Whats with autism dads

Being a parent of an autistic child is tough but being an autism dad is a little different than being an autism mom. If you were to read posts from autism blogs and advise forums you will find that there are not a lot of dads to be heard from. I know I am going to get blasted but come on guys it is the truth, most of the questions and comments come from moms. Why is it that moms are the most vocal, and why is it that dads do not seem to be as involved in the lives of their ASD children, that is the question?

Far be it from me to stir up trouble however that is exactly what I am going to do. Let’s just discuss the fact that moms are always more involved with children than dads are, but why exactly is that. Dads tend to be the ones to go out and work and take care of the more physical aspects of parenting such as sports, but the brunt of things are always handled by moms. We all know it is just in the genetics that moms have a more emotional connection to their children, and they also have a more overall caring nature. Now there are always exceptions to the rules but in general this is the way it is and the way it always will be when it comes to parenting. Dads are in most cases content to let the moms handle most things because they would rather be out working and for the most part believe that moms are better at handling the children so they just let them do it. I am not saying that woman cannot or do not go out and work for a living as well but even if they do they are still more involved in nurturing the children, and anyone who disagrees with that is not being honest with themselves.

When it comes to autism, dads seem to be even less involved in their children’s lives for some reason, but why exactly is that? First off I am not making excuses for anyone here including myself but there are reasons why dads are less involved. If you are a parent of an autistic child and have been for a while then you have already been at the first step of acceptance, and that is by no means easy. As I have written before, you have to come to terms with the fact that your life, and your child’s life is not going to be the same as all your friends and families with NT children, and it never will be. That being said women tend to handle this situation far better than men. I know a lot of autism dads and most of them will readily admit their wife does more than them. Guys just have a real hard time handling the fact that their child is different, let alone if it is a son who is not going to be able to do what they have done in their lives. Even when it is a daughter it is hard for a guy to accept that their little girl is not going to get married or is not going to have children of their own. Now do moms feel the same way, and the answer to that is yes, however women do not let that get in the way of what their children need in the present. Women may take it hard behind closed doors or when they are alone but they are not going to let it show when something needs to be done.

The main issue with guys is that they tend to hold their feeling back and not express them, and if you add the pressure of an autistic child it makes things far worse. This my friends on its own is a relationship and marriage killer when it comes to everyday issues all couples have, but in the case of autism it is a thousand times worse. So the question is why is it worse with autism than in a normal family situation? Well simply put it is because there is so much more involved when it comes to autism and the amount of pressure parents are under. The fact is that it is always a fight to get what you need for your ASD child, because no one offers or gives you anything very easily. What this really means is that if the dad is not going to help the mom out with the extra work then the mom gets overwhelmed and that is totally understandable. We all know a women is going to put up with this only so long before they start to feel like they are the only one doing anything to help the child, and as any other momma bear they are going to start to bring out the claws and fight for their young. On top of all of this the mom is going to start to talk about things to their friends and then my man you are in a world of hurt. Now not only do you have your partner mad and upset with you, but then you have her friends and family feeling the same way.

The other issue at hand is that guys tend to shut down and back away when things get tough in a relationship. As a guy this amazes me sometimes because if this were a fight or something at work, or almost anything else we would fight back and fix the problem. When it comes to emotional issues we as guys tend to keep everything in because we are the tough warriors who have no weakness in our armor. We cannot show weakness to anyone because we are men right, this is just not done. This guys is a huge mistake and again a relationship killer. I will admit I am guilty as changed when it comes to these things because I am the same way sometimes. I have learned though that I have to step up and I have to do what I need to because my children need me and I need to give them my best, so they can be the best they can be, and anything less is being disrespectful and unfair to my children.

The point of this post was to give some perspective, I am not trying to make excuses for guys, and I am just trying to state the facts as I see them. I also am trying to let the great autism moms out there know what we guys are thinking. It is my hope that in reading this everyone will open up and have a conversation with their partner and get some feelings out in the open. I am also hoping some guys out there are going to open up and step to the plate, not for them, but for their children.

 

 

 

 

 

What do you do after the ASD diagnosis

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.

How to deal with the holidays

 Having two children on the spectrum can be tough when it comes to holidays, and every time you think you have prepared yourself for everything you get proven wrong. Obviously the key to make things go as smooth as possible is to plan ahead. One would think that having a nine and eight year old would be pretty straight forward when it comes to a holiday but when it comes to autistic kids you would be wrong. I can tell you first hand it is tough and stressful to say the least. If you add to the mix that one child is in residential treatment it really gets complicated.

