What You Need To Know For The Journey Ahead!
Just got the news of an autism diagnosis? Wondering what to do next? Already worrying about the future? Wondering if there is hope for the future? These concerns and questions - and hundreds more like them commonly flood the minds of many parents during their drive home from the clinic or hospital where they just received news that their child now has a diagnosis of autism. As the parent of a newly diagnosed child, there will be lots of things that you will need to know soon enough., but for now, know this - there is hope, and there is help!
I'd like to encourage you to make a commitment to include what I am about to share with you as an important part of every day - from here on out! It will be helpful for you to make this a vital part of your daily routine. In fact, it will become just as important as anything you do for your child...TAKE A DEEP BREATH AND...RELAX! Relax? Some of you may be saying, "But I just got this awful news! What do you mean relax - are you kidding?" No, really, it's going to be okay. You're getting ready to embark upon a lifelong journey with your child or your loved one. It will be important to learn how to pace yourself. Learning how to make time to take some time regularly to relax will help make this journey easier! Doing it will not only help you recharge and hang in there for the long haul, but it will help you focus better so that you can make good decisions about your child's health, education, and therapy.
Our children, our spouses, and the rest of our family members need us to be at our best - so don't feel guilty for taking some "me time" for yourself as you go along. Sometimes, parents can find themselves becoming isolated and consumed while trying to parent a child with special needs. There are some challenges that come with this job, and a good support system, whether it's family, friends, professional counseling, a church, or a support group, can make all the difference!
Life will be different now, but you'll find that your life will settle into a new "normal." There will be points of joy along the way for you to cherish and enjoy as well. An autism diagnosis is not the end of the world, it is simply the beginning of a new one.. Be encouraged, take heart, and never, never give up hope! There are many other parents who are walking this journey who understand the challenges and the joys of parenting a child on the spectrum. You are NOT alone!
Annette Brandenburg
Founder, Executive Director
Southwest Missouri Autism Network
Getting Started
In the state of Missouri, there are many services and supports available for children with a diagnosis of autism! f you live in Southwest Missouri, after you've received a medical diagnosis of autism for your child, contact the Regional Office at the Department of Mental Health.
The link below will take you directly to the office you need to contact in order to set up an appointment for an intake interview to determine whether your child qualifies for services through the Regional Office. Some of the services include access to social groups, music therapy, horseback riding, and a whole host of other special activities designed for kids on the spectrum. Agencies like TouchPoint Life Skills, Judevine, Abilities First, First Step, and Next Step are just a few of them. Keep in mind that even with a diagnosis, your child may not qualify for services through the Regional Office. They must meet certain criteria in order to qualify for services. However, if for some reason your child doesn't qualify, do NOT let this discourage you, there is still help! Once it is determined that your child qualifies for services, they will be assigned what is called a Service Coordinator who will help you determine what services may be best suited for him or her. After your child's diagnosis of autism is confirmed, contact the Regional Office right away so that you can get your child enrolled in the system to begin receiving services as soon as possible! To schedule an appointment to apply for services through the Regional Office, click here: http://dmh.mo.gov/springfield/Intake.htm If You Should Be Told You Don't Qualify: If you should be told your child doesn't qualify for services through the Regional Center - but you really believe that he or she definitely needs some of the services and supports that are available, do not despair, try again. Several parents have reported struggles in answering some of the questions on the intake survey. Some have stated that they were a little confused and overwhelmed as they were filling out the application for services. Afterwards, they realized their answers really didn't reflect the reality of their children's challenges. Remember, as you answer the questions, try to think of how your child responds to things outside of his comfort zone - away from you, around others. Think about the different settings your child is in - or will be in, and how you believe they will be able to function in those settings. If your child still winds up not qualifying for services through the Regional Office, many insurance plans will cover weekly therapy sessions with a psychologist or counselor. Locate a psychologist or counselor who has experience dealing with autism disorders. Find one who will take your child on as a client, and will work with them to develop a plan tailored to meet your child's developmental needs. A good psychologist can also serve as a parent coach for you as you navigate the challenges of parenting a child on the spectrum. Some of them may even be willing to assist with school issues, and will work with staff from your child's school. Whether you qualify for services through the Regional Office or not, having a psychologist involved in your child's ongoing therapy plan will be so beneficial for them - and for the whole family! Many schools are doing great things for children with special needs, and while the school is mandated to serve and support your child, finding additional therapy outside of the school system will help ensure that your child receives a well rounded support system that addresses all of his or her needs. This will also help maximize their potential for development and success outside of the school system that will complement and support what he or she is receiving in school. Sensory Processing Disorder Click for more info.
