It’s important to realize that you cannot cope with this new element of your life alone. And you shouldn’t try. There is help out there for you, for your child, and for your family, and you should take advantage of it. In addition to uncovering the services and agencies that offer assistance, you want to find and keep the friends and professionals who will sustain you. And conversely, you may need to minimize your exposure to the people, feelings, and obstacles that drag you down.
First and foremost, your best allies are other parents who have a child on the spectrum. You can find existing parent networks through local support groups, parent clubs, assistance agencies, and online forums like Yahoo Groups. Joining those groups is a great way to get started. To find out if there is a Yahoo Group for parents of children with autism in your area, go to the Yahoo Groups home page and search using keywords that describe your locality along with the terms autism or ASD.
You will also need to build a more personal network. You shouldn’t try to learn everything by yourself; that would waste valuable time. Other people already know what you need to know. They know where to find the best speech therapists, which local preschools welcome special needs kids and have the most caring teachers, and how to get the best results with your caseworker. When you connect with local parents who can share that kind of information, chances are that you’ll find they become a safety net of emotional support as well.
Putting Your Best Foot Forward
Developing your own network may mean overcoming a sense of personal shyness, which can be difficult. If you are reserved about making contact with people you don’t know or feel reticent about impinging on other people’s privacy, the first stage of building a network can be the hardest part. You have to reach out more than you might otherwise, asking sometimes-personal questions, talking to people sitting beside you in waiting rooms, and cold-calling references. If that falls outside your usual personality style, steel yourself to do it for your child. If you are more comfortable communicating in writing, you can use email as often as possible, but there is no substitute for the kind of parent-to-parent conversations that often reveal more than you’ll learn through correspondence or official channels.
Some of your best contacts can be the people sitting in waiting rooms with you. You already have something in common with them, and you know something about each other if you are reading outdated magazines together. Try to strike up a conversation and compare notes on the provider or clinic you are there to visit. You can get a feeling for the other person’s opinions: Are they compatible with yours? Have they noticed things that you missed? Do you admire their apparent confidence; their ability to seem relaxed? This could be a sign that they have been getting services for their child longer than you have. They may have good information to share, so put aside that aging copy of People magazine and trade stories. Are they as new to their diagnosis as you are to yours? Then they will understand what you are going through better than anyone else on the planet. Don’t unload all your emotions, but make a connection. Try to keep your tears in check and remind yourself that their pain may be as fresh as yours. You can help each other most if you use your time to talk rather than weep.
I have friends that I met sitting in waiting rooms during the first weeks following my son’s diagnosis. When we looked at each other back then, our eyes told our whole story. We were all sick at heart and desperately trying to make sense of the news and figure out what to do. And it is amazing how strong we look to each other now. When we run into each other or find time for a coffee date, we see entirely different people looking back. Even as we are share news about the latest round of problems in our lives, the difference is amazing. We are in control and things are moving forward every day. We see battle-scarred but victorious soldiers in each other. These are valuable friends indeed.
Building a strong personal network of smart and experienced parents means taking good care of the network over time. You need to keep your eye on being a friend as well as using your friends. You’ll find that no one is as sympathetic to the problems of your world as another parent who has been there. But you cannot forget to listen, too. And when you discover a great therapist or a wonderful babysitter, share the wealth!
And again, as raw as your pain may be, try to keep it in check when you meet new people. All too often, it is clear which parents are collecting themselves and trying to move forward and which are so overcome with grief that they are not ready to participate. The kind of parents you most want to know will be reading signals and gravitating towards others who will be the most positive contacts for them. Try as best you can to be one of the ones who can offer help as well as accept it. Put your brave face on and save personal meltdowns for close friends and family.
The Art of Self-Protection
Your child’s diagnosis may change your relationship with your existing friends, and it is something you cannot prepare for or prevent. Anyone who has been through a difficult time will tell you that they discovered who their friends were and just how much they could be counted on. This situation is no different. Some people are uncomfortable around bad news and “don’t know what to say.” Others want to take the easy road in life and prefer to spend their time with peers whose kids are easier playmates. These are people you can let go of easily.
There are also those who can be unintentionally insensitive to what you are going through. They may mean well, but they do not understand the depth of your pain. These are friendships you may need to put on hold and reexamine when you feel stronger. If it is too painful to be around a friend who constantly gripes about how little Jimmy won’t pick up his toys or eat his vegetables (at a time when you are wishing your little one would just call you Mommy) don’t put yourself through it. Friends who invariably cause pain can drag you down. Protect yourself and place friendships on hold if they are hurting your mental health. Your own peace of mind is important during this time. Your family needs you, and they need you at your strongest. You can and should avoid putting yourself in situations that erode your confidence or your ability to carry on. Later, when you are ready, you can reopen those doors or not, as you prefer.
