Autism
  • Mommy_22Mommy_22
    Posts: 55Member

    I just found out that my DS3 is autistic. A high-functioning autistic person, but it's definately there. Through the whole diagnosis procedure and the debate and worry before he was diagnosed, I was the 'strong' one. I was the one saying, "It's no big deal, we will get him whatever help he may need. No worries" all with a smile on my face. My husband broke down in tears. My mother is constantly reassuring "me" that my DS is SO smart and so wonderful and there is nothing to be worried about. My sisters just said, "How sad." and "I thought so.". My MIL offered to buy "special" toys from a toy store meant for children with "special" needs. The diagnosis coming around the same time as my husband admitting that he no longer loves me the way he used to. He still loves me, but not in that extreme passionate way that I still love him. We have agreed to "start over" when he gets back from New Mexico in a couple of weeks. In the meantime, I am left alone to deal with all the new appointments to be made, all the applications to be put in to get the help, all the GODDAMN paperwork, all the new doctors, speacialists, counslerors, and everything else. Through it all, I have had a smile, a laugh, a brave game face. IM DONE! Inside, I'm sick. I'm sick with guilt. I'm sick with fear. I'm sick with anger. I'm sick with a sense of never ending fatigue. No one knows how I feel. My husband has some disorders of his own that make me have to be the strong one. I KNOW I don't want to tell my mother, who is the second closest person to me; I would hate her for the pity in her voice. I already "hate" her for continually reassureing "me" every single time I speak to her. I'm so exhausted. Emotionally, physically. I have no money or insurance to go to a doctor myself. I must be strong for both my boys. And my husband. There is literally no one in real life I can talk to for fear I will hate them for their reaction. I worry about my sons future. I worry if he will ever be "normal". I'm terrified he will have a childhood like mine. Never accepted. No true friends. I'm worried that all the things I have dreamed of for my baby will never come true. I'm afraid that I somehow made this happen. After all, I had three beers, two cigarettes, and smoked to bowls of marijuana when I was pregnant with him. I was 17. I no longer smoke ANYTHING.  I was UNABLE to breastfeed him like I am his brother now. I feel like a failure. I feel......brittle. Like the smallest tug or twist is going to break me. I fear what will happen if I can't handle this. I know it really will be ok. I know that my son is smart. I know that he has a bright future ahead of him. And most importantly, I know that I love him just the same as I always have and always will. But, I also know that I need someone to know how I really feel. Even if I don't really know any of you on here, thank you so much for simply listening. Its been a tough couple of months. Its good to know, I'm not really alone. That I have a place to vent. That I have people who won't judge me for being weak. Just writing this has helped so much. Thank you Scary Mommy for being here when no one else could be.

  • momofdbbmomofdbb
    Posts: 10,900Member
    Huge hugs from one mom of an autistic child to another. You are ahead of the game , well at least you got ahead of me. We didn't get a diagnosis untill DS was 10 he is 12 now. It is not your fault. I know the feeling though.
    " Wibbly wobbly timey wimey ......." The Doctor
    " I'm a leafe on the wind..watch how I soar ." Wash :((
    " Oh the wall had it comming.' Sherlock Holmes
    yea I am geek !!
  • Koala82Koala82
    Posts: 392Member
    Big Hugs mama. What @momofdbb said is true don't blame yourself it isn't your fault. Not sure what state you live in but try to find out what programs they have for schooling. In Texas they have PPCD ( Preschool Programs for Children with Disabilities) for children 3-6 where they are able to go to school and get lots of help. After 6 they have LS (Life Skills). These programs have been great for my boys. ALL of my boys!! You are so not alone in this battle and there is plenty of help out there so take advantage of it. My DS5 (youngest) was just diagnosed yesterday with Autism as well. Now I have two boys with Autism.

