This is the first question everyone always seems to ask, and the reason for the question is quite simple, your suspicions have been confirmed and you are now very overwhelmed and scared. I will tell you from experience that although there is a feeling of successes because what you had suspected has been proven to be true, that success also comes with a feeling of confusion. Why would you feel confused you ask. Well simply put you just don’t know what to do next. At this point well meaning people aware going to give you advise and it is going to be drastically different depending on who you ask. My advise at this point is to catch your breath and relax a second because this is going to be a bumpy ride.
Getting advise from people who do not have an ASD child at this point is going to be pretty much pointless for the simple fact that they have not navigated the system and basically have no clue. These people are often well meaning but their lives are never going to be like yours and they will never fully understand what you are going through. The other thing is that they do not know your child as well as you do so they do not know what is best anyway. Think of it this way, you went to a professional to get here so why would you now just let anyone guide you now, and the answer is you wouldn’t, so that just tells you that you shouldn’t.
Just as Yoda says “full of emotions you are” and this statement is so very true. In essence you are now on a path that you never intended to be on, so you feel scared and confused, not to mention you are also worked about among a big mistake. I will tell you that you are going to make mistakes so get used to it and prepare yourself to just take it as it is Ns move on. At this point my advise always is to find some acceptance because there are a few things you need to come to terms with and if you don’t you are doing yourself and your child a huge disservice. Number one you now have to accept that your life has changed and what you thought it wS going to be like is out the window. Your normal is going to be different then everyone else’s normal and anyone who tells you different is sadly mistaken. Second the life you thought your child was going to have has also changed they in all probability is changed as well. The is especially true of a child who is more severely affected. If you have a severe child just know they are most likely never going to be married or have children of their own, and they are also going to need care this entire life. In a lot of cases they are going to need to be living with you or a group home there whole life as well. On top of all of this their care is going to cost a lot of money that is not all going to be paid for by your state or insurance. It is going to be paid for by you and you alone. Wow just scared you didn’t I ? I did not mean to scare you I am just telling you the honest truth.
No one is going to do anything for you, you are going to have to do things on your own so get used to it. The state agencies we not going to find you and call you up and say hey we know you have an ASD child how can we help. Even she you contact an agency they are also not going to just offer you everything they have either. I know what a suspense that is, they are not going to offer to just give you money and services that is going to cost them a lot of money. Also the school systems are not your friends either because they have budgets and your child is going to break it so they are only going to do what they have to or what your force them to do, another surprise huh. This is also a point where your family and friend are going to show those true colors. What do i mean by that you ask, well what I mean is that they have not been through this and once they see the time and effort this is going to take they back away because they do not want to spend their time and effort helping you, they have their own lives to live. Trust me I am not just being negative here I am speaking the truth and as we all know the truth can be hard to hear.
So what should I do know you ask, and this depends on how old your child is. If your child is under three years old the. You want to get early steps or early intervention involved. The agencies name may be different depending on your state. In just about every state they provide services for children up to three years old and the. After that the school district takes over. These agencies ca provide services such as speech, OT, PT and ABA services for your child. For those who do not know what those terms mean, they are occupational therapy, physical therapy, and applied behavioral analysis. These are the services along with speech therapy your child is going to need to be able to get closer to a normal life. You are now asking why does the school district take over after three my child is not in school, and the answer to that is because that is the law. The state is responsible fromGe three to age twenty two. You are now asking why twenty two, and the answer to that is because if you have a severely affected child they are going to need care past seventeen so again this is the law. I will get into specifics on things in later posts so do not worry about this things now, you have a lot on your plate as it is.
Next thing to do is seek OT sate agencies for the disabled. In my state the agency is called DDS or the department of disability services. These agencies will have you apply for services, and once approved they will assign a case worker to you who can guide you thought the process of what services you are going to need and who by law has to provide them. In most cases it is the schools districts responsibility to provide services and that is not just for in school hours it is also after school and if need be residential schooling for your child. This is a post for another day but the district is not going to offer you expensive services, they are going to tell you they have a budget and they are not responsible. That is a lie and they will try to get out of whatever they can.
Next thing to do is apply for SSI which is a federal not a state program for disabilities. Most of you know what this agency is but are thinking that is not for children it is for elderly or physically disabled people. Well you would be wrong in thinking this, your child is also disabled so they qualify for services in most cases. I will get into how you go about doing this in a later post but do not let people talk you out of this. People are going to tell you that you need a lawyer and you make to much money and you will never get it so don’t waste your time. Remember how I said others not in this situation do not understand and don’t listen to them, well this is exactly what I was talking about. First off SSI is federal and has nothing to do with the state, second they do consider how much money you make but you will still qualify for a low level amount and still get the label of disabled for your child, which will in turn get you services. Lastly once you get approved for SSI you can then apply for state Medicaid because you now have the label of disabled. Now will you need a lawyer, in most cases no you will not because it is a child, now if this is an adult your most likely would but if you have a child with a diagnosis and documentation it is relatively easy to get in most cases.
At this point I want to tell you that documentation is everything and your are going to need it to apply for any one of services from the school system to SSI to Medicaid. Everything depends on this because it is almost like being in court, you have to prove your case. Again no one is just going to hand you money or services, if they did it would be great but let’s be honest nothing in this world is free and you should know that by now. Ok so what is this documentation I am talking about, well simple put it is paperwork. You are going to need proof that you number one have an ASD diagnosis from a doctor, and number two an evaluation that proved the diagnosis as well. You are asking why if I have a diagnosis do I need an evaluation to, and simply put it just proves your case better. I would also recommend getting the medical diagnosis from multiple doctors like specialists. You are again asking why, and the answer is the same as above more documentation proves your case. So what specialists am I talking about? That would be a neurologist and a psychiatrist. These doctors are not just good to prove your case but also to prescribe meds if you need them, and that is also you guessed it a post for another day. You are now saying this guy keeps telling me this, I want answers now, and my response is this is a long and complicated journey with tons of information so I could not possibly put it all n one post, it is literally a book. Hey that is an idea maybe I should write a book! So let’s get back on track here, again documentation is everything and little documentation is going to make things tougher so you might as well give yourself the best shot at getting what you need. Let me tell you there are ok shortcuts here and if there were it would not be worth taking them, trust me you would not be happy with the results.
I know this has been long but there is so much to tell. My final piece of advise here is be patient. This is very important because you are going to be on waiting lists for appointments with doctors, therapists, evaluations, and services. There again is no short cut or way around it so buck up and get used to it. I can tell you the school is going to make you wait and do their own evaluations and then they are going to have meeting to discuss things and they are going to request things of you so as much as this is a stall tactic most times it is something that is going to happen so get used to it. Don’t I tell you documentation is everything well that is a prime example, before wasting your time and patients have it ahead of time to save yourself a lot of grief. You are on a long journey and you are your child’s best advocate, your hard work and time is going to give you child the best chance in life so stop thinking of yourself and think of them, they need you more the ever.
dualspectrumdad 