carried on through the process of getting an offical diagnosis heavily pregnant (how i still have sanity is beyond me lol) but anyway again cutting it short lol. since Ryan was diagnosed it has come to light that both my daughter's may also be on the spectrum there school aproached me as they were at the meeting when my son was offically diagnosed. Anyway since then both my girls have had an Autism assessment an we have been told we are probably looking at "high functioning Autism" ok it was upsetting but somehow i felt a release of ok im not insane there is something, an another thought of ok we cope an get by with Ryan who has classic autism then ok we can do this to. my younger 2 boys are still a little young yet but ya know something nothing suprises me anymore, life is all around tests, appointments an so on an so on lol. i know i have rambled on like a nut lol an none of it makes real sense but im not used to really speaking out this is a first for me lol. but what i did want to say is. i understand why you chose not to have more children. it was for the same reasons i chose to stop. but like in my family no 2 children are the same. an yes its hard work but the fact ryan has me, his daddy an all his siblings whether they end up with offical ASD diagnosis or not means he is never REALLY alone. I don't judge the fact you chose not to have more if anything if i was in your shoes i would have probably made that same choice frightend of having that heart break feeling again infact im still frightend of that feeling. but once you have faced it once it makes having more easier because your not so in the dark an you already have that know how of what your doing. Anyway as i've said i've rambled way to much lol if anyone wishes to speak with me at all i am on facebook as "leigh-anne thomas" i am also on Autism daddy's fb page aswell.
    again im sorry for the ramble x

    ReplyDelete
  46. I have 4 children and the first has PDD-NOS. Thank goodness so far all of the others have no issue other than than number 2's ADD. I was told by family that he was fine for years. It wasn't until my grandmother died when he was 7 that I took him to a therapist because I saw things that didn't add up. But she gave him a clean bill and sent us on our merry way. Three years later and another therapist and we get the diagnosis. If I had known I would've chosen differently. My parents help with the oldest and if not for them I don't know that we could do it.

    ReplyDelete
  47. I have two sons who have both been diagnosed with autis. My eldest, who is 6, is considered highly functional, but I have a feeling he has aspergers.


    My other, 4, is the typical child with autism. Walks on his toes. When he gets over stimulated, he either jumps up and down or the typical stimuli with his fingers. The boys are complete opposites and have different tastes.

    Life hasn't been easy for the boys (or myself) because I continuously worry about them. My eldest started school last year and the older kids made him eat stones and sticks, pulling his pants down in front of everybody. What people don't realise, he does feel those emotions, but he bottles the rage inside, as he's naturally a sweet boy. My other son, was born with a lot of energy and aggression.

    I worry about both, as mentioned above. My eldest has all the sensitivity and compassion and my other will not allow any person (child or adult) to walk all over him.

    My eldest completed his IBI and my youngest is still continuing the therapy. I'm hoping that my fears are just that and not reality. The world can be cold and cruel, but my ex and I will always be their biggest supporters.

    ReplyDelete
  48. My son is about to turn two this month and is now undergoing assessments for autism. He developed completely normally until 18 months where he missed three milestones at his check up, pointing to three body parts, stacking three blocks and saying 20 words (at the time he had about 6 or so). After 18 months he lost his words other than mama and dadda which he does not use in context and started to dance in a circle, toe walk, look at his fingers, and flap his hands when excited. he babbles all the time but i cant understand anything. he communicates his needs non-verbally by bringing us what he needs or wants (i.e. a cup for drink, a plate for food, etc) i took him back to the doctor at 20 months but he told me just to wait and see...at 22 months i insisted something be done and they sent him to a ped and a few other assessments to try and figure it out. So far they have only told us that he is speech delayed and delayed in all areas of infant development about 4 -6 months but that it is 50-50 for autism. I havent slept well, eaten well of stopped crying in over a month.

    Before this we were actively trying to conceive but having difficulty as I had just come off depo which can take a long time for fertility to return. Since the tests have begun i've stopped trying because im terrified of what the tests will say about my son and what diagnosis another child could receive. I dont want to feel the way i feel now ever again. I worry that if i had another child i wouldnt be able to look at it as a beautiful, newborn baby but more of a "ticking time bomb" waiting to break my heart all over again...and i know that sounds horrible but evil but i am very heartbroken at the moment.

    Deep in my heart i know ill always want another child and my husband is much more positive than I am and wants another child regardless of the diagnosis or what another child could bring. My parents also think another child would be great for my son to have a sibling but they dont have to live my life and dont understand my fears.