Sometime during the first year after my son’s diagnosis I took stock and realized that there were two kinds of conversations going on all too frequently. They were weighing me down like rocks. With some friends I was able to redirect to new topics, but I also needed to prune my network to avoid people who could not stop repeating the same fruitless conversations over and over.
The first was the “Why?” conversation, and you may know it. Was it the vaccines? Was it a preservative in the vaccines? Is autism environmental, hereditary, geographical? Does it run in my family or my husband’s? Is it because I had fertility treatments, drank from a bad water supply? And so on.
For a time, this topic was at the forefront of my mind as well, and I engaged in it with equal enthusiasm. But I began to see how circular it was. The difficult fact is that at this time, no one knows why children develop autism. All of the time I spent discussing it and comparing my own variables with others was time wasted. Instead of feeling ventilated, the topic only increased my sense of frustration and agony.
The other kind of conversation that I had to stop was the frequent reliving of the grief. When you get news of a lifelong disability like autism, most people traverse the traditional stages: Denial, Anger, Bargaining, Depression, and Acceptance. It is a loss, a very real loss, of the future you wanted for your child. But deciding how, with whom, and when to share those feelings is a different equation for people. I met some wonderful parents who simply could not carry on any other kind of conversation with the intensity they put into talking about how awful it was that this had happened to their family. I felt sympathetic, but it was all I could do to cope with my own pain. I began to shy away from weepy, angry, or depressed people who were focused only of their pain and their problems. I began to seek out parents who were either containing their feelings or moving past them. We developed bonds that allowed us to share our pain in more appropriate doses over time, and those bonds outlasted the freshness of the pain.
The pierce of my own wounds eased when I focused on “what next” instead of “where did I go wrong?” or “why us?” Moving forward should become the most important item on your list, and for a time you may have to be a little ruthless in how you choose your company. Even though you may be lying in bed at night wondering how this happened to you (was it the genes from your husband’s weird uncle or your pregnancy craving for corn dogs?), you will get past that. The bottom line is that it has happened. You need a group of close friends or family to talk to about your pain. Try not to make it a day-to-day obsession or to burden new acquaintances with it.
Collecting Your “A” Team
Aside from your personal friends, there is another core group of people that you will assemble over the next year, and they may differ from the kinds of people you’ve had in your life until now. But your team will be composed of people and professionals who will be important to your family’s continuing contentment.
The Core Team
- Pediatrician. Your child’s medical doctor.
- Child Psychologist. An autism expert who can make a diagnosis and recommendations for appropriate treatment.
- Speech Therapist. Also known as an SLP or speech and language pathologist, this person will help your child learn to understand and use words.
- Occupational Therapist. A therapist who uses creative activity to treat physical and sensory issues.
- In-Home Specialist. A therapist who works in the home (or sometimes at school) to develop positive behavior techniques and life skills for children with autism.
You will assemble a group of professionals to rely on for therapy and medical services. Each member will have a particular role to fill, and his or her knowledge will contribute to the well-being and education of your child. Generally speaking (and this may differ from child to child, just as specific needs will differ from child to child) a core team for a child on the spectrum will involve a pediatrician, a child psychologist, a speech therapist, an occupational therapist, and a home-therapy specialist (see box). With time, and depending on your child’s issues, you may add others, such as a neurologist, a developmental pediatrician, a physical therapist, a play therapist, specialized doctors or nutritionists, or junior therapists and aides.
As you begin setting up and carrying out service relationships with therapists, remember that these professionals may go on to become a vital part of your child’s learning as time goes on. They have a unique combination of professional expertise, direct knowledge of your child, and a detached perspective that no one else can provide. Over time you will get a sense of which providers are caring and dedicated versus those who are less concerned. You may get to know a great many people before you settle in with a core team, and even then you’ll find that changes happen as your needs, your school district requirements, and other people’s lives shift around you.
Parents ask, “Will this ever calm down? Will I ever be able to just relax?” The answer is twofold: Yes, things will settle down as your child’s needs become clearer and therefore easier to address. Your team will become more familiar to your family and the schedule will settle in. But you will probably never find that you can “just relax” when it comes to managing a team. Circumstances continually change, and you’ll always need to be involved to make sure your child’s therapy adjusts as his needs develop over time.
