10 Things I Learned From Temple Grandin: Part One

 

                                     On Saturday I had the privilege of attending the Region Ten 2016 Autism Conference with keynote speaker Dr. Temple Grandin in Charlottesville, VA. I cannot tell you enough how much I learned both from Dr. Grandin as well as at the workshops that were offered. There was so much information that I am still trying to process.  I have to say though that I learned most from Dr. Grandin herself! For those who do not know her background she is now the most accomplished and well-known adult with autism in the world!  Her story was told in the movie "Temple Grandin" which told the story of all her struggles, challenges and successes as one who is living with autism. Her story brings hope and understanding to all those who are affected by Autism in some way. I would encouraged all to watch this movie....especially those who are affected by Autism in some way. So, on to the list of things that I learned from Temple Grandin. Here are the first FIVE:

1. Statistics:  1 in 68 are diagnosed with Autism and 1 in 42 boys are diagnosed with Autism. Boys are FIVE times more likely to be diagnosed with Autism. There are currently 5 million people who have been diagnosed with Autism.

2. Teachable Moments: Absolutely NO YELLING!!!  Instead of saying "No" CALMLY give them instruction and instead tell them what they should be doing. Dr. Grandin explained that when she was little whenever she made social or manners mistake her mother never yelled "NO" or said "Stop It" but instead she calmly gave her the instruction of what she SHOULD do. She believes that there should be more emphasis on what children do right instead of concentrating on what they do/did wrong. This was beautifully portrayed in the movie "Temple Grandin". Watching how her mother handled these situations was such a great "teachable moment" for me as I learn to parent David. Here are some of her examples:
      If I twirled my fork around above my head, she said, “Put it on your plate.”

If I ate mashed potatoes with my fingers, she said, “Use the fork.”

If I touched merchandise in a store, she said, “Only touch the things you are going to buy.”

If I forgot to say “thank you” she would give me a cue and say, “You forgot to say pause.”

3. Discipline: Consistency, consistency, consistency. There needs to be the same consequence with the same rule. If the child throws a tantrum the discipline might be no tv for the night. If that is the established rule there cannot be any change to the consequence. This needs to happen both at school and at home. Never threaten a punishment when a child is in the middle of an over sensory meltdown. It will NOT work!!! Don't give the child the opportunity to manipulate between the parents and teachers at school. Teachers and parents need to work together to make sure there is consistency and the child understands the rules and the consequences for each rule clearly. There is stability in that. There is comfort in that. When changes occur without warning then that is when the challenging behavior/meltdowns occur.

4. Common Heath Issues: People who are on the spectrum are more likely to have stomach issues, autoimmune issues, hearing loss and panic attacks!  When SEVERE behavioral problems occur in non-verbal individuals Dr. Grandin encourages parents to inquire whether these medical issues may be happening. She also says that Acid Reflux heartburn is the most common cause of severe behavioral issues even though that may not appear to be the obvious cause. She also stressed constipation, urinary tract infections, yeast infections, ear infections, bad tooth and the stomach bug or ulcers. All of these can bring about extreme sensory issues that lead to severe behavioral problems for non-verbal individuals.

5. Fear: Fear is the main emotion in Autism. The amygdala is the fear center of the brain. It is three times larger in the brain of the individual who has Autism. Anxiety is a daily battle. Dr. Grandin uses low doses of antidepressants that have controlled her anxiety. If someone has too high of a dose of anti depressant medication they can have insomnia and agitation which is worse. Another thing that helped her fight through anxiety was hard physical work and exercise. Should you want to learn more about medical treatments she recommended reading her books "Thinking In Pictures" and "The Way I See It".  She wrote chapters on this issue that gives greater detail for persons and family members affected by Autism.

More to come..........    :) 

EDCD Waivers and More.....

