Friday, July 31, 2015

Recognizing the Special in my Son with Special Needs

As I was dropping off my son at school this morning, one of B's therapists stopped by my car door to let me know she was leaving next week to take another job. She said she wanted to stay in touch and offered to watch B anytime. She said that although she is going to miss all of the kids she worked with, that B really touched her heart and she couldn't imagine never seeing him again.

I sat there astonished. As a parent of a child with severe special needs, people are never begging to watch or spend time with your child. It is an inconvenience to most. B is no longer a cute toddler. He is a full size kid that still acts like a toddler. He is a handful most of the time.

I know she has seen B at his absolute worst and she still loves him and accepts him for who he is. As tears welled in my eyes, I told her that I would absolutely find a way for them to hang out.

This week has been one of those weeks that Autism has gotten to me. I was told by another Autism mom several years ago that it gets easier. For my family, it hasn't. There are months where all we are doing is managing weird behavior after weird behavior. The never ending demands make you lose sight of how wonderful your child is.

Today, B's therapist reminded me how special my son is. I can't thank her enough for making me stop thinking about the behaviors for a moment and remember how valuable he is and that I am lucky to be his mom.

Wednesday, April 1, 2015

Autism Awareness and Acceptance in the Month of April

I both love and loath the month of April. In Texas, it is a time of beauty as we welcome our state flower, the bluebonnet, as well as many other beautiful wildflowers blooming across our highways and country roads. It is also Autism Awareness month.

Why do I loath Autism Awareness month? Unfortunately, I see that it isn't something that brings Autism communities together, but rather divides us. Autism is one of the few conditions that I have seen where the charities actually dislike each other. Some are fighting for acceptance, some want awareness, some have other agendas all together. It can be seen all over Facebook and it is very negative and I wish it would stop.

I think that the controversy of why our children have autism is part of the problem. Lets put aside if our children were born this way or if they are vaccine injured and just strive to make people aware that our children are humans too. They want to be loved and cared for as much as the next person.

Look beyond the stims and behaviors and see what these children are...just children. My child is a challenge. Most days he is a toddler in an 8 year old body, but I often see how certain typical children act and I am thankful that my child isn't hateful to others or mean. I am thankful that he is not spoiled by the identity that society wants to put on him. I am thankful he still wants kisses and hugs from me. I am thankful he still finds the wonder in nature and animals. Something can be said for that simplicity.

So I am choosing to make Autism Awareness Month a celebration of my darling child. I am deciding to put aside the worries of what will be and embrace the now. I am going to try to be more patient because if I want the outside world to accept my child then that needs to start with me. The only agenda I will have this month will be spread to the world what an amazing child I have.

I encourage other moms, dads, grandparents, aunts, uncles, friends, and neighbors to do the same for the children in your life touched by Autism. Lets show the world the greatness and potential we see in those children's eyes. Then we won't need those competing autism charities to spread the word for us, we can do it ourselves.

Friday, March 13, 2015

Long Time No Blog

It has been a very long time since I have put an entry on this blog. Mainly because I have been very disheartened with my son's progress. We have tried so many interventions and nothing seems to work for him.

I am so happy for my friends' children that have made so many strides with their Autism Journey. I also am so jealous. My son still does not talk more than an average 1 year old although he is almost 9. He cannot read or write and although he has made progress in areas of sensory and behavior, but cognition is a daily struggle. I wonder if I took a different path would things be different. I just don't know. Is my son just supposed to be as God, however you define him/her/it, has decided he should be? It is very hard to say.

Everyday is a challenge in my home. I want my typical son to be well adjusted, which means despite the challenges we have with B, we have him in sports and after school activities. That means our family is often divided because B can't tolerate sitting around watching his brother do things.

We hardly ever have anyone over because I know that being around B is either uncomfortable for family and friends or they don't take the time to get to know his very sweet spirit.

My friends think that my husband and I are a match made in heaven, but it is very hard to have a successful marriage when your daily life is just making sure that your son is not going to scream for 3 hours out of the day, eat something that is not food in the house, or pee in your bed. We love each other dearly, but it is easy to feel under appreciated in those circumstances.

I guess what I am trying to say is that at this point our life is merely existing for our children. My husband and I laugh because the plan when we bought our house was to move in 5 years. We have lived here for almost 9 years because despite the great salaries we have, the cost of B's interventions over the years do not allow us to live in the lifestyle someone with our incomes should allow.

It is easy to get down in the dumps, but we can only stay there for so long. I try to reflect on what we do have and, that in the darkest of moments, we do have a better life than many. It is not about being better than someone else or having a life that is typical. It is about appreciating what you do have. I need to remind myself of that more.