The first choice you have to make is if you are staying home, or are you going to go to a friend or relatives house. For most people this might sound simple but believe me it isn’t. What you have to remember here is that autistic children thrive on routine and do not like disruption, nor do they tolerate it well. Just think about that for a second because that is the gist of the problem. Going to someone else’s house is going to take the child right out of their comfort zone, and that is where the trouble begins. Those of you with HFA children, and for those who do not know the term that is high functioning autistic, you might just think well I will explain the situation ahead of time and keep reminding the child and that should do the trick. Guess what, just as a person with NT children does not know what it is like to deal with an HFA child, the same can be said for a person with an HFA child and them not knowing what it is like to have a severely autistic child. A severely autistic child is far less tolerant and oftentimes does not have the comprehension or communication skills for you to prepare them or explain things to them. On top of that try having two children and having them be one of each, that is just plain outright confusion. The other problem here is that the friend or relative wants you to be there and thinks everything is going to be ok and that everyone is going to have a good time. While I applaud them for there invite and the fact that they are going to bring a hurricane into their home sometimes you are just better off staying home and celebrating at home, just so you can control the chaos.

Here is the deal with these situations that people need to understand. We as parents of ASD children get stressed, tired, and outright exhausted because we are on duty 24/7 and we cannot rest knowing our children are acting out, feeling uncomfortable or scared. When you have a severely autistic child you literally cannot turn your head or walk out of the room sometimes because the child is going to do something you do not want them to, like take off their cloths and smear poop around the room, or pick up a marker your other child was not careful with and draw on you flat screen or rug. There can also be the pulling pictures off the wall, pulling the DVD player down or throwing the floor lamp. Oh you thought your children were done doing that at three, guess again not an autistic child they can do these things into their teens. Are we getting the picture here as to why we would want to just stay home?

So we have now decided to brave the world of travel and visitation, should be pretty easy right just set a time to leave and get ready and go. Sounds like a nice and easy but truth be told that is a fairy tail. First you need to pack for what one would normally consider a weekend trip because you are going to need multiple changes in cloths, a bunch of the favorite toys, and all the foods that your children will actually eat. That’s right the children are not going to eat what was cooked at the place you are going they only want their food, and they are not going to play with the few toys available they have to have their own. Don’t forget the DVDs and snacks for the road trip because they are not going to sit and be patient on the drive you have to entertain them. Now by the time you get to your destination the vehicle and the children are both going to be a mess so you will have to change them and do a quick cleaning before going inside. Plan on making about four trips back and fourth to the vehicle to bring in all the stuff you brought because you are not just walking in that easy.

Now we are in the house so we can just set the children up, grab a beer and just watch the game with the other guys or sit to talk with the ladies right, oh no you would be dead wrong, you are on duty remember. At this point one of the children is already wreaking havoc or is crying because they do not want to be there, because this is different from their routine. Maybe they are grabbing at things around the house because this house is not autistic proof like home, so you are running around keeping them from breaking anything. The children could be chasing the animals of the house around or even better grabbing at things on the hot stove, hey how is that beer tasting, and how does it feel to sit back and relax, yeah right. All the while you know the clock is ticking and a meltdown or tantrum could be on its way at anytime. Now doesn’t this sound like a fun and relaxing holiday to you. Now I understand there are two parents here but both of you are stressed so even if you are not directly taking care of the children you are so amped up you cannot relax so you might as well help out and do something.

Oh look at the time it is a few hours later and the children are climbing the walls it is time to leave. At this point the best thing to do is to have one person get the children ready and the other pack the vehicle so you can just bring the children out and leave like a bat out of hell. It is time for our quick goodbyes and to get back on the road before the meltdowns start. Once back home it is one parent taking the children in and the other unloading and cleaning the vehicle. You do realize the children are a mess and have to be showered so that is a routine all on is own let me tell you. Now you have to clean the house because you were in such a rush to leave you thought to yourself I will do it when we get back. Now you have to pay the uppercase because the children are all amped up and not anyway near tired so they are already running around getting into things.

After a little time has gone by they will eventually tire and go to bed, at this point you are spent and you say to yourself, I could have worked a double and not be this beat. Well you made it through another holiday you should be wide awake and ready to go to work the next morning and happy your holiday was so great. Oh sorry was that to sarcastic for you, welcome to the world of autism.

 

How do I get an autism diagnosis

People often wonder how do I get an autism diagnosis, what does that actually mean, and do I actually need one for my child? Fist off I am going to answer the question on do I actually need a diagnosis and the answer to that is and astounding yes. Did you hear that I said yes you do need one and I am going to tell you why? The diagnosis is the first step in getting your child the services that they need to better their lives. You will notice I did not say my life, because this is not about me it is about the children and their quality of life. You are going to see this theme throughout my posts and I am going to annoy you with that statement frequently so you might as well get used to it.

