What a week it has been for all. As we lengthen our prayers list, could I ask for one? I received a heart-wrenching email from Tristan’s school. He lives 3 hours away. If feels like I sent my giant toddler off to college. The email sent said home visitation would be postponed for two weeks then re-evaluated due to Covid-19. School is canceled. Community outings are canceled.
Parenting is hard work. Adding an element of any disability in parenting poses extra challenges. In addition, there are also extra blessings. One of them is the life lessons that unfold before your eyes. I encountered one of these “life lessons” the other day.
When Tristan was very young I use to keep him in arms reach in an effort to keep him engaged with people. He would help me around the house. I later realized it benefited him in many other ways. (following directions, completing tasks, feeling accomplished, etc.) I observed over time that he thoroughly enjoys doing “chores.” He is the one person I know that does not dread completing them.
The other month I invited him to help me wash the dishes. I told him he could rinse them. He LOVED it! He was smiling ear to ear. He thought it was “water play” not work. We completed an activity together. I have pondered on his joy and how contagious it was.
I think it is important to shed some light on the myths and lies that exist around issues of autism. Especially when the autism population is growing or more people are being diagnosed. (That is a topic to discuss another time.)
The myth is that there are programs for everything and for everyone who has autism. The hard truth is there is not a plethora of resources to tap into! When families are faced with a crisis due to autism there is even less.
Let me explain and give some details.
Two years ago my husband and I looked at each other and asked ourselves, “Are we the first family in the state of Indiana to have a 13-year-old non-verbal autistic child with severe behaviors?” I know we aren’t but it felt this way. And sometimes it still does. We have been denied programs and other avenues of help due to:
his age-too young or too old, his cognitive level, he is non-verbal, he lives at home(before he left our home), he is not a ward of the state, etc.
There will be Tsunami of children and young adults that will need care for their entire life. The State of Indiana needs to do better.
There needs to be:
Day Programs during the summer months (No Public Schools do not provide summer school.)
Inpatient Acute Hospitals
Group homes in counties all over the state for elementary, middle-school, and high-schoolers with developmental needs beyond a family’s ability to handle. Believe it or not there are families with very young children who need this type of program.
I’m not really a fan of the government over seeing this. However, the need is so vast that anything at this point would be helpful. Ideally communities would come together and start something. A few parents have and I don’t really know how they muster the energy. At the end of the day most of us parenting special needs children are purely exhausted from the normal activities of living.
Hopefully, my story will compel you the reader jump into action. It’s not enough for the community to be aware of autism. It is important to be active in the special needs community. I understand the average person is not immersed in the special need culture to know how to help. That’s okay. Ride along with me in this journey of life I will share from my heart and hopefully spur you to help make a difference!
I am always grateful for the people God puts in our lives to help with Tristan. Sometimes these people have had business or service ideas that are big, and we benefit from them. One place I want to talk about is Harsha Behavioral Center in Terre Haute, Indiana.
Lately, I have been asked by friends and family, “What can I do to help you?”
I will share one tip that almost every special needs family needs. I would even go out on a limb and say all special needs families need–prayer. Specifically prayers for sleep. Prayers that all the children in the home sleep through a full eight to ten hours. Prayers that the parents sleep through the night. Life is so much easier when we are all getting the correct amount of sleep. I know many families spend years with interrupted sleep patterns.
I know it may sound too simple, but believe me, it truly is a blessing.
A month after Tristan was placed in our family, we had early intervention therapists come to our home. Susan was Tristan’s developmental therapist. She came to our home weekly for two years. Susan and I spent a lot of time together. I clearly remember one of our chats. She would gently encourage me by saying, “ALL children need to do chores. A child needs to feel like part of the family. Special needs children must do chores.”
If there were one area of parenting I could skip, it would be immunizations. Just the thought of Tristan getting shots causes me great anxiety. One reason being is I do not do well with needles. Another reason is that there is no way to explain to Tristan what is going to happen to him. He will understand to a degree but then will freak out. Tristan is developmentally around a 2 to 4 year old in a twelve year old body. Here is what we have learned along the way.
1. Bring an extra adult with. Brian and I both went and brought a friend,
2. Go to the health department- or another place other than your doctor office.
3 Alert receptionist/ staff to not say key words: nurse, doctor, shot
These could trigger the child’s anxiety. It has taken us a long time to figure this out.
4. Ask the nurse to get shots ready and do not prep in front of child. Explain to the nurse your child has anxiety so do everything FAST. Explain to the nurse you have enough adults to assist. We explained his special needs and took a few minutes to talk to our nurse. Tristan did not go back until everything was ready.
5. We had Tristan sit on Brian’s lap in a chair. The extra adult and I were ready to hold down Tristan if needed .
Tristan’s two shots were given so fast that he didn’t really have time to re-act.
Let me just say that I sweated over this for a very long time. I can not believe how smooth the process went. I kept waiting for Tristan to really get mad. He did not. We did take him out to eat at his favorite fast food restaurant.
Do you have any tips to share on this topic?
Hope this encourages you as you prepare for the next school year!