Need Help with Ditching the Guilt

It's a biological glitch...it happened just because. There is nothing you could or could not have done to prevent this.

Hi P.,

My 18 year old son has Asperger's Syndrome also. He wasn't diagnosed correctly until he was a tween. I have walked in your shoes. Asperger's is a high functioning form of Autism. In fact they are talking about doing away with the Asperger's diagnosis and lumping it in Autism because it's on the spectrum. From one mom to another you are blessed by having him just the way he is. I fought feelings of guilt when we first found out also. I played the What If game to no good. Questioning yourself is good only to the point that you are sure you covered all the bases...but as you well know it's easy to blame yourself. You are not at fault. They still don't know why ASD occurs.

One tip that helped my husband and I the most was visualizing three baskets. Baskets A, B and C. In basket A you "put" all things that are worth a meltdown. Only the most important things go here...like things that could harm him as an example. Basket C you "put" all things that are OK and safe for your child to do. Basket B is the basket you place things that could go either way and must be based on circumstances at that moment. Your goal is to have an almost empty A basket. This basket idea worked so well for us and reduced the number of meltdowns that he had.

Another tip is to start a 3-ring binder on your son. Get one that has a clear pocket on the front...you'll place a picture of your son there. In the binder is all school, medical and behavioral health records. You take this binder to all appointments. You'd be surprised at how many times I had paperwork at hand when the professional didn't. By having the notebook you show you are prepared and mean business. The picture is a reminder that it's an actual child you are dealing with not a number or case.

I'd be happy to answer specific questions. I'm currently writing a book on our journey and it's my passion to assist those newly diagnosed. I can remember the blinded deer in the headlights look I had when we heard the words Asperger's Syndrome for the first time in conjunction with my son.

One more thing. This can be emotional draining on you and your husband. It's key to your marriage to act as a team. There were many times things got so rough it could have ruined our marriage but we turned towards each other instead of letting the stress divide us. Teamwork is key.

W.

Children don't develop autism, they are born with it. Your parenting doesn't cause it, it is a neurological disorder. You might want to see if there is a local group for parents of children on the autistic spectrum, to offer you support and information.

If you're having trouble letting go of the guilt, remind yourself of this: feeling guilty over what you might or might not have done when your son was younger is draining you of mental and emotional energy that you can use to support him *now*. So you're letting go of the guilt for *his* benefit, not just your own. And it's *great* that you're getting support for him now in preschool, he's still quite young and the support he's getting now will be a great help.

I have 9YO twin DD's, one is an aspie (we were tipped off by her preschool teachers) and as I've learned more about Aspergers, I'm pretty sure that I'm also an aspie and one of my brothers probably is, also. Having grown up feeling like I didn't quite fit in but not knowing that it was largely because of my brain wiring meant that I usually concluded that I just wasn't as good at social stuff as other people were and/or that there was something wrong with me and that's why it was so hard for me to feel accepted. For my DD, I can tell her that her brain wiring is different from her NT twin and while that will make some things more difficult for her, it also has given her skills that will serve her well throughout life - she has an amazingly creative imagination and an encyclopedic memory of things she's interested in.

I'm convinced that a large portion of our science and technology advances and the successful operation of complex medical, electronic, and mechanical systems are due in no small part to people on the autism spectrum whose ability to be almost obsessively focused on a narrow field of interest is a huge asset when it comes to making sure that some little detail is exactly the way it has to be. Check out this article about programs that train people on the spectrum to do jobs like software testing: http://www.msnbc.msn.com/id/34047713/ns/health-mental_hea...

Stop picking on yourself. There are enough people in this world to do that for you. I feel for children because I worry that society is often placing a label on a child that is just a little slow in the social department. I was shy in preschool. It is more often than not normal at that age. I have worked as a psychiatric nurse for almost twenty years. Too often children are mis-diagnosed. Not all of us come out of the womb singing and dancing and giving award speechs. It is hard for a child to be a little shy these days without someone wating to slap the label autism on him. I am not saying that your child is not correctly diagnosed, just that I knew more shy kids in preschool than outgoing ones. And most all turned out totally fine.