Getting to the Know the Pros
Cultivate relationships with the professional people you’d like to have as trusted advisers. That doesn’t mean you should rush the fences and try to create friendships with the professionals on your team, because that wouldn’t be in your child’s best interests. You want these people to be focused on your child in their professional capacities and to be able to advise you about his needs. Frankly, you don’t want to know about their personal problems any more than they want to hear about yours. Maintaining appropriate boundaries can be challenging, especially in the early days when you need these people so much and they seem to understand what you are facing better than so many other people in your life. But it is important to maintain the professional aspect of the relationship to keep the services they provide at their most valuable.
With that in mind, assist as they develop a bond with your child and encourage them to care. For that to happen you’ll have to provide important input. Respect and appropriate professional behavior tops the list. When your life is in turmoil it can seem natural for everyone around you to make allowances. But if that continues for long it will impact every relationship negatively. Always remember that for professional people, their time is their livelihood. Treat it respectfully and be careful never to abuse it.
The difficult part of these new professional relationships that center on your child is finding balance between respecting the opinions of others even as you maintain the ability to assert your own opinions. It is critical to remember that you know your child best. But these professionals may know autism and therapy practices that are new or strange to you.
Children with autism will behave differently with different people. They also may behave differently in different settings and under different sets of expectations. While a therapist may know a particular aspect of your child’s personality, you know many, entirely different sides of your child with a depth they will never match. That makes you the most important expert on your team. You want to be treated as such and to behave that way, too. You should express your opinions and feel able to make decisions that contradict professional advice if you believe it is the best thing to do.
Tips For Building Strong Professional Relationships
- Never be late for appointments. Always call if you are unavoidably detained. Always cancel if you cannot attend. These are golden, unbreakable rules.
- If you need extra time to talk about your child, say so at the beginning of an appointment so they can break early. Don’t monopolize the therapist at the end if your time is up.
- Respect their opinions in conversation.
- Let them know you value their work with your child.
- Remember to report back when you see progress at home that you can connect with their work.
- Support them by letting them know that you’d like to know about what they are doing and how you can carry over techniques at home. But be realistic about what you can do and don’t over-promise.
When you assert your own opinion over professional advice, do it respectfully, explaining why you hold the opinion you do, and including appropriate members of your team in decisions whenever possible. The team is there to help and support your efforts to teach your child. Each of them is important, but any therapist that does not treat you with respect or fails to consider your opinions is not a team member you want to keep.
If you find that a therapist treats you with condescension, or devalues you as “just the parent,” then you are probably not working with the right provider. How professionals interact with you is as important a factor in developing a successful relationship as how they relate to your child. Often parents try to work around bad chemistry, thinking, “Even though I think she’s awful, my little boy loves her.” But it is usually a matter of time before the aggravation outweighs the benefit. It can be frustrating to wait a long time to get in with a professional only to find the chemistry is terrible. But it happens. You’ll have to decide whether you can continue to see the provider during the time it takes to find a replacement, or if you must discontinue the relationship right away. Take stock by asking yourself if your child is benefiting from the time spent. If the answer is no, it’s easy, you know your next move. If the answer is somewhere in between yes and no, (he’s doing all right, but not nearly as well as he could be) then factor in other issues like how the appointment works with your schedule, how far the office is from home, or how unpleasant it is for you to go. Tally it up as impartially as possible and make a call. And refer always to Rule One: No intervention at all is better than bad intervention.
There may be times it is worthwhile to discuss discontent or concerns with a provider, but don’t worry if you don’t feel up to it. If a problem seems like a misunderstanding or one bad day, you can try to repair it or get past it. But if it is a general attitude that you don’t care for or a constant feeling of friction, it’s time to look for options in the field. Sometimes relationships don’t work even with good intentions on both sides. You have enough problems and challenges in your life at this time. Don’t let relationships (supposedly with people who are there to help) turn into a substantial part of the burden you bear.
As you meet therapists and discover your own personality preferences, watch your child’s reactions too. Most kids have a “type” and respond well to a certain profile. Knowing that type will be hugely helpful as you look for providers and ask around for advice as to who will work well on your team. Watch to see: Does your child respond best to “big” personalities, people who are entertaining and silly and put on a show? Or is this kind of person scary and unpredictable for him? Does he prefer a calm, soothing person who makes him feel safe? Perhaps he tends to warm up to women more than men, or acknowledges the authority of older therapists but tends to ignore younger people. My son could tell a tentative or inexperienced therapist a mile away and he tended to take wild advantage of their lack of confidence. I had to be careful to avoid tentative personalities in roles that required occasional firmness. These are observations that you should note as you are exposed to a variety of styles and personalities.
