When you first get that autism diagnosis, and even years later, it is easy to feel like you are all alone. Like there is no one to help you or that no one understands you. It’s important to realize that you have allies that you can turn to.
Family Members
Family members are great when you need someone to watch your kids so you can have some time to yourself, whether it’s to have a date night with your spouse to reconnect or unwind or to get things done that you can’t with kids around. Family members can also be a source of support to you – a sympathetic ear, an extra set of hands, or people you can take your child around in a judgement free zone.
It is important to let your family know beforehand of any triggers that you may know and to have a quiet spot set aside for your child should things overwhelm them. Anything you can do to make things run smoothly is good.
Even if your family isn’t close by, if they can just talk on the phone, it can be a lifeline that is desperately needed. While not all family members will be good at helping, we’ve found that there’s always someone who can.
Services
Services available vary from state to state, however every state does have resources available for people on the autism spectrum. Many services have waiting lists, making it very hard to ever receive funding. Don’t put all your eggs into one basket. Apply for any programs you are eligible for. Some programs are free, some you pay a co-pay and the rest is covered by your insurance, and some are funded by grants. Make sure you know if you are put on a waiting list if you need to reapply each year and when to do this.
Types of services available can include financial, medical, therapeutic, respite and life coping/lifestyle. Sometimes they will cover more than one type of service. Financial includes SSI, single use grants to purchase necessary items (communication equipment, educational programs, etc.) and ongoing specified financial assistance (typically for one year on whatever has been applied and approved for). Medical can be through Medicade or a state run program (typically for low income). Therapeutic can include ABA, speech or occupational therapy. Respite will provide a caregiver to watch your child to give you a break. This can be in your home or offsite. Life coping or lifestyle can include service animals, horseback riding programs or aids to assist in the home.
Talk to others in the special needs community about services available. Many times they will tell you what is available that they know about. You can ask special needs teacher and other families with special needs children.
Organizations
There are organizations both large and small, nationwide to city specific that can help. The hard part is finding the one(s) you need. The more hands on organizations are typically smaller and local. The large ones typically provide information and expect you to do the rest on your own. Larger cities will typically have more organizations. Know what you are looking for before trying to find an organization to help you. Do you need someone to help you get the services your child needs in school? Do you need a group that does activities for special needs kids to help with socialization?
The internet and word of mouth are your best ways to find organizations to help you. Be specific about what assistance you need and be sure to include your location as local organizations are typically the ones that are best suited to help you since some organizations only work with people in their area.
Support Groups
Support groups can be your biggest asset. These people have either gone through what you are going through, know of something that might be able to help you or just have a sympathetic ear. Don’t be afraid to share. People can’t help you if they don’t know what you need or are going through. Sometimes there are opportunities where you can help someone else or be that sympathetic ear, which for me is really rewarding knowing that I can help someone.
Support groups many times also have guest speakers who can tell you about something that you didn’t even know was available to you, help you to understand something better or help you work through a problem. They can also help you to find people with kids like yours that you can network with and share information or schedule play dates.
Joining a local support group was the second biggest help for us (after family), and in some cases the best help. They met once a month for an hour, and it was comforting to us just knowing that other people had gone through what we had, and they had survived. They helped us, and let us get in contact with people we didn’t know about that were able to help.
Since moving, we’ve not found one in our area to join, and so we’re currently looking at starting one. The biggest difference is now that we’ve been through so much, we’re going to be helping and guiding some we’re sure.
Sympathetic School Teachers and Staff
Finding these people is like finding Willy Wonka’s golden ticket. These people can be your greatest allies in the school system. They can point you to the right people to talk about a problem you are having. They can alert you to potential problems so you will be prepared. They will fight for your child. They can let you know what you can ask for and how you can help them get what your child needs.
Just be careful not to get them into trouble or hold a grudge if you weren’t able to get what your child needed. Some things take time to accomplish. Sometimes their hands are tied and they’ve done as much as they can.
Don’t be afraid to offer your ideas on how to get what your child needs and to suggest things that haven’t been done before. This could help them to find a different way to help your child.
Most importantly don’t expect them to do it all. Be ready to back them up.
Other Families With Children on the Autism Spectrum
There’s power in numbers. Find other parents who are having the same problems as you are. Work together to accomplish goals. It’s a lot harder for an administrator to ignore many people. If you find that you are making progress on something, share it with your child’s classmates and work together. We’ve done this successfully several times over the years. If everyone communicates with each other about what progress they’ve made and the responses they were given, many times you can find the loophole that you need to push something through to help all the kids.
Other parents can also offer suggestions about what they have done when their child has exhibited certain behaviors to help you with your child. Successes and failures can be helpful in determining what to do. Why reinvent the wheel? If their suggestions don’t work, you can always try to find one on your own.
It’s also nice to know you’re not on your own. It can be tough at times being the parent of a child(children) on the autism spectrum. Sometimes it’s just good to hear that your kid’s not crazy or bad or that your a terrible parent because your child isn’t “normal.” We’ve got each other’s backs. We can celebrate the the laughs (when you’re driving in the car and your son who was strapped into a car seat escapes and pops up next to you saying hi), the frustrations (the looks you get when your child is making happy noises and everyone stares), and the triumphs with you (when your kid says his first full sentence in 1st grade).