                                    The last week has definitely been interesting. In my last post I shared about the frustration parents can experience when trying to get additional assistance for their children who have special needs. I thought I would share a bit more about what opportunities may be available to these children. Although I am definitely not an expert in such things I wanted to share my experience with you in hopes to educate and perhaps encourage others on this journey. First, let me share about how I got to this point and how the Lord directed me to those who helped me with this process.
                                   Earlier this year I was praying for direction from the Lord as to how I might be able to apply for what is called an EDCD waiver. There are waivers that are available to children/adults who have all sorts of special needs that are causing developmental delays of any severity or kind. These are not just limited to Autism...this can be for ANY developmental/ntellectual disorder that has been diagnosed by a physician. These waivers (there are several different kinds) will cover ALL therapies, testing and additional needs that the children/adults will need. Should the child/adult need a therapy dog for example this will assist in providing that as well as other medical aids.They also provide parents/caregivers with the ability to hire someone to help assist their children/adult with any need they have as well as provide a great amount of respite for families who are in need of it.  When one is approved for this waiver they are automatically eligible for Medicaid which covers all of the therapy/doctors. For families/caregivers and the child/adult this is truly life changing! There is so much worry over finances that it is a huge weight off the shoulders of families knowing that the child/adult is able to receive all that is available to them. Some of these therapies, like ABA- Applied Behavioral Analysis- can be thousands of dollars even after insurance and this waiver covers it all without any out of pocket expense. ABA is actually the most successful therapy for children/adults with Autism. This can be truly exciting for all!
                               So, knowing all these things I struggled as to how I could apply for this for David. I had tried a few years back all on my own and it was a truly awful experience. As I look back it was because I had NO CLUE what I was doing. I did it all on my own and didn't have anyone to help me. As I prayed the Lord answered my prayer in such an awesome way and in HIS perfect timing. One evening a very dear friend....you know who you are.... invited me to a dinner to hear a doctor that she had been going to. I was looking for one and she highly recommended him to me. It was free food a great restaurant and it was an opportunity to have a girls night and spend some time with her so I decided to attend with her. Well, at the end of the evening there was a sweet lady there that happened to work for a local organization that provides assistance to children/adults with special needs and behavioral issues of any kind. They provide caseworkers as well who assist in the process of helping clients find the opportunities available to them. She took the time to listen for 30 minutes and asked questions about David and then gave me the name and telephone number of the director of the organization. I called him the next day and within 24 hours David had a caseworker! It was that quick! He was quickly approved for a grant which covered all the cost of the caseworker and she has been a HUGE blessing from the Lord. I was so very excited and grateful to be able to start the process again!
                            So, for the last 6 months she and I have studied the waiver eligibility requirements backwards and forwards making sure I understood every question that may be asked of me. We practiced answering the questions and she coached me on how to best fight for David in helping them understand how he is eligible for the waiver. Part of this process what talking to his doctors and therapists and asking them to write letters showing his medical diagnosis and how these therapies will help him continue to develop. One of the letters was from his pediatrician showing his diagnosis and how due to his feeding/sensory issues should he not receive more intensive therapy he could be at risk for nutritional developmental delay since he is small for his age in weight. The first thing you want to show is that the child/adult has a medical issue or developmental delay is causing a medical issue. So, we visited all his doctors and therapists and were able to show these letters to the nurse who did the screening. I prayed over each letter and I prayed for guidance in answering all the questions asked of me and I tried to just keep my eye focused on the opportunity that Jesus had provided us and lay it in His hands.
                            If you read my last posting you will probably remember that the meeting was so frustrating and exhausting I walked away from it convinced that there was no way we were going to get approved. Well, by the Lord's grace and goodness HE provided and we were approved!!!!  This is truly life changing for us! I am soooo very thankful! The Lord has also provided the people that we are able to provide a job for that are sooo very good with David and understand his needs. He will be able to receive ABA as well as additional therapies for eating/speech as well. This could not happen without this waiver and as a bonus Mom and Dad can use the respite hours to go on dates! That is just the icing on the cake!  :)  The Lord has been so faithful and He is teaching me daily to rely on Him and surrender David and his future to HIM!
                           I would give those who are in the process of searching out waivers this advice... One : give it to JESUS! SEEK HIS guidance and direction. Look for these opportunities. Second: Get your child/adult a caseworker to walk you through this process. DO NOT DO THIS ALONE!!!!  Three: DONT GIVE UP!!!  Seek friends who have been through it and take their advice. Get wisdom from others. Just keep going and don't give up!!!  It WILL happen!!! Go to support groups and learn from other parents. DONT GIVE UP!!!!  PRAY! SEEK! PRAY!!!!!  I hope this has been an encouragement to you. God bless you abundantly as you seek Jesus along this journey! 
                                  

Pray. Pray. Pray. Surrender. Surrender. Surrender.

