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Autism Mommies: A question

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in Special Needs

Let's pretend you knew your child would have Autism as soon as he/she was born instead of getting the DX at 18 months or 3 years or 7 years old.

Knowing what you know now, would you have (or even could you have) done anything different? I know we are already ahead of the game since we "know" spectrum behaviors could be in Nate's future and we will get some early intervention, but is there anything else we can do or should be doing right now?

Everyone says to throw out the baby book with all the milestone charts because ACC babies will be behind. I can't stop myself from going over to 0-3 board to see how everyone else's babies are doing. They are all smiling and have been for weeks. Nate is not smiling yet (he's ten weeks) and I really need it.

I am trying really, really, really hard to enjoy my baby, but my mind is getting in the way of my heart. I feel like every spare minute I should be working with Nate or at least researching. But then I feel guilty spending time to research if he is awake and I should be DOING SOMETHING with him. ANYTHING. Besides the regular baby stuff & activities, I just don't know what that is.

I know some of you have a lot bigger issues than mine. I am having trouble figuring out how to help my "special needs" child when I have no clue what his special needs are gonna be.....Thanks if you got this far. I just needed to share my frustration and guilt with someone who understands.

WAY 2 Cool 4 School


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Re: Autism Mommies: A question

  • stillhopingstillhoping

    Ditto Auntie ..

     

    I will add that no I would do nothing different. I knew early on, at six weeks pregnant that my pregnancy was not going to be a "normal" pregnancy, I knew that my babies would be premature, I knew that they may have issues, I refused to do an amnio because it would not have changed anything I was still going to have my babies.

    They were born early and spent some time in the NICU, a month in fact, and compared to what some others have gone through our NICU stay was very easy. But I knew when they were five days old that Douglas had some cyst in his brain, I knew before they were born that they were at high risk for brain bleeds.

    I learned early on NOT to read the what to expect books, as my babies were not going to do anything on time. They were delayed because they were so early. I knew that they would struggle with some things. But I loved them and yes I have to say there were days that I sat and cried, there have been days that I have sat and cried even still because like you I want what is best for them and I want them to have all that this world has to offer. 

    You do have to morn for not having the "perfect" family and come to grips with the family that you have. It is not going to happen over night but it will happen. My reality was so different from that of everyone else. 

    I had a difficult time in my pregnancy, I was on bed rest, I did not get to do the normal pregnant things, I was sad, scared and stressed. But on the other hand I was thrilled to be pregnant. I was so happy to have them and to be their mom but I was scared because they out numbered me and were so tiny. 

    Being a mom of multiples is special and sweet and an awesome experience,  in saying that I have to say that by having multiples I did miss some things. I would have loved to have sat and cuddled them more, to have been able to go to play dates, gymbo, etc and do things one on one with them but that was not my reality. There was always another baby that needed to be feed, or taken care of.

     

    Morn for what you have lost and celebrate what you have gained. Having a special needs child is one of the most awesome things in the world and you have been given the job of a lifetime, the opportunity of a life time, this special little man loves you, adores you and needs you.

    It is okay to get upset from time to time, it is okay to cry, it is okay to be sad, it is very normal in fact. 

    Hang in there and know that you are not alone.. We have all been there. 

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  • Assembly_ReqdAssembly_Reqd member
    image-auntie-:

    I see your baby is an IVF baby. Did the people who got you pg warn you that you would be at an increased risk of PPD? Ditto adoptive mothers? According to my clinical psychologist friend, an adoptive mom herself, these two paths to pg have much higher rates of depression in the early days. maybe it's because the choice was deliberate rather than "oops". Maybe it's because you have additional time to build that fantasy family in your head making it harder to accept the reality of the one you have.

    It's something to be aware of. And if you need support so you can be the best mother to your lil' guy, get the help you need. Many, many of the moms (and dads) on my support forums are "on something". On the smaller more intimate circle of 10 I belong to I am the only mother who isn't taking an SSRI or other psychoactive medication for mood. I have in the past, but don't need to now. FWIW, I have PTSD unrelated to my son. Unfortunately, when it flares I can't be the mother he needs, so I medicate.

    Thanks Auntie. He is not an IVF baby but a pre-IVF surprise. So he is "naturally" missing part of his brain. I realise I am in Holland now and not Italy like we planned. I had a CVS during the pregnancy which gave me a false sense of security that everything was perfect and he had no "chromosomal issues". He doesn't have the chromosomal issues CVS tests for. He has all his chromosomes. One is just rearranged and missing bits.