    >:D<
  • AnonUser28
    Posts: 2,043Guest
    I know how you feel. Exactly. Hugs!
  • PurpleFlowersPurpleFlowers
    Posts: 6,043Member
    Its not your fault. All of your feelings are totally normal for any mom. Big hugs to you. We are all here to listen and help as much as we can. >:D<
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
  • Darlene2
    Posts: 5Member

    ok 1s thing try and calm down hunny its going to be a LONG ride and you need to buckle up for it , hell with the game face , you're his #1 fan and always will be and with that you are also his advocate . if you feel something isn't right SAY IT, QUESTION IT , GET A SECOND OPINION ON IT , ( i write this in caps because noone ever told me how hard it could get as a single mother of a high functioning boy now 4-5 in july ) now breathe .... My son was diagnosed pdd-nos at 3yrs old , from then on he was also dx, odd and adhd as well , on top of that there was no support from anyone other than my boyfriend. it does get easier I promise , once you learn the ropes but please I beg you to NOT let these fools (family friends ect...) that have no idea what it's like walking in your shoes tell you how you should act with your child , or what your child may or may not need and especially discipline your boy... try not to let the dirty looks bother you from strangers and the comments like poor child because i'll tell you this much , my child is as well hf and there is nothing poor about him . he has friends although his speech hasn't always been good or even at one point he said barely anything until he was about 3 .. he now can get dressed on his own (with prompts) brush his own teeth , bathe himself , and ride a bike like all other kids his age ,now wih that being said he is the quirkiest child i have ever met but you have to find the joy in it , look for the things he excels in ( it will come with time and age ) and play off of it . for example : my son loves school and has a great memory , so on our way to school every morning (i drive) I have him give the directions to school . it helps him learn right from left wich he gets confused still but its 8 miles and he can get us there ... he likes it and seems to get a kick out of it as well and really seems to help his day go well ... little things will make and break a day for some kids ....!   things will work out for you I swear ...!

        if you need to talk please feel free to pm me or shoot me a message I'm here to talk if you need an online buddy with some of the same struggles in daily life !  

       also , try not to be hard on yourself , this happends to 1 in 80 children , be thankful he is alive and don;t think of the would have could haves and what if's , that alone will drive you nuts. sounds to me that you were given an autistic child because you would be the best mother for him not because you had a smoke of a bowl .! be easy on yourself hunny , this will be the best adventure you've ever had in your life , as soon as your willing to look at it that way ! its hard but nothing fun or worth doing isn;t hard at somepoint !

  • chaosmomchaosmom
    Posts: 4,186Member
    Hugs momma! You did nothing wrong. <-- keep saying this over & over & over until you believe it. There are plenty of moms on here with special needs kids, so anytime you have a question, don't hesitate to ask us! Right now, it is completely overwhelming. There is lots to do & get set up. But you will get settled & find your groove & run with it. Take time to go hide in the bathroom or bedroom and cry & get mad. Make sure you have an outlet of some type. It will help you keep your sanity! You got this :)
  • pennypenny
    Posts: 1,599Member
    My son was diagnosed last fall ay 4yo. It was difficult to accept at first - I was the one who fell to pieces - and even now I still worry about what his life will be like long-term. But, he was accepted into an amazing program through our school system and it has been the best thing to happen to him! This diagnosis has opened up many doors that were previously closed to us, like your son's will for him. All of us in this boat know what you're going through with regard to your sweet little boy, and we'll happily be your shoulder.
  • Peace
    Posts: 3,230Member
    Oh, wow. No wonder you're exhausted in every way. You have a ton on your plate...
    I wish I had some magic phrase to make you feel better.
    All I have is virtual hugs & an ear. Please know you've found a safe place to vent. >:D<

    And as you see, there's other moms that are well versed in advocating for their special needs
    children. They'll understand & support you every step of the way.
    Most importantly, they'll save you time & energy by sharing their ways of supporting their kids.

    Hugs, momma!
  • rcaprarola
    Posts: 2Member

    I understand how you are feeling. My daughter is PDD-NOS and we have known for about a year and a half. For the first 6 months her father was not able to process it. I felt like I was doing it on my own, defending her diagnosis to friends and family members. Then once I got my "Autism" legs I learned to stand up for my child and myself. I realized I didn't need to justify anything to anyone. I was her mother and I HAD to be her best advocate.

    1. As hard as it is you have to take care of yourself. Find someone you trust to watch the kids even if only for an hour just you can think or not think. You are no good to your children if you burn out.

    2. You now have to live day to day. As hard as it is you have to let go of what you dreamed for your child. It is ok, you will grieve, it is normal to be very upset.

    3. Find some sort of support system. You took the first step by reaching out on here. Even if you only find one other Mom out there who has been in your boat it helps having someone who is a little further on the road of Autism. It is very overwhelming and having a person to vent to helps. Especially if it is someone who knows that like isn't normal. Autism Mama's know that!

