When Your Child Is Diagnosed With Autism: 10 Things You Need to Know
1) You will feel like you are on a roller coaster of emotions. This is completely normal. Feeling overwhelmed with sadness, anger and grief is to be expected. If you are able to, this is a good time to find someone to talk to who is outside of your immediate circle, preferably a therapist. Remember that members of your family will also be grieving, so everyone in your family should do their best to support each other through this process.
2) Not all advice is good advice. People want to help and will often give you advice that may or may not be helpful. Do your research and consult your physician before taking on intensive diet regimens, cleanses or dietary supplements. While many people will sing their praises, they may not be right for your child.
3) You know your child best, so trust your gut. In the early days after your child's diagnosis, there will be a lot of information coming at you. Therapists will make recommendations, there will be assessments and reports and paperwork coming out of your ears. While professionals are experts in their field, you have a PhD in your child. Don't underestimate how valuable your insights into your child are and make sure you speak up if you are uncomfortable with any recommendations or conclusions that are being made regarding your child's treatment and care.
4) It's a marathon, not a race. You will feel like you need to do everything for your child, right now. Not only will that burn you out, but it will burn your child out as well. Remember, change is very difficult for your child. There are many different therapies and social groups that your child will benefit from, but ease into them so that you don't overwhelm both yourself and your child. Most children start with a few hours of behaviour therapy a week and gradually increase depending on their age and their needs. While young children are definitely sponges, even they reach the saturation point if too much is piled on them.
5) Ask for help and be specific about what you need. If you need someone to help with driving your child to and from therapy appointments, or to watch your other children while you attend meetings with therapists, ask for help. Your friends and family want to help you, but they often don't know what to do (hence the not-so-helpful emails about autism news stories filling your inbox). You may need someone to do your dishes or vacuum your house - so ask! If you need someone to pick up groceries for you or drop off a casserole, don't be proud - let your support network know. People will step up.
6)Take time for yourself. At first, this will be challenging for you. In fact, you may even feel guilty or selfish for doing things for yourself. The best thing you can do for your child is to be happy and strong. This requires you to do things like get your hair done, go out for lunch with a friend, or wander around a bookstore for an hour if that is something you enjoy. Spending time with your friends, and talking about something other than autism is the best thing you can do for your sanity. Allowing yourself to get burnt out helps nobody, least of all your child.
7) Make time for your relationship. It is really easy to get so wrapped up in "fixing" your child that you sacrifice investing time into your relationship with your significant other. Making time in your schedule will be a challenge, especially at the end of the day when you are both exhausted. It may be that all the two of you are able to muster is watching your favourite TV show together, but make sure you stay connected and in tune with how your partner is feeling.
8) The internet is not always your friend. There is a lot of information online, some of it good, some of it completely inaccurate. Be sparing with your online research and always consider the source. Attractive celebrities might consider themselves medical experts, but they are usually about as much of an "expert" as you are.
9) Celebrate the small wins like they are Olympic gold medals and don't let the setbacks ruin your day. There will be days that fill you with despair and make you question how you are ever going to get through this journey. But there will also be days when your child shows you a new skill that has finally clicked into place after months of hard work. Those wins, as tiny as they may be, are what will keep you going. Cheering for your child is good for your soul. When it appears that your child may have regressed, don't lose hope. Remember the saying "two steps forward, one step back" and keep the faith that your child will get through this hard time, as will you.
10) Remember to love your child with all your heart, no matter what.While you may never have the future you envisioned with your child, remember that your child is still worthy of your love. Your child is still amazing and full of potential. And as the great philosopher Lionel Richie once sang, "Love will conquer all."
Katrina Carefoot blogs at ficklefeline.ca. She is an Autism advocate, and is documenting her Autistic son Max's journey for a book she is writing on how to achieve a best outcome through early intervention and intensive therapy.