    I want to thank you for your blog. It made me laugh when the world seemed dark and depressing and this post has given me even more to consider once the fog that I am in subsides a little bit. you're doing a good thing here. Thank you.

    ReplyDelete
    Replies
    1. a few days after i posted this i found out i was pregnant...now im just terrified. but again, thanks for the blog

      Delete
  49. I have 5 kids. My oldest has autism. He is 13. The other children are 12, 6, 4 and 10 months. So far, none of the other children seem to be on the spectrum but my 12 year old has ADHD. I am happy I did not let my oldest son's diagnosis stop me from having more kids. However, he is not as severe as your son- at least not any more.

    ReplyDelete
  50. I have 4 children. My eldest, Matthew, has autism. Matthew is 12 and a complete joy in my life. He has come such a long way over the years and continues to make progress all the time. I don't believe he'll ever be to the point that he is considered Aspergers, but that's alright. My other children are 9.5, 3.5, and 20 months. I was already pregnant with my 2nd child when we started the road to a diagnosis for Matthew. Unfortunately my first marriage did not work out, which is why there is a gap between kids. There was really never a question if there would be more or not, there's enough love to go around. Matthew does get annoyed with baby cries and little sisters toughing his things, but overall he has done well. He lets them cuddle to him during movies sometimes and tries to be a good big brother. Matthew functions a lot like a normal 8-9 year old at this point, so he holds his own fairly well.

    ReplyDelete
  51. I have six kids... 5 boys and my youngest is a girl.. My two adult boys are from a previous marriage and my four (13, 12, 7, 4) are from my current hubby. Isaiah falls right in the middle being the 2nd oldest of the 2nd bunch. He is the only one on the spectrum from my family due to a traumatic birth and losing oxygen. I decided to have two more after him so he could be a big brother and learn to communicate better. Since he has two younger siblings, he's learned to use his words to communicate his frustrations esp when his baby sister is touching his stuff. He's 12 now and is so much easier than when he was 6 or 7. Every now and then, he still screams when he is not getting his way... But at least now, we are able to tell him to use his communication book or use his words to tell me that he is frustrated instead of the baby tantrums. Life is good and my family would not be complete without him... We love him just the way he is - quirks and all !!!

    ReplyDelete
  52. I have two children on the Spectrum. My first was high functioning, so I thought we'd be OK. I expected my son to be NT, and he wasn't. His condition is worse than my oldest. Then, I wanted another girl. She's an absolute joy, and so far she's NT. I loved all my children. I wasn't going to let a little thing like Autism ruin our dreams for a family. :)

    ReplyDelete
  53. "Our lives revolve around Kyle and we live & die with his moods. When he's having a great week, we all are and we he's having a rough week we are all at each others throats." Yeah - that's my life, in a nut shell. But I know I cannot handle another - not emotionally, physically & definitely not financially. If you decide for another - kudos to you - people somehow do manage.

    ReplyDelete
  54. I think we've 'bumped into each other' on other blogs and facebook pages :D I have three boys. My oldest (8) has Aspergers, one of my twins (5) has PDD-NOS and my other twin has 'classic' autism but is making tremendous progress (his 'communication' skills may be limited, but he is verbal. He is not yet potty trained, but he can read better than the average five year old. We're getting there :D). I want a daughter, always have, but I'm just not sure we've got the time, energy, or financial security for another baby. My husband was done after the first, so he isn't on board with another. And overall we're just so damned tired that I can't imagine our marriage surviving the first six months with a typical newborn--FORGET about another SN child! But I AM glad we had the twins. Our 'classic ASD' son is the reason we got all three of them evaluated--our oldest Prince would most likely have continued to struggle with his issues, with us blaming our bad parenting and his behavioral choices rather than understanding that with Asperger's he has different needs. He's spent the past year in therapy and has a wonderful second grade teacher, and with those things combined we've seen him blossom from an isolated, miserable little boy to a child who will strike up conversations with strangers and is proud of his quirky interests and abilities. He never would have had those opportunities if we hadn't sat in a psychologist's office with her explaining which of our younger son's behaviors meant autism and us repeatedly saying 'but our oldest does that, too, though not to the same degree . . . ' :D I have always believed that everything happens for a reason, and I firmly believe that my sons were meant to be brothers so that each of their lives would be better.

    ReplyDelete
  55. I am new to your blog and just love it! I have two children on the spectrum. One son severe, completely non verbal, similar to your son and a daughter moderately effected with some clear words. I was told I had only a five percent chance of having a another child on the spectrum after my first. Well, we fell in that five percent. I wouldn't trade her for anything! She has brought such joy and humor to our lives. Each child has they're own special gifts they bring to their families. In saying that I know there are people out there that are constantly asking how do you do it and think they could never handle it. Well, once you have a special needs child or two you adjust. The Love you have for them just takes over.

