Autism As A Whole

Tones on Tuesday

What would you do if you could not provide your child with services because the services didn't exist? This is the life of the children in Uganda with Autism. Many of these children no longer have parents and are left to raise themselves and siblings. Autism Uganda works with community members and leaders to bring help to Uganda's autistic orphaned and desperate children.
 
Their mission is to bring a new hope to these children by helping to meet the increasingly high  numbers of Ugandan children with Autism. In order for these children to have a chance to do more with their lives than simply cling to life, they need the basic materials for education. Think of the little boy, Kalumba Mustafa, in the picture, he is only four years old and lives in the Johnson Orphanage School. They don't have parents who give them the hope, love and challenges that they need to succeed.






 Johnson Orphanage School has been successful in providing many of these tools for many children, but there are still many more that need  help. In the village of Bbira, the Center has put up a school house that serves both as classroom and shelter to over 150 Autistic children. Items from pencils to toothbrushes have been donated by many generous individuals and are being used right now to improve the lives of many children. 


Nevertheless, these children still need other important basic needs, such as clean drinking water and a blanket or a mat to sleep on. Recently, they had a water shortage and they do not have the funding to get piped water to the center. They need all the help they can get. If you cannot help financially then please tweet this. Maybe you could pick up an extra package of soap and ask friends to do the same. School supplies to mail to them. Every little bit counts and helps. 


You can help provide these children with a place to sleep, a well from which to drink and a book to read.  I hope that you can find it in your heart to spread this around and help these children in Uganda. Together, we can make a difference, one child at a time.

As I was watching the snow fall outside last night, I considered the prospective that the children may have yet another snow day today. This is concerning for many reasons. They have already used 5 snow days and we only have 6.  His mood reflects the routine change which makes him very difficult to handle, but most importantly, he regresses when there are major schedule changes such as no school.When I mentioned this to a loved one, they said, If he is regressing when he isn't in school then he must not be getting what he needs at home. I took this very offensive and while I do look at my parenting, and judge myself all the time, I also see how much I do for him.

I called the school yesterday and spoke to his Occupational therapist. On a positive note I did this because my son actually came home and told me about school. He told me that his OT made him fall when he was holding her hand. She stated that Charlie seemed to be very off. He was walking while holding her hand and just fell. He didn't trip, just fell. She said that he has seemed really weak lately and is having trouble with some simple exercises that he is used to doing. She also stated that when she mentioned it to his teacher she agreed. After discussing with his OT, I called his speech therapist and while she said that he has made tremendous progress, she also said that his low muscle tone is affecting him. He has trouble cutting an orange and sitting up in his seat.

I see these problems at home as well and over the last two weeks he has had a glazed look in his eyes. Almost like he is physically here but mentally he is in his own world. I really do try to interact with him and teach him. I work with him but if he is not receptive then I give it a break. I think that I am doing the right thing but I really do not know. Am I wrong for not doing therapy every second of our day? I really do try to do everything I need to do and I want to be perfect at it all, but I am not perfect. Another statement that was spoken was "How do you feel that someone else knows how to work with your son better than you?" This brought on the tears.

The statement made me think back a couple years when I couldn't reach him. When I did everything to try to make him look at me. When a hug was rare and he he couldn't speak. It was at this time that I worked with him constantly to try to help him. I asked for help that I guess in other's eyes I didn't need. I should have been able to teach my son. But, I really thought he hated me. He hated everyone. I couldn't hold him to feed him and he wouldn't coo at all. I got services when he was 7 months old. They continued till now and this child didn't speak until he was 3 years old. It hasn't been an easy road and I didn't sit back and push it off on someone else.

Children with Autism do regress. It isn't always a horrible thing, although it definitely feels like it at the time. They regress because of change in schedule and environment and sometimes they regress when they learn a new skill.
Yes, I take time to blog and I take time to interact with other parents. Do you blame me? It is not only my escape but also my way of learning more and teaching others. I can support parents that are in the same boat I was a year ago. I can figure out different methods to deal with certain situations. Mostly, I know I am not alone. I know that it is OK to feel overwhelmed and to speak it freely.  Am I wrong?? Again???

I have other children and as I have mentioned they don't get much of my time. I wish I could change that. Life with a child with special needs changes everything, but it will only affect your relationship if the parties involved allow it to. I think we all need recognition for the positive aspects we have. Stand behind me so if I fall you can catch me. I analyze myself enough and wonder all the time what I could do differently. Unless you can truly relate then don't judge it. It has been a hard winding road and there are times in which we walk backwards but we always get back on track.

Am I wrong for feeling hurt? How would you feel? I guess it doesn't really matter but I question my job everyday and when someone I love has such harsh judgement, I feel more uncertain. Truth is, I know I do my best and I know that I could not change the way it is with him. There is nothing I could have done to prepare for this.

This was amazing and definitely prompted a smile, and a chuckle. I hope you enjoy it as well.

 via Laughing Through Tears