Many times when a child has autism, they may also have sensory issues or what's known as Sensory Processing Disorder (SPD). They may be extra sensitive to noise, light, sound, touch, and smell. Their nervous system may have difficulty organizing itself to respond appropriately to these kinds of input. Some kids over register input, and some kids under register input, while some may do a little bit of both. It can be a little complicated to figure out sometimes.
At times it's hard to know whether the behavior is a result of unmet sensory needs, the autism - or just a kid being a kid! Unmet sensory needs can sometimes result in some pretty bizarre, unexplainable behaviors, perhaps even meltdowns. If an OT evaluation was not included in the initial evaluation for autism, it will be important to seek one out to rule out or determine whether your child is struggling with this. The school will perform one in it's testing, but it will be helpful for you to have an independent outside OT evaluation separate from the school's. An outside OT will be able to help you better understand your child's sensory needs and help you customize what's called a sensory diet that you can use with your child at home. A sensory diet is simply a schedule of activities that you will do with your child to give them the sensory input they need based on what the OT has determined. See your pediatrician for a referral and a complete list of qualified Occupational Therapists.For more information about Sensory Processing Disorder click on these links: http://out-of-sync-child.com/ http://www.sensory-processing-disorder.com/step-by-step-guide-for-spd-parents.html Baby Steps To Progress
Kids with autism can learn - they just learn differently, and many times at a different pace that's different than other kiddos. Let this be okay! Be encouraged. Many parents know that our children tend to make progress in baby steps. That concept may seem a little frustrating at first...especially when we see other kiddos meeting and exceeding all of those important childhood milestones so fast and furiously.
We cannot afford to fall into the trap of comparing our children with neurotypical children. There really is no comparison! Kids with autism have unique talents and abilities all their own. It's important not to put unrealistic expectations upon them that they simply cannot achieve. Sometimes it takes awhile for reality to sink in about the limitations our children may have. Never give up hope, but be practical and realistic. On the other hand though, don't fall into the trap of keeping your child in the "safe zone" so much to the point that they are never challenged or pushed to stretch themselves! They can learn. It will just be important to be able to recognize when they've been stretched enough, and when they need to take a break and try again another time. Many parents come to find the quirky oddities of their child's autism endearing and lovable. When you begin to see the world through your child's autism, it opens up a whole new way of seeing things. Some days it will make you laugh, and some days it might make you cry - and some days you may just do both! But it's okay. Let yourself have a good cry every now and then, but never give up hope! Helpful Agencies To Contact About School Issues
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Missouri Department of Elementary and Secondary Education (Dispute Resolution)
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Bridging the Gap Between School and Home
Many schools in our area offer great supports for children with special needs. More than ever before, special services and supports are becoming available for children with special needs in the school setting. However, it's important for parents to look at the big picture of their child's development and recognize that schools simply cannot do it all. Seeking additional therapies and support to address issues and challenges that your child faces outside of the school day can help increase their chances for overall developmental success. Independent outside therapies can also help fill in the gaps for areas of your child's development that the school is simply not set up to address, i.e., bathing, eating, family relationships, etc. When there are bumps in the road at school, having an expert on hand to consult with can be so beneficial, not only for your child, but for the staff who work with him or her in the school setting as well. Understanding the School's Role In Your Child's Development and Progress You may find yourself in the role of not only advocating for your child, but that of also teaching your child's teacher about how autism affects your child. It can be difficult at times not to become emotional when it comes to your child - especially if they are going through a tough time and it appears that no one seems to have solutions to the challenges. The IEP process is tough for everyone - on both sides of the table. As unfair as this may sound, time and time again I have seen - and experienced, that if you as the parent come across as emotional or irrational, your effectiveness as your child's advocate can be greatly compromised. Often, school officials will feel justified ignoring an "emotional" and "irrational" parent. So no matter what - I mean no matter what - be a cool cookie, stay calm, stay focused, and keep it about your child's needs. Learn the art of effective advocacy and negotiation. Really, in the end, you want to have a good relationship with your child's teachers...it's in your child's best interest to be on good terms with his or her teacher. A Medical Diagnosis Is Not the Same as an Educational Evaluation The one point that seems to confuse many parents (and even some school staff) who are new to the IEP process, is the fact that even though you may have just gone through testing and diagnosis with a medical professional outside of the school system to get a diagnosis for your child, the school still has to conduct it's own testing. The terminology sometimes gets a little tricky here. Schools are not authorized or qualified to medically diagnose a