WE Will Do This

I seem to be finding my writing inspiration from fellow blogger's lately, I can't help it. What gave me more inspiration for today's post was receiving an email yesterday for participation in a study, it goes a little something like this....

"My name is Ann Liesen and I am a Doctoral Candidate at Oakland University in the School of Education, Department of Counseling.  I am conducting a dissertation study examining the relationship between parent’s perceived stress and quality of life satisfaction when raising a child with ASD.  I am also exploring coping and social support conditions that influence this relationship."

I will be participating in this survey and BE HONEST with myself and with Ms. Liesen.

There are so many times our marriage is tested. As I was reading my blog list for the day I was reassured that Amos and I are not the only ones. My Autism Street Neighbor had a post today titled "We are in this Together." I read this, I cried, I laughed and I could TOTALLY relate. Sure Amos and I did not expect to raising a special child with needs, we did not expect to have our child in  therapy since he was 2 years old, or did we ever expect we needed to learn to BE PATIENT. Patience was never either of our best qualities, and we still have a ways to go I am not going to lie. But we are going to do this. We will get through this and enjoy eachother and our babies.

There are many battles that we have to fight and choose which of those is worth the fight. One of the more difficult things is how do you parent a child that is typically developed vs. one who isn't? How do you explain to your 5 year old that is OK for his brother to insist on going to Monster Jam every time we get in the car and to keep insisting and yelling and screaming if we make a wrong turn towards Tingly Coliseum? We cannot just ask him to quite down or explain to him where we are going and everything be ok. How do we explain to Degan that the monster truck he was given on his birthday has become this week/weeks obsession for his little brother? How do we give Degan, Prestyn, and Cruz the same amount of attention? How do we teach Cruz how to share when his older brother doesn't understand the concept? How do we show Cruz that  Prestyn would rather play alone? Aren't big brothers supposed to play together?

Our parenting is questioned each and every day. How do I convince Amos when it comes to Prestyn, when we escalate the discipline we are escalating the problem ? How do I help him understand that while time-out may work for Degan it doesn't for Prestyn.

It is things like this that put A LOT of PRESSURE and STRAIN on our relationship.

Amos and I  have learned to deal and handle A LOT in just one year, I am actully really proud of us! One thing we have learned to accept is for a little man to be in our bed 6 out of 7 nights. Our boys were never co-sleepers, it was always better for us all to each sleep in our own beds. Amos and I were able to spend our time next to each other in bed, talking and just enjoying each others company. Within the past year Prestyn has needed us to go to sleep. He needs some deep pressure, some tickling and rubbing on his back. There are times when he is not in our bed that I will wake up and it be 2 a.m. and he is still not asleep. The minute I walk him to our room and lay him down with us and apply some pressure to my hold he is fast asleep. We understand that is something Prestyn needs regardless of how many times we are kicked, rolled over onto a monster truck or woken up before the sun comes up.  

Amos and I want to be the best parents possible to our children, all 3 of them; as well as wanting to  maintain a healthy loving relationship. I am not going to sugar coat it,  its hard and I am sure for both of us there are times when we don't think we can do it......then we are reminded that through thick and thin, through sickness and health...WE WILL MAKE IT!

A day off.....