P.,

I just want to say that there is NOTHING you have done or could have done to prevent or cause your son's diagnosis. You sound like an awesome mom and the good thing is that you have gotten him the help he needs early on. He will be just fine!!!! You need to stop beating yourself up about this.When you feel sad or guilty, repeat this mantra : I am the best mother I can be to _______. It is NOT my fault or his that he has different learning abilities. I can support him best by being a positive, loving mom to him and loving him just as he is. I can love myself best by accepting that I am the best mom for him and I know in my heart what to do and am doing a fantastic job at teaching him!

That is what i would do--- your doing fine-everyone has to adjust to something new in the family dynamics. It will settle down after a little while. Hang in there!

M

First I would like to reassure you that you did not in any way contribute to this. Second, KUDOS to you for getting your child help, and with this help he is going to be fine!!! The reason why I say Kudos to you is because I own a preschool and have had to had these conversations with parents and it is not always well received. And in some cases they will not get the help their child desperately needs. Why, because they cannot accept that their child needs help, and for their own selfish reasons are not willing to put those feelings aside and help their child when it is so crucial. When they are young and before they enter school. Also, KUDOS to your son's teachers for picking up on this, also a touchy situation because it is not always received by parents, and some directors choose not to say anything for fear that the parents will be mad and take their child out of the school, VERY SAD!!! I have a child at my center who clearly has some issues, the sweetest child you would ever met, been with me over a year and a half, I am in no way qualified to diagnose him but I have my suspicions. I have spoken to the parents at least 3 times, finally after the third conversation they have had two evaluations. The reports on one clearly recommend further testing, and suggest this child work with an OT. I guess they didn't like that so they went somewhere else, I didn't see that report but they told me they were told that he is a perfectly normal little boy. He is normal, he just needs help!!!! I know the mom suspects, I can see the tears in her eyes when we have talked about it, but dad will not have it!! Mom will send me e-mails asking if we see any improvement etc. My hands are tied, without coming out and saying ARE YOU KIDDING ME!!! PLEASE HELP HIM!! I have therapists who come to my center to help other children enrolled and always point him out to me and say "Have you talked to the parents about this child" Clearly because it is that obvious. I am not permitted to discuss things with these therapist, but inside I want to say to them what are you thinking?? I have given them literature, been really positive with them to explain that if we help him now by school age he will improve greatly. I had them speak with my kindergarten teacher who has a degree in special education. This child is going to be 4 and they are missing all of the opportunities to help him to succeed, so PLEASE do not EVER feel GUILTY!!!! You are an amazing mom for giving your child every opportunity for the bright and wonderful future he deserves, and trust me he will have it!!! Without this help your child would struggle in a school environment and now you have helped him in every way available to him. I am a stubborn woman and for the sake of this child, I am not giving up on him. I have a 2 more years before this child enters kindergarten. I just don't want them to take him out, so I am trying to move slowly, and choose my words carefully, not easy!! Again, you did not do this, I know it is hard, but you are accepting it, and when you do move on . Your son is going to be fine, thanks to you and the wonderful school that picked up on this!!! Best of luck to you.

It's nothing you've done. But now learn everything you can about raising a child with autism.

To be honest what your feeling is pretty normal, not that you should beat yourself up though. You will go through many emotions in the beginning. You did nothing to cause this. One day at a time! You will eventually get to a point where your educated and confident. Don't get me wrong you will have days where you are still questioning things you will have to make choices on down the road but you will get there! The best advice I can give is to reach out to other families (when you are ready) Each childs road to life and success is different. You will be able to get the support you need and great people to bouce different stages and decisions off of. I am assuming your County has stepped in and he will receive Early Intervention services through them in an IFSP? They can come to your home, give you both support or just visit the daycare. They can also give you contacts. I am thrilled he is making so much progress! Your a great Mom! Your getting him the help he needs no matter who saw the 1st signs. I wish him all the success in the world! Take care.

I have not but I have friends who have.
Think of it this way...if it was that easy to identify a cause, do you think there would be autism in the world today?
What you're asking yourself is *normal* for parents of kids on the spectrum. We all want answers, reason, and specifics. But that's not going to be the case for autism.
The important thing is that is has been identified (that Dx may change as he gets older--or might stay the same--but it's a starting point) and now he can get the help & services he needs to thrive.
Best advice? Find yourself a mentor. Someone in the same "boat" who can guide you in how to be an advocate for your child.
Best wishes!

Hi P.,
If you need any help with anything, I am a behavioral consultant and can help you. I have worked with several children that are in the spectrum over the past 15 years. Feel free to contact me ____@____.com or ###-###-####.

Sincerely,
K. Estell