Before you had your own children you saw a screaming kid in a restaurant, hands flailing with a parent trying to bargain a peace treaty. You said to yourself “My kid will never act like that; because I wont let them”. You commented about how the parent should do this, or try that. All the while, the child is still running the show and the patrons out of the restaurant.
After having your own child/children you see a parent who is trying to calm the child whose is screaming and who’s hands are covering their ears because the level of noise we don’t notice… is unbearable to a child with sensory issues. The noise level of the dinners, the clinking of glasses, the occasional plate to crash and hit the floor, the rushing and quick movement of the waiters all sets your child into a state of sensory overload. They are screaming and other patrons are looking with learning eyes; the same looks that you gave once. It hits you and now you understand. Nothing is as simple as it seems from the outside.
Having a child on the Spectrum is never easy. I get asked all the time how I do it. But how do I do what? I am a parent.I keep moving forward. I do what it takes to raise my children as best I can, despite what conditions they have. I will raise my child to be a productive member of society to the best of their ability. Anyone who tries to do less, needs to put the well being of their child first.
Yes, it takes work, and there is a lot of lonely days as a parent. The friends you had are replaced by the ABA’s, respite workers, OT’s, Speech therapists and other additional workers your child requires. When you have two or more children who require all these, the workers double; but if you can manage, sometimes your friends can too. Because they are not just workers who come into your home seven days a week, they are the people who see your dirty laundry (literally at times), who eat meals with your family, and who see you and your children at their worst.
What bothers me most about this lifestyle, is when the few “outsider” friends see this, they assume I have a nanny, a private cook or maid. They assume I have help and two parents become numerous ones to raise one child. At first, even my husband hated the notion of someone coming into our home and working with our child. But after he saw the behavior improve and the life of our child became better; he realized we were still the parents We were still the ones raising our child, disciplining our child and grooming him into the man who we hope he becomes. But without the help of these people, our child would be destined for less. He is reaching his true potential because of these people.
If you know of someone who has workers coming into their home, do not assume their life is easy. In fact, it is harder that you could imagine. My children don’t have regular play dates because they have 12 hours of OT, PT, Speech, ABA therapy a week. Therefore, I don’t get play dates either. My friends I had assume I was a recluse or felt that I had more important things to do. I do, it is called being a parent. I put my children’s needs first. If you can not accept that from me or someone you know, then we don’t have time to make for you. But that’s the catch. If you are accepting and understanding of our lifestyle, then making time to spend with you as a friend, can become the most important.
I learned that for a relationship to work for you, both friends need to see what they can get out of it. It might seem selfish; but its honesty. Is it a private sounding board, a gym buddy, a good story teller, or a every day companion? It takes a lot of energy to maintain a friendship. And having the lifestyle we live, it is important to realize who is a true friend. One who can accept you, your children and your lifestyle. So put your big girl pants on and start accessing those friendships you have. Remember its quality, not quantity.