I woke up usual morning routine: sneak out of bed so Prestyn doesn't hear me try to sneak by Cruz's room so he doesn't see me and scream and wake the rest of he crew, and plop on the couch and plug in. Check my email, check facebook and just enjoy a quite morning. That's when I see a blog post by a friend Jessica over here. I love reading her funny accounts of life as we know it. However this morning I had a completely different feeling. I read it knowing exactly who she was referring to when she said Summer. You see we all went to ENMU, a place I made so many great memories and some that I would like to never think about again! But anyhow, some of those great memories were made with Jessica and Summer, and for those I will forever be grateful. I have kept in touch with Jessica via Facebook and blogging, and as for Summer our lives paths had not crossed again, until now. I believe everything happens for a reason and Jessica posted about Summer and shared her blog because I needed to put some things into perspective. And that I have done. Today when I hear mom mom momma mom mom mom mom mom mom momma X's 20, I will take a deep breath and be grateful that I have my three boys all healthy and all able to call me mom. That they all woke up and need me.I needed to be reminded that we are all just on loan from the Lord and when he decides he needs us with him in Heaven he will come calling.
Today, I will stop and think of Summer and her angel baby Kelsie and be praying for this AMAZING mommy. I ask that you do the same. I can not imagine the pain the hurt and suffering one must go through after loosing their baby. Maybe if we all cry a little bit for her it will lessen the pain give her more strength and lessen her load, just maybe.I encourage you to read Summer's Blog  and I hope it can do to you what it has done for me. Sometimes we have to be reminded , people are suffering they are hurting, its not always about me,  me, me. Sometimes we have to be reminded our lives battles are nothing compared to others.
Summer, as hard as it may be to wake up to function everyday I know you find reassurance in knowing that you have your baby girl watching over you everyday, waking up to the Lord everyday right by her side, you are one lucky momma! She has the best seat in the house.

HOPE

Last week I had the opportunity to hear 3 AMAZING Autism experts share their knowledge with engaged audiences. Last Wednesday Dr. Bennett Leventhal gave a presentation on Autism Spectrum Disorders. He was brought in by UNM Department of Psychology. It was kind of an Autism 101. The audience was counselors, educators and some parents. I can take Autism 101 a million times and still learn something new. One thing he said that brought tears of happiness to my eyes was what he works on first with new clients. He teaches them "I love you mommy and I love you daddy." He said even though they may not know the meaning behind it, it is just what the parents of a just diagnosed Autistic child need to hear. I could not agree more! Dr. Leventhal’s lecture is online! So if you know of someone who would benefit, or would simply like to watch it yourself, go here: http://hsc.unm.edu/som/psychiatry/IDEAS/

On Friday I went to a daylong seminar at Sandia Casino that showcased Dr. Jed Baker and Temple Grandin. I went as part of a group with Shining Stars Preschool. Some educators and parents. That day went by so fast and I just wish it would have never ended. Dr. Baker spoke most of the day and offered some great tips, advice and wisdom. The very first thing he said was we can never lose HOPE. HOPE is what will get parents, teachers, therapists, and families through the journey. He spoke a lot about his book, No More Meltdowns, and talked about the importance of positive discipline. He said that the more frustrated and angry we get the worse the meltdown. He talked about redirection, humor and other ways to deal with a situation. I bought his book and Amos and I have been trying to read it between diapers, baths and bedtime. Dr. Baker is from New Jersey and is a consultant to schools and takes patients as well. I am so pleased that speakers of his caliber are being brought to NM to educate us.

Over the last few days I have tried some of his suggested techniques and it is amazing what they have done. Yes they require A LOT of PATIENCE, but they work. Prestyn has a very hard time with the word WAIT, Dr. Baker addressed that. To an autistic child the word wait is not an acceptable. They associate that word with NO. One of the best ways to help them understand is by using a timer. Start off slow with 10 seconds then build it up. There is nothing like just getting in the car and having a 4 year old yell that he wants gum and continue to ask until he gets it. And not only does he want 1 piece of gum but 2, and he wants to take the wrapper off himself, and then hand the wrapper to you while you are driving and he is not satisfied until all 3 of those actions are done and in that order. This is something that we are going to work on with Prestyn over the next few weeks.

Temple Grandin spoke for about 2 hours and as usual was so inspirational. I have heard her speak before and just as I expected was off the top. She was hanging out in the lobby prior to her presentation and I got her to sign Dr. Bakers book. She makes no eye contact and is very down to business. She showed very little emotion and could come across as rude if you did not know her. She is absolutely amazing and cares so much about Early Intervention. She wants to see every Autistic individual learn how to live on their own and amount to something. Anything, she knows and understands their abilities and encourages parents, teachers, therapists to use child’s strengths to help them develop.

All in all it was a great week! Now to take what I learned and implement as much as I can into the day to day life of The Baca's!