                                          Being a special needs Mom can be full of uphill battles. You prepare for months for meetings and things that you try to get for your child that you believe in your heart that they need. You go to battle for your kid. You are their greatest advocate. You are their voice. You see opportunities for them that would help them grow and bring them to their fullest potential. You talk to your friends who have walked through this process and have been successful. You meet with doctors and caseworkers to prepare for the moment you have to fight for your kid. Each one is a part of your child's team because each one cares about their success as much as you do. You reach for things that you feel are so close to your grasp and yet you cant quite do it. It is as if someone is holding that thing right in front of you and you are reaching for it as far as you can and they keep walking away right when you think you have a hold of it. Then frustration sets in. It can be so exhausting. That is how it feels sometimes to walk this journey. It is an uphill journey full of ups and downs and roller coasters and you hang on for dear life.
                                            However, I have learned that nothing can be done apart from prayer and leaning on the Lord. Nothing can be done but to surrender. Pray. Pray. Pray. Surrender. Surrender. Surrender. Those are the biggest and sometimes the hardest things to do. When your heart just wants to scream for someone to say that they agree with the needs of your child you don't because you know that JESUS is the ultimate provider. You see the need and you bring it to Him. He promises to provide. BUT, He does not always provide in the way that you see or pray for. One thing that I have learned as I have battled the last two years for David is that I am NOT in charge. Jesus is in charge. He knows all that David needs. He knows all that I need. He knows it all. He is the parade Master that sees all the details from the beginning to the end. All that He asks and requires me to do is to surrender and trust Him. It is His will that I pray for. It is for His glory that I surrender. It is for His glory that I trust Him. It is for His glory that I continue to walk this road seeking Him, leaning on Him and rejoicing in Him no matter the circumstances or outcome.
                                         We had a huge meeting for David where we applied for a waiver that would provide for all therapies that specialists and doctors have said that he needs. It would also provide for needs outside of therapy as well. The meeting was a bit discouraging and at this time my gut says we are not approved for it. However, we haven't yet received a solid no. We will know within the next few weeks. Although I know we will probably not receive it I trust that the Lord could still move while the departments review the application and interview. So, I continue to pray. I continue to trust. I continue to praise the Lord even when I acknowledge that the outcome may not be what we desired. He is sovereign and He knows what is best. My heart is determined to keep rejoicing and praising Him. In Him I find my joy in the midst of struggles and disappointments that sometimes arise. In my life I have had to learn the hard lessons of praying for things, holding on to them thinking that they were the best choices even when I saw the doors closing. In those times the Lord allowed for these things to happen in my selfishness and not seeking Him and trusting Him only for me to realize that He knew what was best. I was miserable in those situations and learned very quickly that His plans are far greater than mine. What we may think are the best plans may be disaster. Jesus tells us that His ways are way higher than our ways. We need to trust Him. We need to pray "Your will be done"!  We need to have our mind set on HIS will and seek it with an attitude of "whatever is glorifying to You Jesus is what I desire". Whatever is not let it not come to pass. So I sit here surrendering my desires for His. May He be glorified in all that He leads us to. I pray that you have that desire as well. Pray. Pray. Pray. Surrender. Surrender. Surrender. Leave it at His throne and rejoice in Him knowing His ways are far greater! 

It's NOT All Good BUT Jesus IS

      The last two weeks have been a blur. So many major things going on and lots of thinking about this journey. Lately I have been struggling. This is just honesty people. A few weeks ago we met with David's teachers just to get an update on how he has been doing this year. For the most part he has been doing wonderfully! We all agree though that the best thing for David right now is to repeat the 3 year old class again. I had already been thinking this was a good idea so that was no big deal. David is nowhere near ready for the 4 year old class. He is currently probably at 2 years old developmentally in most areas. Generally speaking that is okay. However, lately I have been so tired.
           I have been noticing how different David is. The older he gets the more his differences become clear. I am so proud of my son. He is truly the biggest blessing Brian and I have been able to receive. Sometimes though this journey is so tiring. I would not take back any part of David. Autism is part of who he is. I would not want to change who he is in any way. However, I would give so much for him to not have to struggle with all these delays. One of the things that I have not thought about lately and have been successful in ignoring is speech. I have begun to realize that I am still in the grieving process of wanting to be able to carry on a conversation with my son and not be able to. My heart has been hurting so much in regards to that and I have not allowed myself to acknowledge that and it seems like the waves are hitting me again. I refuse to let myself succumb to the waves but instead choose to acknowledge to myself and Jesus how much my heart is hurting.
        I cannot carry on a conversation with my son. Most moms can ask their kids about how their day was and it leads up to a long conversation with laughter and hugs and getting to know their child and all that they think and feel about things. They get to hear their children sing, say silly things, hear them say I love you and know when their child is in pain. David cannot tell me those things and I cannot ask him if his tummy hurts or if he has a headache. He cannot tell me what he wants most of the time for the important things. I just want to have a conversation with my son. I just want to know what is inside his mind, when he is hurting, what makes him happy. I want to hear him say no. I even want the blessing of hearing my child complain. I know many of you are saying I am soooooo lucky that I don’t have to hear no or hear complaints. But, I have to say I would give ANYTHING to hear David complain. I would give ANYTHING to hear him say no. I would give ANYTHING to hear him tell me he is sad or in pain. It hurts my heart that I don’t know these things and I cannot soothe whatever is bothering him because I can’t tell. I am his Mother. It is my job as his Mom to be able to provide that comfort and encouragement. It is difficult to let go of that and fight the feelings of false guilt. It is all part of this journey. My heart just aches!!!
          The scariest part of his speech delay is David cannot tell me or any other person his name. He knows and responds to it but if someone were to ask him his name he cannot tell them. I don’t think he comprehends how old he is. He cannot tell you his age. He doesn’t know that. If he does know he cannot tell you that. This truly is scary in case he ever were to wander off and get lost. He would not be able to communicate that. It is something that I never thought about until now and it gives me the chills. These things are a safety concern. I have been working on this over and over again with him lately. I have been asking him almost on a daily basis what his name is and telling him what his name is over and over again. The only thing I can do is continue to pray that the Lord would give him the ability to know and say his name and age. I just have to give it all to Jesus ad trust Him to do that and to keep David safe.
            Autism is truly stretching me in soooo many ways. It stretches my faith and forces me to keep seeking Jesus. It keeps my focus on the Lord. It teaches me to be real with the Lord and not be afraid to tell Him and bare all my feelings and lay them at His feet. The other day I said to a friend after sharing all that is going on I said "but it's all good". My friend immediately said "No. It's not. Don’t dismiss your feelings." It is easy for me to do that. "It’s all good" seems to be something that I say a lot. I found myself realizing that it was getting in the way of me being real with my feelings and being real with Jesus. Crying out to Him and asking Him to comfort me, give me strength, calm my fears, give me peace and helping me to see His purpose in all of this. I am choosing to say to the Lord that my heart hurts....it's not all good...I feel weary. I know in my heart that His main purpose for this journey is to use David and Autism to bring glory to Him in the journey...to glorify Him in being real, honest, trusting and giving praise to Him in each struggle. Choosing joy in the struggle. Choosing joy in knowing that Jesus is sovereign, He is good. He is faithful. He is all that I need. Knowing all these things makes it all good even when I don’t feel it.

