I remember getting my son’s autism diagnosis like it was yesterday. Talk about mixed emotions. First sadness, then scared, then finally relief. Relief that we finally knew and now we could move on and do what was best for our child.
So how do you move on after getting an autism diagnosis? First breathe. Second realize that you didn’t do anything wrong. Third, realize that this is a good thing. Chances are, that if you needed to get a diagnosis in the first place then something wasn’t normal. The reason that a diagnosis is a good thing is that now you can get assistance and now you have answers.
You’re a Great Parent
Next realize that you are a great parent! It’s hard and scary to even get your child (or yourself) tested. While a lot of stigma has been erased, it still isn’t easy admitting that your child doesn’t meet the definition of “normal”.
For a while when my child would have major meltdowns and I would ask myself “Am I a bad parent? Do I just have a bad child? Why doesn’t he behave like other kids?” Now I had an answer – I am not a bad parent and I do not have a bad child. I have a child that needs extra help – and that’s okay.
Getting Your Child Help
So now that you’ve calmed down and accepted the diagnosis, it’s time to use this knowledge to help your child (or yourself). First make sure you have a copy of the diagnosis. Make sure it is on official letterhead. Next make copies – never give out your original – to distribute to the necessary parties (more on this later). Put your original in a safe place – you will need this many times over the years so don’t lose it.
The next step is finding out what services you qualify for. An autism diagnosis, no matter the severity, can open up many forms of assistance depending on what you and your child need both in the school system and outside of school.
For now, we will focus on preschool and elementary school ages as this is when the majority of people are diagnosed. With an autism diagnosis you qualify for an IEP (Individualized Education Plan) that will specify what assistance the school system is required to provide your child. This is developed by a team (school personnel and parents/guardians), which will be reviewed every year. No two IEP’s are identical and just because one child was able to get an accommodation, doesn’t mean that yours will as well, but always ask. We asked for lots of accommodations and we received most, but not all. For more on IEP’s check out our article that breaks things down.
Now that your IEP is in place try looking around your area and see what other services are available. This can be easy or difficult depending on the state/country you live in. Some areas have more services available than others. Be sure to check for local, private non-profit agencies as well. The webpage listed below has many agencies listed that you might want to check out (please note that I am not endorsing any of them, just providing information, so please do your own research).
https://www.autismempowerment.org/resource-center/national-and-international-resources/
Support for You the Parent
Support groups are wonderful. It’s nice to know that you’re not the only one going through this. The moral support is great. Shared experiences and helpful advise from someone who has already gone through what you are going through can be really helpful. Our support group in Florida frequently had guest speakers who would come in and discuss topics relevant to the group. Typically you can find a local support group through an online search or through Facebook groups. I highly recommend them. They helped us a lot and it was nice to help others too.
Respite programs are great. This allows the parents to have time together away from the children to talk and spend time together strengthening their marriage. If you can’t find or qualify for a respite program, try setting aside a date night once a month. In Florida there is a great group called Nathaniel’s Hope who sponsors a Buddy Break program almost every month. Our children enjoyed this program tremendously. I highly recommend checking it out if you have a Buddy Break near you.
Learning Your Child’s Signals
Many times if you observe your child you will be able to pick up on cues to things that will trigger a meltdown, confuse them or that they need help with. By noticing them and responding before the problem escalates you can make things run much smoother in your household. Be sure to communicate with others who work with your child and make sure you are consistent in how you respond to behaviors and that you also share information about triggers and if there is a change to a schedule/routine/environment which may cause problems. By working as a team, everyone’s life runs better.
Your child is still the same person he/she was before they were tested. They still want love and acceptance. Don’t be afraid to ask for help or advise from someone who has gone through or is going through what you are. You’d be surprised at the number of families who like helping others. There will be good days and bad days – focus on the good to get through the bad.
Some times it will require sacrifice on other members of the family. There are many things I would love to do, but I know will cause a problem with my child. My children have a hard time with crowds and noise and as a result, there are many things that we can’t do. However, there are lots of other things they like to do and enjoy so we do those things instead.
It’s not always easy, but I love my kiddos and cherish every one of their milestones and accomplishments. Their hugs and smiles are the greatest. At times they really frustrate me, but all it takes is a smile and big hug and it all melts away.
I wish you luck and success on your journey. Remember – you’re not alone.