    4. Some good resources for info and support can be found through Autism Speaks (they have a newly diagnosis kit "first 100 days") and Autism Mom bloggers (one of my faves Diary of a Mom)

    You are stronger than you realize but remember it is ok to cry, sometimes it helps.

    I will warn you it took me almost a year to really feel confident in what I was doing but you will get there at whatever pace you do but one day you will wake up and know you are doing everything you can to make sure your child will be the best that he can be.

    Our kids are like snowflakes, no two are the same but they are all beautiful and unique.

    You an message me if you want. I am always available to help a mom in need.

     

     

  • Vicky123
    Posts: 5Member
    Omg you sound like me, my youngest was diagnosed @4 and half. I thought he was adhd, so I didn't see autism coming. I had no reaction except hmmmm I guess that makes sense. Inside I was screaming. Friends and family say "He looks so normal!" What do they expect horns or a hump growing off him? Then I got used to it, when he was having a tantrum in the middle of the grocery store and people were giving me the stink eye,I just say he's autistic, they say sorry and walk away loking ashamed! He has wonderful therapists and a para I can never thank enough. This too will get easier....and about the time you think you have it figured out, he will change the rules of the game and you will do it all over again, but it gets easier each time. Allow yourself to get mad, scared and cry, you will need it!
  • Dragonbabyx3Dragonbabyx3
    Posts: 1,467Member

    >:D< I remember these feelings, and they never fully go away. The most important thing to remember is not to blame yourself.  My DS5 is high functioning as well. Getting the diagnosis, then going through all of the doctors appointments and everything else was pure hell. I wont lie. I had no help from his father, who enables much of DS's behavior (he also has severe adhd) The main thing to remember is there is nothing to "fix" He is a special and unique individual. As far as people saying sorry and stuff like that...  it irritates the hell out of me. always has.  There is nothing to be sorry for, he is who he is. I am not sorry that my son is autistic, that he thinks and acts a bit differently than other kids, so why should someone else be?  A lot of people don't understand that it is not just the child that has to go through the appointments, and arguements and frustration in the doctors offices, schools, and every day life, but the parents (more the primary caregiver) as well.  It took forever to get my son into the 504 program at school. He had been kicked off the bus around 6 times by November. (In his defense he had a bitch of a bus driver!) It's a tough road, and if you need someone to talk to, by all means,  call me.  I will pm you my phone number, and you can text/call if you need someone.  Stay strong mama, I know it's tough!
  • WabiSabiLife
    Posts: 131Member

    Everyone here has given you great advice, better really than I can give, as my words are really second hand. My DH has a masters in special ed and works at an 'out of district" school; most of the kids at his school are dual diagnosis, with autism being the main diagnosis. His kids are unable to be serviced by inclusion in their own schools. He always says the two biggest things are to get early intervention, and get things in a child's IEP (Individual Education Plan). An IEP is a legal document stating what can and can not be done with/for your child in regards to their education and their care while under someone else's (not your) supervision.

    Good luck with everything!!

  • KateGirl
    Posts: 9Mmember
    Hugs. Stay strong..my prayers go out to you.
  • GingersnapGingersnap
    Posts: 9,696Member
    Both of my boys are on the spectrum. It took me awhile to find a new normal after my eldest's diagnosis, but I did. Everything you are feeling is "normal". Come on here and kick and scream and panick and BE VULNERABLE. You don't have to be strong for us.

    Sometimes, I just breathe deep, love my kids, and rest.

    One thing I wish I'd known:
    I have a case manager that helps me advocate for my son. I didn't get one right away because I thought the "case manager" at his special preschool was his case manager. No. That was just the person managing his services at the school. Not nearly as helpful or comprehensive as an actual case manager. I really wish I had gotten a case manager right away. Ours really knows the ropes and gives us great advice.
    image
    “The privilege of a lifetime is being who you are.” ― Joseph Campbell
  • GingersnapGingersnap
    Posts: 9,696Member
    Also, regarding you making your kid Autistic with a little nicotine/alcohol/pot:

    bullshit.

    I didn't smoke, drink alcohol *or* caffeine while pregnant with either of my kids. I took the right vitamins and made every prenatal appointment plus a few extras. I did not fail my kids.
    image
    “The privilege of a lifetime is being who you are.” ― Joseph Campbell