Your child is accustomed to you and your style, as well as your partner and other home relationships which have figured largely in his life up to now. He may seek adults who relate in similar ways to help him make sense of relationships as a whole. This tendency can help you to find people compatible with you both. But don’t rule out a particular type without giving it a try. In general I found that my son responded best to big personalities, people who were fun and vivacious. It was a tremendous surprise when we met our best speech therapist, a quiet, composed woman who communicated calm in her tone and manner. Rather than being under-stimulated or bored by her style, my son responded by matching her calm and paying attention to her every word. She stayed within his receptive language boundaries and never overwhelmed him. It was wonderful to see the inception of what became a long and successful relationship. We didn’t go ahead and fill his days with calm, quiet therapists, but the time he spent with this speech therapist was unique and a welcome change.
In addition to professionals, you also need to be building your “autism advice network,” a group of friends and support people who have more knowledge than you do. It is hugely helpful to be able to bounce ideas and trade resources with these contacts. Your autism advice network may contain members of your core professional team, but often it does not. It may contain certain personal friends, but not always. The autism advice network should be specifically composed of people who know about special education or autism. Often as not, they have a child on the spectrum themselves. These are parents who are moving confidently in the world you are joining. They have been building and managing a team, learning the ropes, and coping with autism longer than you have. Their expertise and advice will be critical. These are your waiting room pals, your Yahoo Groups listmates, and other special education contacts you meet along the way.
Last but not least, you will find yourself dealing with a host of new bureaucrats. There will be agency employees, school district officials, and possibly social workers who control funding and entrance to programs for individuals with disabilities in your area. One issue that new parents cannot help but feel is the sudden change in the family’s privacy. In order to gain access to the services and support your child requires, you have to interact with a variety of people about your child’s needs and your family’s circumstances. You are asked questions that seem personal and sometimes even rude. You are queried about the level of support you get from your extended family, the income you make, the way you live. I wish I could offer good advice for the emotional difficulty this can create. But it is an unpleasant feeling and no one likes it.
Listening to strangers talk about your child and his or her deficits dispassionately can also be awful. If the people involved are untrained or insensitive, it can take every ounce of patience to maintain a pleasant facade. Some of these situations require balance and extreme patience. It might be necessary to listen to a certain amount of such talk in meetings and to endure the burn when a disinterested voice enumerates your baby’s difficulties. But if you feel participants have gone from dispassionate to disdainful, you don’t need to continue to endure. You are not required to submit to cruelty and anyone doling it out should be confronted, reported, or dismissed, as you see fit. If you meet with such a bureaucrat, temper your reaction by sleeping on things overnight. If you wake feeling all the more convinced that your family’s feelings have been misused, write a letter to the person’s supervisor and copy another higher up supervisor if possible. Take whatever action seems appropriate and recover your dignity. Even though we are constantly asked to submit to a heartless system, sometimes the best thing you can do for your child and for yourself is to be strong and insist on compassionate treatment. Advocacy for your child means balance: Knowing when to submit and when to speak up. Discretion can be the better part of valor, but dignity is non-negotiable.
Jumping through hoops is part of working the system in your child’s favor. Most people want amicable relationships with the contacts they expect to deal with regularly. But reality can also be that the squeaky wheel gets the grease. Even though you want a pleasant relationship, that doesn’t mean that you need to be nice to the point of pain. If your own ability to endure and be patient is leading you to lose out on services or wait indefinitely for answers, go ahead and lose your cool! Even though an agreeable relationship is on your priority list, it falls well below getting your child what he needs. If you have to make a choice between being liked and getting help for your child, I wouldn’t hesitate to suggest sacrificing popularity.
A common tactic with agencies that are strapped for funding is to play the Delay Game. Not a fun game at all! But every day that they don’t answer your phone call is another day they don’t have to pay for service. Every confusing answer that leads to another round of phone calls buys them more time. Some parents will get wise to this trick and hold the agency’s feet to the fire more quickly. Others become victimized by the tactic and are strung along for months before getting some of what they need. Be in the savvy group. Never end a phone conversation without asking when the person will get back to you with the information you need or with the next step. If they refuse to be specific, let them know you will call in a day or two to see how they are doing. The bottom line is that you may need to get pesky and go beyond persistence to get past barriers. But you can do it. It is for your child.