    ReplyDelete
  56. My little 9 year old boy was our second child. My daughter is 14 and was a super child hitting all of her milestones early and no issues. My son began regressing about 12 months of age as best I can remember. Been a lot of water under that bridge since then. He is almost...by the descriptions of your son, nearly identical to Kyle. Non verbal, seizures, sounds that Kyle makes are like the sounds my son makes. When I first listened to the audio of Kyle, I wondered if he and my son would understand each other if they ever met? Brother from another Mother as they say...lol... Just wonder, it would be nice to have a friend who speaks the same language:-) My son will be ten in August. Thank you for your blog.

    ReplyDelete
  57. I just found your blog but I was talking about this with my fiance and friends today. We have 1 child, our daughter is 2.5 years old and was diagnosed with ASD. She is so active, into everything, and smart as hell. We are on the fence about having another child, mainly because I don't know if we can handle 2 sped kids. I go to work at a group home for mentally ill adults, which can include ASD (and does) then I come home to it. It's not easy but I do feel robbed of being able to have a typical parenting experience. Not just now but down the road. So I don't know if we will, I want another one but what if our genes just make autistic kids? We both have some issues so idk....

    ReplyDelete
    Replies
    1. I don't know your situation, but I just wanted to say that...your day will come when you can relax. For years, my greatest goal in life was to be able to take a nap during the day, or watch a movie. lol Now thankfully, I can, but for the longest time, I thought that was an unachievable goal. I look back sometimes and wonder how in the world I survived those early years (having 3 kids, all 2 years apart, the middle child with autism), but I made it through & so will you. By the way, mine are 10, 12, & 14 & all as different as night and day.

      Delete
  58. I'm a new follower and during my searching, I had to read this post. This is so resonant for me. I'm actually a step-mom to a 13 y.o. boy who serve-- is non-verbal, non-potty trained, highly medicated for behaviors, diet controlled, and has been given the receptive/expressive capabilities of a 12-18 month old. I have an almost 2 year old SON who I feared so much for I was in a deep depression all throughout my pregnancy and his first year. Now I am pregnant AGAIN (a planned pregnancy but a gender surprise) and at 27 weeks along, my fears are creeping up on me to the point that I feel like I made a mistake and that something is going to be wrong. I'm afraid of ultrasound, labor drugs, GMO food, my cell phone, it's ridiculous the speculations of what causes autism and what I should be doing to prevent it. I wanted 4 children when I met my husband, but after experiencing joint-custody of his son for the last year I don't know that I can worry like this over any more children. I'm angry. I feel like I got myself into something I didn't understand and if I had I wouldn't have chosen it. (we are military and met and got married overseas, so I didn't know his son despite knowing "about him"). our joint-custody situation doesn't seem to work well for him with having a baby in the house. it stresses him out and he's so uncontrolled my husband demanded we lock our at-the-time-infant son's door at night so he wouldn't get suffocated in his crib. He doesn't open up like some other kids do with having siblings. Perhaps they're too far apart and I know adding another baby is going to be more stressful. At what point do I give up what I wanted? I already have to a point. I'm afraid of a child of mine on the spectrum now knowing how hard it is to deal with the 1. I admire the parents who love their children the way they are, and maybe it's because I'm not his parent, but I have yet to find love through my own anger. But life is about choices. I married a man who chose to stay involved in his son's life and accepted this role for myself. We don't know why he is Autistic and every doctor I've ever talked to told me it's not likely my children will be too. But it's scary. It's scary as hell. -Missy

    ReplyDelete
  59. My first son (Liam) was born 5 years ago and he is severely autistic. My husband and I debated having another child. I am now pregnant with my second son. I am scared of what the future holds sometimes....

    ReplyDelete
  60. We have three boys 13, 3 and 1 year old. Our three year old is PDD-NOS, we were finally given the "yes there is something wrong with your child " at the baby's one week check up and while our three year old was having a melt down. I am very grateful for our third child because if he would have not had that appointment who knows how long my other son would have gone undiagnosed. At the same time this past year has been the most difficult of my entire life! Many times I don't know how to divide my time. I fear I may eventually have resentment from my other two boys because my boy with autism comes first. I don't know if things are getting easier, or if I have become accustomed to this lifestyle but things don't seen as difficult as they once were. Don't get me wrong, there are still many days I cry because I feel so overwhelmed but those days have become fewer and further apart.