    Since we had about a year and a half of infertility trying to get pregnant, I was always expecting the other shoe to drop. Since my pregnancy was super easy (read a tiny bit of morning sickness) I joked with my family that I would "be in for it" either at delivery time or else he would be a cranky colicky baby. I can't believe how right my intuiton was. A baby missing part of his brain on top of 18 days of NICU really sucked the big one!

    I already suffer from depression and have been medicated for 20 years. Frankly, I cannot believe what a good mood I have been in considering the circumstances. Besides a couple of crying nights in the hospital PPD has not been an issue. My issue is more of frustration with not knowing how to "help" mitigate any learning or social issues Nate may (or may not!) have. I want to be doing all I can as early as I can.....

    WAY 2 Cool 4 School


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  • Assembly_ReqdAssembly_Reqd member

    I can see how the Holland poem could get a bit cheesy. My sister found it for me when she was researching ACC and told me to read it. It helped me to put things in perspective.

    Those first few days I thought it should have been "Welcome to Afganistan" but now I feel like we are somewhere in between Holland and Italy.....

    WAY 2 Cool 4 School


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  • MandylovesTommyMandylovesTommy member
    I have a 10 year old from my first marriage who is autistic.  I recently got remarried and am now pregnant.  Of course, I have the worry that this baby will have autism as well, but it can't be the focus of all the time spent with the baby.  My doctor really dropped the ball with my son.  He wasn't diagnosed till he was 5, and it should have been caught much sooner.  There were signs which I brought up to my doctor, but I was told it was normal.  So my advice is to find a doctor you really trust.  That doctor needs to be up to date on any signs to watch for with your child.  You can't do it all on your own.  You should definately keep your eyes open for problems, but that can't be your focus.  All babies are different and you are going to drive yourself crazy worrying about every milestorne.  Look into ways to stimulate your child that include bonding time.  If you do feel like something is wrong, and your doctor doesn't seemed worried, it's ok to get a second opinion or see a specialist.  I think that's what I really wish I had done.  No matter what your child will be amazing.  I'm not saying it won't be hard, but the little things seem to mean so much more when you really appreciate them. 
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  • ntyravgmomntyravgmom

    Oh Gosh, yes I would've fought for a specialist sooner. My 6 yr old has an autism spectrum disorder. He wasn't diagnosed until 2 1/2, but I just knew something wasn't right. If I had known the traits of autism along with the normal milestones I would've seen things much earlier, too. I believe my son had it since birth. Right after he was born, he never gave anyone any eye contact, he didn't crawl he went straight to walking, and he didn't speak until we started early intervention at 2 1/2, but even then his language was scripted and learned. He still gets speech at school.

    If you know that their is a risk, shouldn't you still be getting some sort of therapy for him? In our area their are specialists that will see infants and they can give recommendations on what you can do in the meantime before any official diagnosis may be made. Since you don't have that, I would just encourage lots of talking to him, baby massage, age-appropriate play (tummy time,etc.), and encouraging eye contact. Just remember an infant his age can't see far, so you'll want to get really close to his face and even show lots of black & white images, they can see contrast very well at this age.

     

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  • SobachkaSobachka

    You got plenty of great advice: I can just add a personal opinion.My son has ASD and was diagnosed early.

    I do not regret reading all the baby books, because I knew exactly when the milestones were not met. I created a linear regression-based statistical model of his development. It helps me chart his personal progress.

    I do regret not helping him roll over more, not doing the eye contact more. I was in such a daze after I had him (not PPD) that I do not remember the first 10 months of his life very well.

    I did and would again read a lot to him. I did and would again put him on a schedule. I should have had more deviations from the schedule though. When DS was just born, I never took him anywhere (like shopping, parties, etc) for cultural reasons. I should have.

    I also regret not being very loving. When DS was born, I expected to have an instant connection, instant love. I did not get that. I was so disappointed, I was not sure if we would EVER bond. We did, but I wish I was a tad more patient early on!

    Good luck to you. You are a great mom, and your son is lucky to have you.

    PS: I do not like the Holland poem (I lived in Holland, and I prefer it over Italy, where I lived as well). I think my personal poem could be called: I arrived at Abu Graib and was stripped of everything I knew to be a part of my world. But I am apolitical, so I do not want to turn the discussion there.

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