People often say well I do not want to label my child and have them live with the stigmatism that something is wrong with them. Well guess what the stigmatism is far less harmful then not getting those services and if you do not believe it you need to reassess your situation. I can tell you that in every state of this great country the state itself and the school districts are going to base the services you get on the label of autism spectrum disorder so if you do not have it you will get very little if anything from them. Are you getting how important this is now? You have to come to the realization that your life has changed and it is not going to be like your families or friends lives anymore, but I will get into that in a later post.

What does it mean to have an autism diagnosis? Well simply put it means that your child in fact does have autism and they are going to need treatments, therapies, meds, and special schooling or any and all of the above.  It also means you are in for a ride and a half and things are not going to be easy for you. The fact is that you have to be your child’s advocate and get them everything they need. I can promise you no one is going to offer you anything or tell you where to go and when to be there, you are on your own. I know that is a harsh statement and there are some nice people out there that will offer to help you along the way but they are few and far between. I am always prepared for battle and if someone offers help I just accept the help they are generously offering thank them with all my heart and suit up for the next fight. The other thing I want to mention is that autism cannot be cured so do not waste time and energy thinking it can be. Again that is a post for another day I just wanted to get the point across that this is a medical condition your child is not going to grow out of or be cured. That being said with treatment and a whole lot of work your child can gain coping skills and abilities you may not have thought possible at first but they are just ways of dealing with the disorder not a cure.

Ok now that I bored you with all of that lets get to the main point of this post and that is to answer how to get a diagnosis. The answer to this question is the same no matter how old the child is when you decide to get the confirmation your child has autism. One other thing you are going to notice in reading my posts is that I am never going to refer to the children as kids, they are always going to be children, I want to make sure they get the respect they deserve and the word child does that better then kid.  Most of you are going to have a feeling something is wrong with your child early on, so you are going to start questioning their ability and the fact that they are not making benchmarks you would expect at a certain age. Please go with your feelings as a parent here, you are going to need those skills often it will serve you well almost every day. Do not let anyone else tell you different or override your feelings here you know your child best go with your gut. Others may mean well but as you will find out they have NT children or Nuero Typical as we in the autism community like to call them, and they literally have no clue what you are now or what you will be dealing with.

So you suspect something is wrong because your child seemed to be developing normally and now things have changed. Maybe they started to speak and they don’t anymore, or they had great eye contact with you but they don’t anymore. Maybe they started rocking in place and spinning objects and watching flashing lights and cringe at load noises, and they never did this before. These are all signs of autism and should be taken seriously. If the child is you an under three years old you want to contact early steps, or early intervention, they go by different names depending on the state. These organizations

Have a group of specialists that know the early signs of autism and can get you started. They are going to tell you that they cannot diagnose the child, and this is true, the doctor has to do this but they are usually very skilled and know what they are seeing. In some states they will come to you and in others you have to go to them but either way get in contact with them and get the evaluation done. They will explain the situation and tell you what to expect and to be honest it is going to scare the hell out of you if you have a more severely effected child, but they are going to be honest, and tell you the truth. From here they are going to tell you to contact your pediatrician and make an appointment to talk about autism. Early steps is also going to be able to provide therapies and services for your child until they reach three years old, and after that it is your school district who takes over, and yet again that is a post for another day. I am sure you are seeing a trend with that statement but truth be told there is some much to deal with in the world of autism I am going to be able to write new content for a long time.

Now we are at the doctor’s office, and we are thinking what do I say and what to I ask the doctor? First off take a breath here, I know you are going to be nervous but just take it easy and get your composer it will make things easier.  You are also thinking does this doctor even know anything about autism or do they even care about it, should I be seeing a specialist or something? This is a tough question to answer but in general all pediatricians care about children or they would not choose to be in that specialized field of study.  I always recommend starting at the pediatrician and then move on to a specialist on top of that; wait what do you think I am going to say here, yes that is a post for another day. The pediatrician is going to ask you a bunch of questions and they are going to have you describe the situation you are in and how the child is acting, or at least a good pediatrician will anyway. They may tell you right out that they believe your child has autism, or they may tell you they want to confer with their colleagues, which is also an ok thing because that means they suspect it but they also care enough to tell you the right thing. If they are not a good doctor they are just going to say not there is nothing wrong they are just a little behind. Remember I said go with your gut earlier, this is one of those times. If you really believe it is more than being a little behind push the subject and if they keep telling you the same things move on to another doctor because this one is not going to help you.

From here if things are as you suspect the doctor is going to give you a written and formal diagnosis. At thing point I would also ask them to write you a letter stating the fact that your child has autism because you are going to need it in the future. You just want them to write that the child came in and that you were referred to them by early steps and that they have determined that the child has autism. They can write this a little more eloquently but you get the gist of it. If you want you can wait on the letter but definitely do not leave without the diagnosis. See way that so hard, trust me it sounds a lot more simple than I stated here because there are all kinds of emotions and worries that go along with this but at least you have completed the first step in the journey.