    ReplyDelete
  61. Our boy is our second of (so far) four. He is our only son, and our only child on the spectrum (although our middle daughter had a speech delay). He is diagnosed with severe autism. He rocks. I get the thing about having more children. Every time we've been pregnant (twice) since understanding what was different with him, we've gone through feeling guilty about feeling relieved that they've been girls (since a brother for our boy is much more likely to be on the spectrum than a sister).

    The way we look at it, though, if we were to have another boy (or another girl) on the spectrum, it would be for a reason. We count our blessings - he is getting more and more vocal, he tries new food from time to time, and he is beginning to make friends - with our trials - he likes to paint, he has begun to hit and kick, and he is already nearly as strong as my wife.

    We worry about what will happen when he is stronger than even me. I work at a residential school for kids with challenging behaviors due to a variety of diagnoses (from autism to brain injuries, genetic disorders to abuse victims). The school does great things, but it is not a place I want any child, let alone my child, to end up.

    We do deal with resentment from time to time. His older sister is more motherly with him. It is from his sister that is only a year and change younger than him that resentment comes. She wants to have chicken nuggets or graham crackers with peanut butter most nights just like her brother. She wants to take a bath first and have her own room just like her brother.

    Uhm...there was more. Dunno now.

    ReplyDelete
  62. Luke is only child, he is five now.
    The truth is I hadn't planed on having any children. Then we had Luke. He was only a few weeks old when we made the decision not to have any more children. So by the time 'luke isn't talking' became an issue, our family size was already set in stone...
    Before we know how are our lives would be, I had no regrets about getting fixed.
    Now that we are trying to raise a child with autism, I feel like the decision to stop at one was the BEST decision I EVER made in my life. Really. I mean: could we handle two Lukes? I don't see how. And if a second child had been born without issues - how fair would that be to them: "I know you need love an attention, but we Luke needs us more" ?
    So congrats to me for my one and done attitude.

    ReplyDelete
  63. I have three children of my own. I say "I" because I am now remarried & my husband an I have seven altogether. Yeah I know...that's a lot. lol Anyway, Luke (with moderate autism) is now 12 & my middle child. My kids are all roughly two years apart & while we knew something was a little different about Luke, we didn't yet know what was going on before my youngest was born. That said, I'm honestly not sure if it would have changed things back then or not, in regard to having another child after him. I will say that I think in our family at least, I believe it helps to not be the only child. He has an older sister who has always understood him & worked around him in certain areas, and a younger brother that for years, I think woke up thinking "I wonder how mad I can make him today". lol Just like with everything else in life, each passing year has it's ups and downs & changes when it comes to Luke. He is verbal, although he was six before he ever actually spoke TO me. He would recite movies & the like, but wouldn't communicate with us verbally. My children are 10, 12, and 14 now, and they are all very close in their own ways. Thinking back on the early years though, I'm not even sure how I survived some of those times...much less how I would have managed "two Luke's" as you put it in regard to your own son. It seemed to take FOREVER to break through with him, he wasn't potty trained or verbal until he was six, and he seemed to be able to go days back then without more than a couple of hours of sleep. Somehow though, we survived so now even on the worse days, I just think...Lord knows if I made it through before, I can surely make it through this little day. :) In our situation, I think Luke not being an only child has drawn him out more & helped teach him that "the world didn't always revolve around him" if that makes sense, but just like with autism itself...each person is different from the other. We are a tight bunch, but we do try to keep certain things separate. For example...if one child had a school play & we didn't think Luke could handle it, one of us would go out with him or keep him home so that he wasn't taking away from them & it works both ways. The other kids are great with him, but they have their battles like any other siblings. Over the years they have helped out some here & there, but I never wanted them to feel like he was their responsibility so in all honesty...they probably help less than the average child in an average family would help their sibling. We just take it one day at a time, one event or milestone at a time, with each of them...so far, so good. :)

