I read a blog recently of a woman with children on the Autism spectrum. She was looking back and wrote what she would say to herself if she could go back in time and talk to herself when it all started. It was about the advice she would give to herself.
She then encouraged others to post their advice to themselves so here is my shot at it.
#1 – Prayer Works Really It Does!
I have another Autism mom friend who is excited today about going to a bible study because they are going to review their prayers from the year before and see how the Lord has responded to those prayers. My guess is she is excited because she knows it is going to be a blessing to see the many incredible things the Lord has done.
I was watching Dr. Oz. I don’t normally watch this show because we only recently got a TV antenna to pick up a few channels and I was flipping through and noticed a segment on prayer. They have studied the effects of prayer on folks and their health and have scientifically proven that prayer helps people. It suggested that our bodies are more able to fight illness when we have hope in something. I believe that the Lord has made our bodies in such a way as to rejuvenate itself but I also strongly believe that that scientific evidence of the body’s ability to rejuvenate is a strength directly given from God and that not all people tap into that.
All this to say, not that I did not believe in prayer when our children were diagnosed with Autism, but that I wasn’t sure what I should pray and I suppose, I didn’t realize how powerful it really was and all the aspects of prayer for more than just helping in time of trouble. I have discovered that prayer is not only desired by God but so much so, that He will prompt others to pray when you can’t! Prayer is essential!
#2 – Longsuffering is a fruit of the spirit which is a good thing but dig your feet in and hang on!
This is the tough one. When Andy was diagnosed, the neurologist took my hand and said “this is going to be hard”. He was neither joking nor lying and he wanted me to really understand that cold hard fact.
If you are reading this and are just starting this journey into the world of parenting a child with Autism, you need to understand that though hope for improvement in your child through interventions is not unrealistic, the work it will take is not easy.
The possibility that this is a lifetime struggle should also be understood and I would say that this is half the battle! If you find yourself wishing things were different, stop! That only leads to self pity which will not be productive and will lead to losing friends. As much as friends love you and want to help you in any way they can, self pity is wearing on friendships. Friends are always willing to be that shoulder to cry on but they have families and struggles too and there is a point where too much is just too much. Always referring to what could be or lamenting what you don’t have is like a poem I read once of being in Holland and wishing you were in Italy. *Every once in a while, there are those times when you just have to have your self pity moment and cry it out. But I would say to have those cries in your corner by yourself for those occasional times and then take a moment to pray and then pick yourself up and carry on.
I often describe my faith as hanging on with a white knuckle grip. Clinging, hanging on to the only lifeline I’ve got and I am not letting go for nothing kind of grip! Autism will shake you to the core in so many different ways and so will the things of the world we live in. But this is not forever for us. It will come to an end believe it or not. Before you start planning for retirement, start planning for your eternityment! If you don’t know where you are headed should your life here be cut short then this should be a #1 priority to figure that out. The manual for this is the Bible and I would start reading in John. Not only does your eternityment include a comfortable and lavish life after death, it offers perks for this world too including comfort for the soul! I kid around but my relationship with my Lord and Saviour Jesus is what I am talking about being my lifeline and what I cling to. So many folks take great effort to plan their retirement and then never get to that point and end up facing something they never thought of let alone planned for. This is serious stuff!
Now that we have established that this is going to be hard, know that there will be breathers. Times of refreshment, encouragement and those perfect moments for taking selfies and posting on Facebook.
Yes things will be consistently more difficult for an autism family but there will be rewarding moments when all things will go your way, take a time to celebrate and take a picture to record the moment. There will be little gems that will bless you and though a NT (neurotypical) family experiences those gems all the time, it will be 10 times more rewarding to a family that doesn’t experience them all the time and it will bring you to tears and stay with you forever! Cherish them! Put them in your pocket to pull out every once in a while when times are tough. Yes, I am talking warm fuzzies!
#3 – Take time to stop and smell the roses!
I am going to use an analogy here and forgive me if it sounds lame because I am going to coin a cheesy phrase. So many times we are signed up for so many things and are on such tight time constraints that we are running a race where we can see the finish line but are never quite there and are so focused on that finish line that we miss the scenery all around us. Our kids see it and want to stop to smell those roses but we see only the finish line and not only do our kids miss out but so do we.
Kids with Autism strive on structure and do well with schedules so it can be hard to recognize those moments when we should stop and change that. I have found that my kids most times loved the moments we take to stop and step out and do something different and something special. Often they are the ones that have initiated it in their own non-verbal way! Stop when you see them cueing you, look at what they are trying to communicate and take that detour, play hooky if you have to. You may regret it but it is possible you may instead end up being so glad you did it.
#4 – You are the best woman/man for the job!
Although I have met many great and wonderful and downright awesome people in my lifetime, I have yet to have met a perfect person other than my Lord Jesus. He is awesome! Anyone else is going to have flaws. Though it is not our job to find out what everyone else’s flaws are, it is also not our job to say that our flaws disqualify us to parent our children. You are the best person for the job by default. You are their parent, they have your genes, they are living with some of your personality traits, they share the same allergies and stout legs. You live together and therefore know each other more personally then a family friend. So that friend who does sensational crafts and homemade gifts are not going to understand that your child’s needs are so that an experience in buying a store bought gift is much more valuable than taping into their artistic talent.
You will make mistakes, you will have regrets but understand that regardless of those, growth can and will still happen and kids love you just because you are their parents so you do not have to earn it. You don’t have to be the good mommy all the time, you will need to enforce things that they do not want but they will still love you. You will need to make hard decisions and what makes that even harder is when you doubt yourself.
If you are going to be a good parent to your children then it is best you know that you are the best person for the job, flaws and all!
If you have that eternityment plan this is one of those perks I was talking about “…My grace is sufficient for you, for My strength is made perfect in weakness…” 2 Cor. 12:9
#5 – Aim high
Perhaps it is that optimistic personality trait of mine that gives me the propensity to not make lofty goals. I am the glass is half full kind of gal so if it is half full then I don’t need much to fill it right? Well, this is the last thing I would tell myself. Aim high, go for the gold, shoot for the stars! There is a difference between not being thankful and looking for what is best. I know, it is such a struggle to discern our own hearts. This is a huge part of parenting children with disabilities is what seems to be a contradiction of desires in 1) being thankful for these precious gifts from God and their distinct personalities as they are and 2) wanting them to become better in order to live a better life.
I have to confess, I do not even know what advice to give on this except to be grateful, not regretful. If you aim high on what you and your family will see in growth, you have much excitement, anticipation and a lot to look forward to and a goal to work on as a team. If you seek out ways to improve and you are able to, there is much to celebrate. If you do not aim high and settle for less then you will look back and regret not making that effort.
My husband attended a sleep seminar because our boys were tag teaming in the night and we were not getting a whole lot of sleep. We incorporated a few simple strategies and before we knew it, the boys were going to bed at a regular hour willingly and staying in their beds and falling asleep without lights, movies or snacks and sleeping through the night. It would be really silly to stay as we were and be grateful for the sleep we could get. It was not being ungrateful to seek that change and to take the steps to achieve it. If we aim high on other aspects of our lives, we may see many great things happen. We continue to love our boys no matter what the outcomes are but also love doing those victory dances!
So I have spent all morning with this little pep talk to myself so I will stop at 5 tips. Obviously this is meant to be shared (giggle). Perhaps there will be a part 2.