child. The testing they perform is for the express purpose of determining how the child is performing in an academic setting. Regardless of any outside diagnosis you have secured for your child, schools are still mandated by law to conduct an academic or educational evaluation. Sometimes schools may use the term "educational diagnosis" but that can be confusing and often misleading to parents. There are thirteen categories that a child can be placed in for services. The educational evaluation the school conducts gives them information to guide them in which educational category to place a child. It is possible for a child to have a disability that doesn't impact them at school. However, it's important for everyone to keep in mind that good or even great academic scores are not the sole indicator of whether a child does or does not qualify for services in the school setting. If even one major life skill is affected, the school has a responsibility to support the child in the area(s) he or she is struggling with. Some of those areas could include help with developing social skills, or help with building language skills. It could be the need for a sensory diet, or accommodations in some other area. How To Get The Ball Rolling To Get Help For Your Child In School If you have not already done so, go to the special education department at your child's school, provide them with a copy of any testing and evaluations that were performed outside of the school district. Submit a formal request to have your child evaluated. "It will be important to submit a signed, written and dated request for an evaluation." Sending an email, or just having a conversation with the school principal, or your child's homeroom teacher will not guarantee that a request for an evaluation will get to the people who perform the evaluation. Often, principals and other staff members are not aware of just how the special education process works. Many times they do not have the training to recognize the red flags that indicate your child is having a problem that is directly related to a disability. Sometimes children with undiagnosed disabilities - or disabilities that the school refuses to acknowledge - are suspended from school. Sometimes they are dealt with punitively in other ways before they get help. Unfortunately, without an IEP in place, these children are subject to standard school disciplinary measures. The time that you are waiting for the school to complete its evaluation of your child can be awkward. Especially, if your child is experiencing difficulties at school related to what you know is their disability. It's heartbreaking to see children with medical disabilities be suspended from school and/or be punitively disciplined. Often times, these approaches only worsen the problems children with challenges are already having at school. Do not despair. Continue to advocate for your child in ways that are respectful and dignified. Stay calm and keep your thoughts organized so you can focus on what you need to do. Document everything you do, and note every conversation you have with anyone you speak to in the school system as you continue your attempts to work with the school to get help for your child at school. Put your request for an evaluation in writing and word it something like this. "I am requesting a full evaluation of my child _______________ for consideration of special education services." Sign it and attach a copy of your child's psychological and medical evaluation. If you have a statement of observations from your child's teacher or other staff personnel that further supports your request, include that as well. Be positive and friendly with ALL of the school staff. No matter how difficult the situation, no matter how difficult a school official may be to deal with, remember, they have a tough job too. When it's all said and done, you want to be able to sit down with them and work together to come up with a plan that is going to help your child have the best chances for success. These are the folks who will be working with your child after the dust has settled. Having a good rapport with school staff is in your child's best interest! If you don't agree with something, make your point calmly and respectfully. If you encounter resistance, but believe your point is valid, be firm but polite. Repeat yourself if necessary, but never raise your voice or make rude remarks. If you are perceived as being emotional, it could reduce your credibility - and hinder others from taking you seriously. Sometimes when it's difficult to come to an agreement, it's all the more important for everyone on all sides to listen carefully to each other. It's often a stressful time, and sometimes afterward it's hard to accurately remember everything that was said. Sometimes it's helpful to bring a friend, or a representative from the community to assist you, they could even take notes for you. As parents, we like to think we know everything there is to know about our children - and we should, right? However, we need to be open minded enough to realize that in a different setting around different people, our child's needs, and his or her performance may be totally different. Being open minded and willing to listen to what the school is saying about your child as you advocate for them, can go a long way to help reduce tension at the school meeting table. Finally, always remember that YOU are your child's best advocate! If you are not happy with the results of the testing the school performed, you have the right to request an independent evaluation, to be conducted at the school's expense. This can be a difficult process, but just remember there are many resources available to parents in the Southwest Missouri region...if you are new to parenting a child with autism, your life's greatest work is just beginning! Everything will be alright, help is available. Helpful Books To Guide You
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There are many more resources available to parents in the Springfield and surrounding communities, these are only a few to help get you started on your journey!