    ReplyDelete
  64. My son was diagnosed at age 4 with Autism. He was a very well behaved toddler and preschooler. We wanted our son to have a sibling. We felt that he would learn a lot about life by a sibling relationship weather that child had Autism or not. If we could not have gotten pregnant we had been making plans to take a foster child to share in our families life. We got pregnant and this last summer gave birth to a beautiful girl. our son had some regression during summer school right before I gave birth, We think something happened to him at that school. No proof. When he went back to normal school year he slowly came out of his regression and exceeded all his year goals and more before second semester. Anyway, We had his sister and the change of having a sister was a lot. We had to get used to baby being part of the daily routine. After about 3-4 weeks he accepted the changes. Although he loved her from the first day. We gave him a gift at the hospital he tried to give it to her,he tried to help with a lot of things to be near her. He was not pleased with my time being divided. He began tantruming. We are working through all his new behavior issues, but we see good things with him trying to talk to her, trying to help care for her, play with her, he even tries to share his toys with her. (amazing).We are glad we had her. I think it was just as important to us to have a second child. But We just felt weather or not both kids had problems or one with one without they could still learn and grow from each other. I probably wont have a third. The two are all I can handle. It has increased stress, It has been really hard, It has had good moments and bad moments, It is really hard to do things for the baby like tummy time ( it gets done). It has been worth it.

    ReplyDelete
  65. Our 10 year old has Autism, our 8 year old does not. I often regret not having a 3rd child but we were older and we were afraid of having another child with a disability that our 8 year old would have to be responsible for when we're gone.

    ReplyDelete
  66. I stumbled upon this blog. I too was worried and was severely depressed while pregnant with our first son because my husband's brother has a son who has severe autism (although he was 2.5 at the time I was pregnant and we didn't know just how severe he was). I was also so depressed throughout my son's first year or two of life until I was sure that he did not have autism. We then went on to have a surprise daughter two years later. Both of our kids are NT. I am wondering what the chances are of having a third child with autism when the first two (with the same husband) are NT. Does anyone know?

    ReplyDelete
  67. Thank you. I stumbled across this post because of your facebook Q&A notes. We realised our son was autistic when he was two, he will be four this year. At that point I didn't want anymore children. After many discussions I'm now pregnant with our second. We are as risk of downs with this one but that's a whole other story! I feel that this baby is for our son, I feel our life together can be very intense and the world revolves around him, I'm hoping this baby will break that up a bit. Of course I'm worried about what the future holds and I do wonder what direction this baby will take our journey on ;0)

    ReplyDelete
  68. Hello Daddy,
    My oldest son has Asperger's, but I didn't know that when I became pregnant with his little brother just nine months after I gave birth to him. Then I gave birth to his sister four years after that. My first is the only one of my three with Asperger's the other two are NT. I am so glad I got pregnant so quickly after my first, because my sons were the best of buddies and they still are. Even if I would have known my oldest had Asperger's it wouldn't have changed my mind about more children. However, he wasn't officially diagnosed until he was 12 before that he had multiple diagnoses. He started therapies at the age of 18 months and these continued on until his 6th grade year at which time he was diagnosed with Asperger's. I would like to say that having his brother and sister around to show him proper social skills has helped him immensely. He is now a sophomore at the community college and he catches the public bus to get to school five days a week. He is a straight A student and has a photographic memory, he blows my mind.

    ReplyDelete
  69. It is really great that you wrote this post. I just found it today, but when our son Andrew who is severe on the spectrum was 5 years old....we were trying to make the decision if we wanted to have another child or not. I was an absolute no for years out of sheer fear of what we might get. My husband always wanted another child. One day a woman told me that her biggest regret was not having another child, and it really hit me. Soon after that, we decided to go for it and have our 2nd son James. He also has Autism, on the more mild side. I am so very glad that she said the words to me that she did. James adds so much to our lives, and to Andrew's life as well. I can't imagine having stayed in the fear and not having him in our life.

    Your words here are going to help many others in making their decisions. I am sure it already has based on the comments I have read. Very well done Autism Daddy. :) Wendy (Bugaboos Treasures)

    ReplyDelete
  70. Hey AD .Answer to your question..i have 4 children :) 2 from a previous relationship my oldest is autistic he was diagnosed at the age of 3. My second one is not on the spectrum. After me and the boys father seperated I never imagine to meet a man that was accepting with my "cargo" especially with my oldest.He was understanding and still wanted to have kids with me. I always wanted a big family coming from a big family it was norm for me. So we had two more my third he now has a speech delay and in therapy..doing well..and my fourth she has shown no signs in being on the spectrum thus far. For my oldest having siblings has definitely helped him in his interacting with other kids. My husband and I treat him the same as the others. At times when my oldest needs sometime on his own we give it but for the most part he hangs with his siblings :) Veronica

    ReplyDelete
  71. I feel the same regret.I always wanted a big family since I was the only child but life turned things around.I married at 28.The first 5 years I decided to not have any baby .Then when I wanted to have one with all my heart I had to wait almost 4 yeras untill got pregnant.For the last 6 months of my pregnancy I was in fear of having my baby with down syndrome cause the doctor said bacause of my age it was a big possibility.I think
    that the fear was the reason that hold us down.But I regret it so much.Cause my son is most of the time alone just like I was when I was growing up.