                                               

Hi Ho Hi Ho It's Back To Therapy We Go!

                                                    David has been back in therapy since September and we are soooo very happy! We took a long break from it for financial reasons and yet as I look back it was so needed. I didn't realize until we had to take a break how exhausted I was. I was sooo drained and exhausted from trying to get David to eat more foods. We were both getting so tired. I think parents aren't the only ones that get tired. The kids get tired too. David may have not been able to verbally communicate that to me but I see that now. We were both so exhausted from trying to work so hard. I began to really hate meals. I began to dread it again and my patience was definitely on its way out. I had absolutely no motivation and I was drained. I didn't have anything left in me. I could tell David was tired too because he started to get more frustrated than normal. He cried more and his fits began to worsen. It felt at times we were at the beginning when it came to us both hating meal time. I felt guilty at the time thinking I was depriving my son from what was needed to improve. At the time I didn’t realize that a break for both of us would help a great deal when we were ready to start again. We had about a 3 month break and I am so glad.
                                                                     The Lord in his timing provided an anonymous gift from someone who called his therapist and paid for his bill. I cried that day. I was sooo very thankful and just could not believe that we were able to start back up. I knew that we were ready to start back up and the Lord knew that it would be such an encouragement to us. I was in awe of His faithfulness and his love towards David and us. I knew from that moment that this would be a moment that would continue to remind me that the Lord will ALWAYS provide all that is needed in HIS timing. He is the One who is the Provider and I am so grateful!
                                                                When we first brought David to Scott it took him quite a while to get him to accept his new therapist. He cried most of the sessions. It took a while before Scott was able to really be able to figure out how to best help him and where to pick up from where his other therapists left off. David would just cry and get mad and then try to get my attention. Then Brian would also bring him and still nothing was really progressing. It wasn’t because his therapist wasn’t doing a good job...David just wasn’t accepting it really well. After we took the break and brought David back it was like night and day!!!!
                                                                One encouraging thing was David was FINALLY eating a first completely solid not processed food....Green Beans. I no longer had to mash them or process them. He ate them up almost right after we started back. After TWO LONG years the boy was finally eating a food I didn’t have to process. I was overjoyed! Praise the Lord this has not changed at all! It has been consistent! When we started back to therapy in September I set a goal for David and quite frankly, for myself. My goal is for David to eat 4 different foods that do not need processed or mushed. I asked his therapist if this was an attainable goal and he seemed to think it was. Some of you may be reading this and thinking that sounds a bit strange. However, it took TWO years to get him to eat a solid whole food so in my mind that seemed like a lofty goal.
                                                             Well, my son amazes me sometimes. About a month ago we introduced David to scalloped potatoes just to see what he would do. I thought it was not going to be successful. We had been trying other foods and nothing was working. We were trying to at least see what he would be willing to touch not necessarily put in his mouth right away. Normally, it takes a few weeks to get him used to playing with a new food. Well, we gave him the scalloped potatoes and he played with them right away....mashing them and tossing them back and forth between Scott and me. It was soooo great!!!! I was so thankful! It gave me such hope! Well about two or three weeks later he actually put them in his mouth. He even said "I can eat it". It was one of the best days I had had in a very long time! Then more changes came.

To be continued......... :)