    ReplyDelete
  72. we have 2 childern logun our oldest has some anxity issues kaleb is on the mild end of the spectum. the way i feel is this no matter how many childern u have the house lives and dies on the autistic childs moods if k is having a good day we can breath if all hell is breaking loose logun isnt getting what he needs from us we live day by day no matter how bad it was we always say we start over tomarrow... we have talked about another and i get the same ? from every well what if the next one is like Kaleb well if we have one and is like kaleb we will do all we can to stay sane I love him the way he is and as hard as it is it is part of who kaleb is and i wouldnt have him any other way

    ReplyDelete
  73. My Baby girl is 3 and a half. She was dx'd informally with PDD-NOS by our local Infants & Toddlers Program at 2 and a half and later with ASD by the Kennedy Krieger Institute. After what seems like a lifetime of infertility and loss, my husband finally brought this baby girl into the world when we were nearly 40. Our "advanced age" combined with my infertility struggles and our fears of ASD rearing its head again have put any attempts at another biological child on the back burner (the one way, way in the back that you never use).

    We are foster parents and have been since before my baby's dx. Despite having 10 children move through our home over the past 2 years, we've not encountered a situation that made adoption a possibility. In a bizarre twist of fate, a little girl who is about the exact same age as my daughter and who looks like she could be her twin was just placed with us. At 3 and a half, she is nonverbal and not potty trained. There are what I believe to be a few stims present. In essence, she presents exactly as our daughter did 1 year ago...and we would love the opportunity to raise her if it presents itself. So, despite our best efforts to avoid tempting fate again, fate appears to have brought us another dose of ASD and, we've both agreed to "sign up" for as long as this little one needs.

    ReplyDelete
  74. My 20-year old son was diagnosed Asperger's/ADD/ADHD and anxiety disorder when he was in the 5th grade. We had relatives who told us when he was 2 that they thought he was autistic (sound familiar?). We were in total denial, probably the best thing that ever happened to my son, because our method of coping with his "differences" was to do whatever it took to survive his "idiosyncracies" while at the same treating him like "any other kid." Clearly he is high-functioning and our world is galaxies away from yours, but like you, I often think back and wonder about "might have beens". I feel like you are asking would we do it again having known we might have had a second child with similar problems to our first? I honestly don't know. Maybe the answer is no and that is why our son wasn't diagnosed until much later, after we had already had our daughter. Our daughter came along when our son was two and a half. She is crazy intelligent, focused, and capable, about to graduate #2 in her high school class of 450+ and has already earned about 50% of her college expenses via academic scholarships. Her declared major -- all level special education. She works daily with the special ed kids in her high school as part of a "Peer Buddies" program and is usually placed with the autistic children because she is one of the few who is successful in dealing with them (and enjoys it!). She has a special heart for autistic children because she knows what it's like to grow up alongside someone who is "on the spectrum". It's funny how God works those things out. I have pointed her to your blog because I told her that as a special education teacher she can only benefit from having insights into the lives of the parents of her future students. Your blog is the most honest, real, funny, and touching thing I have read in a long time, and frankly is a gift both to me and my daughter. So thank you for that.

    ReplyDelete
  75. We have at least 2 children with Autism at this point. Our oldest son has a form of Autism much like your son's. My husband and I were already expecting our second son when it became apparent that our first, who was about 2 years old and nonverbal (he still is at nearly 6) at the time, had Autism. Frankly, we used to figure that our eldest son's having Autism had to have been a long shot (genetically speaking), since no one in our families had ever had any similar developmental delays or anything like that (as far as "environmental" factors, I don't know...I've always been health-conscious, was an accomplished athlete before my pregnancy slowed me down physically, never smoked nor drank, etc...I didn't even get pain medication during labor because I thought it might do more harm to my son than it was worth for me, and even though both my husband and I were nuclear technicians in the Navy, we received less radiation from our ship's largely shut-down/cooling reactors than Navy pilots do from the sun). Considering our good health, we figured what the heck... we had wanted several children to begin with, we were young, and we thought giving our sweet boy a brother or sister would help him better interact with other children, especially since we had planned to homeschool our children in a rural environment anyway. Well, much like our first boy, our second son seemed "normal" until we were expecting his sister. He regressed much like his brother with speech and is now nonverbal too. Our daughter is still only a newborn, but we are preparing ourselves to accept the probable likelihood of her having some sort of Autism too. So, yeah...we took a chance and tried to realize these dreams of children we made before Autism came along and changed them a bit. Now, we won't be trying for anymore babies so that we can raise our three with better resources.

    ReplyDelete
  76. We have four children, three boys and a girl. The boys: ages 10, 8, and 7 are all diagnosed with autism. My youngest son, who is severally autistic, was diagnosed first at age two when I was eight months pregnant with my daughter. My other two boys were diagnosed with "mild" autism and dyslexia in the first grade. The children are all very close in age with my oldest being only 18 months apart. I also suspect dyslexia with my four year old daughter. I always wanted a large family and in retrospect am glad we had the kiddos so close together. If I had know about the diagnosis earlier we would have stopped. It hasn't been easy but we take it day by day.

    ReplyDelete
  77. I have a 5 year boy diagnosed with autism. I am still waiting for the day when he will call me 'Mommy'. Me and my husband have decided not to have any more kids until our son gets better and is more independent. Your story so much reminded me of ours. Our life revolves around Rishan and we dont want to split our attention..

    ReplyDelete
  78. We have a 4 1/2 year old son with mild autism, and a 18 month old baby girl. We always wanted two kids, and I guess that never changed once we new our first was a challenge. We probably went into denial a bit and stuck our heads in the sand over the issue of having another on the spectrum. Because we really really would NOT have wanted another kid on the spectrum, one is hard enough. And we were lucky, so far, as our 1 year old seems normal. I definitely wanted the balance that the second child gave us, although, it is never truly equal. We still and probably always will worry more about our son, and that really concerns me, in that she might resent us for it one day. She was also our insurance policy, as the one thing that kept me awake at night was "Who will look after him (if he needs looking after) once we're gone?" She will probably resent this responsibility also. I wanted to say, try not to regret your decision. It was possibly the right one for you. With a severely autistic kid I can't imagine that it would have been easy or even possible to give another kid equal attention. If you need balance in your life, there might be other ways to find it. Good luck to you, you seem to be doing a fantastic job with the King.

    ReplyDelete
  79. Hello! We have two sons. The oldest is typical developing, 9 years old. At age 2 we thought he had a speech delay then all of the suddent started talking non stop. Our second, Brody, was diagnosed at 26 months. It was devastating. But he is goregous, loving, adorable, giving, sweet and kind. We love him so much. He and his older brother are best friends...they are now 9 and 6 and get along famously. We'd love to have another, but not sure if it is in the cards for us.

    ReplyDelete
  80. My 1st child is nonverbal autistic..diagnosed at age 3. I left it in gods hands that we would be able to have another child. Hopeing that the 2nd would not have autism. Originally the 2nd child was diagnosed too, but some how with all the ABA and speech therapy worked out of the diagnosis. We did not have all the info. we needed when our 1st child was diagnosed, it just wasn't there to find. I know at least, when I die ,they will have each other. My 1st child although high on the spectrum..he can somewhat communicate though sign language or his speech devise and gestures. At 15 years old he is just learning to spell and can communicate more. DON'T GIVE UP! :)

    ReplyDelete
  81. We have a 21-year-old son who is a very high achiever. My mother-in-law worried when he wasn't talking much by 18 mos. At 20 mos. he started speaking in sentences. He is typically developing. Our 19-year-old spoke a few words by 15 mos. but then dropped them. He didn't answer to his name (but, I knew he could hear because he reacted to other things), didn't play with toys or other kids (even with his brother who tried so hard to engage him). He was diagnosed with autism at 2-1/2. We intervened intensively (back in 1998 that meant lobbying for ABA because no one knew much about it here) and were consistent with every behavior plan for ten years. We've had psychologists ask why he wasn't diagnosed with Asperger's. Made me wonder about the psychologists and how much THEY knew about autism because in the DSM-IV it clearly stated that ASD meant there was a language delay. With Asperger's, no delay. When our youngest was six and had a SUPERB 1:1 aide in school, we talked seriously about having another child, but then decided that, 1. it wouldn't be fair to our oldest who already had to sacrifice a lot having a brother with autism 2. it wouldn't be fair to our son with autism who needed our attention 24/7. I have often wondered, however, if we would have had a second child if our first had been diagnosed. I cannot even speculate. However, with 2 kids and the great amount of time we have always devoted to our son with autism, I tend to think we would have made the same choice as you and your wife. I remember very selfishly thinking, however, that I wanted another child so we'd have a greater chance of having more grandchildren. :) Crazy, I know. Our youngest is very high functioning but has made it clear that he does not want to get married and have children, but that he'll be a terrific uncle some day. No pressure, oldest son, but we're counting on you for grandkids - a lot of them. We have NEVER made our older son feel responsible for his brother. We only asked him once to "babysit" and that was just last summer. He wasn't brought into this world to be his brother's keeper, yet it seems that we must have done something right all these years because he loves and respects his little brother and when we had the very emotional conversation recently about what role he wanted to play if both my husband and I were to die, he said he felt comfortable being a guardian at age 25, but if we passed before then, that he still wanted to have direct input (along with the relative named as guardian) into what's best for his brother. He also said no matter what, he wanted his brother to live with him. Don't ever regret your decision not to have another child. You made your choice for a reason and your son is one lucky boy to have you both.

    ReplyDelete
  82. I have 3 boys youngest boy was diagnosed with Autism at 4 years old, if he was the first he would have been the last - simple as.

    ReplyDelete
  83. I have a 5.5 year old boy who wasn't talking as much when he was younger, but we attributed it to the fact that my husband is Greek and his mother is only Greek speaking. We had also read the book Late Talking Children by Thomas Sewell and blew it off. When he was 2, he started reading. He would recognize ".com" everywhere and started off reading advertisements, which I just thought he recognized from commercials. Right before he turned 4, I turned to the school district and the early childhood special ed assessor told me it sounded like Type 3 Hyperlexia. I looked it up and it was like someone had written an article about my boy. There's still a chance he could be autistic and we are in the process of getting him through that process now. We aren't really trying hard either way.

    ReplyDelete
  84. 4 kids....my 2 yr old has ASD/moderate diagnosed at 2yrs old after getting an evaluation for his speech delay that everyone reassured me was normal for ornery "active" boys. BLEW MY FKN MIND. At that time, already had a 1 yr old and pregnant..........SO, overwelmed with little nonverbal kids now. 1 yr old is hand flapping, and not talking as much as she should (YEP, getting her evaluation process started on Monday). Newborn had to be weaned off the breast because my ASD kid would toss objects at me everytime I nursed. I have a 14y.o. who is fine from a previous marriage. If I had known my son had ASD, I would have NEVER had more kids. I am spread too thin now and he suffers as a result. He needs patience which I started Wellbutrin for 3 wks ago (couldn't take it during pregnancy/nursing) for, so THANK YOU FOR THAT RECOMMENDATION. I literally was looking up how to tie a noose the days preceeding the med start. He starts a Comprehensive Autism Preschool Program on Monday, freeing me up with the time to diagnose/evaluate his irish twin younger sister. Fingers crossed. Someday I will insist on going out w/ my hubby on a date. I used to be so much fun I think. Praying things will get easier. I have to admit though, my irish triplets are awesome together...yeah they hit/punch/slap eachother/smother from time to time, but they do not give eachother much time to isolate/stim on wheels for too long. Their laughter and giggles immediately crack me up after I've completely lost my shit over the millionth thing that broke, spilled, messed up, thrown, dropped, went missing, spit, hit, screamed, escaped, moaned, fell over. Can't go anywhere with these crazy kids. The looks of sympathy as I push the double stroller w/ 2 screaming kids hitting eachother and a baby strapped to my chest KILLS me. LOL

    ReplyDelete
  85. I have 3 children. All by different fathers. My middle one is on the spectrum. And it didn't even cross my mind that my 3rd would be on the spectrum. My son is high functioning autistic. But the struggles are still there. The older I get, the more I see my traits in him and it helps to understand. I too have a short attention span, ocd and obsess about things. I choose to look at it that my son speaks a different language and I need to learn his language. It's not that he is wrong, just different than what I'm use to. So as I teach him, I learn and open my mind. The other hard thing (which I'm curious about- do other people have this struggle ) is that I married with my third child. And being a blended family is tough.

    ReplyDelete
  86. Hello we have a daughter aged 8 NT and a son aged 6 with ASD he is at a special school and doing really well so both children at full time school - I am 41 and thinking we need another child as really worried we will regret it and it's now or never! Husband is up for it but I worry That he/she will be on the spectrum and I won't be able to cope ! Or that I have twins! Heard it's more common as you get older ?! So in two minds what to do . We have the room and husband is stable ( however I do everything for kids during week he works 7-7pm ) and we have other family for support occasionally ekk I think we just crack on !! Advice please

    ReplyDelete
  87. This comment has been removed by the author.

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...

© 2011-2016 Autism Daddy / Frank Campagna. All Rights Reserved