Autism?
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I have been waiting for several weeks, to write this. I wanted to get my thoughts together, to have everything make sense in my head, before writing about it. I feel like I have so much to say, but yet at the same time, I’m not sure what to say. I have all these overwhelming thoughts in my head and I’m still trying to figure out how to get them out and articulate them in a way I want everyone to understand.
I remember when I first was pregnant with Adam. It was several months after my miscarriage and I remember feeling so blessed to have a second chance to carry a baby. I prayed and told God that when this baby was born I would dedicate him to Him. I still pray every day that my son will accept Christ at a young age and will someday serve the Lord and do great things for Him. Nothing has changed in that aspect. My son, Adam is still God’s and God has a plan for him no matter what.
I also remember being worried and scared about the thought of our son having Down Syndrome or later getting Autism. I knew that no matter what I would still love him, but like any mother, I wanted my son to be healthy and live a full life. It was something I thought about often during my pregnancy.
Over the months since Adam has been born it seems that he has had increasingly more and more problems. It started out small at birth and as he has gotten older we have seen how he is a little different than other children in several aspects.
Adam receives therapy in 3 areas right now:
1. Feeding Therapy
Adam has an aversion to food. He cannot and will not eat certain textures and tastes. Every day is a struggle to try to get him to eat, whether it be just a few crackers or trying something new. At times I want to give up, it’s hard fighting with him every day, and it’s hard watching your child either eat nothing or not enough. (You can read more about Adam’s problems and therapy here: “My Little Boy is in Therapy.”)
2. Occupational Therapy
Adam has problems with sensory and feeling. He does not like certain textures such as grass, sand, and the feeling of tennis balls. He also is behind in several areas, and with this therapy they help him learn smaller movements such as putting together puzzles, stacking blocks, and putting things together.
3. Speech Therapy
This is our latest venture as he has just started. Adam can only say “mama” and “dada” and I have watched while all my friends enjoy their child’s first words and sounds and have been sad to hear the silence from Adam. It’s only been over the past several weeks that he has really started to babble.
We found out in his evaluation last week, that Adam is about 10 months behind as far as speech and comprehension. Comprehension meaning that he does not fully understand certain things. If I ask Adam to go pick up his cup, he just looks at me. If I say, “Adam wave bye bye!” he doesn’t understand. His comprehension is that of a 10 month old. When I heard this I was shocked and discouraged. I know that therapy will help him catch up, but I was overwhelmed.
Because of all these things, and because of some other things he is behind on according to the paperwork I filled out at his 18 month well-checkup, the doctor has referred us to a developmental pediatrician so that Adam can get tested for Autism. I found this out two weeks ago and since then I feel like my life has been turned upside down. I’ve been overwhelmed with all my thoughts, and even more overwhelmed with all his therapy visits as I am realizing this is becoming more serious.
And thus the deliberation began. Should I wait until my husband gets home? Should I take him to get tested now? The place is 3 hours away. I don’t want to go by myself. My husband should be there. We should be there together. But yet I can’t help but feel that we should do this now because if Adam does need help, then we should get this started as soon as possible. I prayed, and I talked to my husband a little about it best I could. We decided to go ahead and do this as soon as we could get an appointment.
According to the doctor this is just a precaution. It’s better to catch this now then several years down the road. Adam may be fine as far as the Autism, or he might be on the lower end of the scale.
Now I know that everyone has an opinion. I have gotten feedback from others telling me he is too young to be tested, or that he is fine, and from others telling me to do it now and don’t wait. But it all comes to how well I know my child. I see him every day and I know what he does and doesn’t do. I trust his pediatrician and I know they would not have us do this if it wasn’t important to do so.
And so the past few weeks have been crazy. I am overwhelmed with everything I have been given in all 3 of his therapy visits once a week. I have lists of stuff to work with him on, stuff that I should be doing, paperwork to read. It’s just too much for me. I am having a hard time dealing with all of it by myself.
On top of it all the Skype chats with my husband have not been enough and neither have the emails. Skype has decided not to work for more than 30 seconds at a time for the past several weeks, and email is just not cutting it. We don’t get phone calls either. How to you explain all of these things over email? How do you explain what is going on and what we are going to do, and at the same time assure that everything is going to be ok?
And in the back of my mind I can’t help but wonder if this is something I did? Did I do something during my pregnancy that caused him not to develop right? Have I not worked with him or introduced him to new foods, sights, and experiences enough? What if, what if, what if…
My son is such a happy boy. He makes me smile and laugh every day and I love seeing the world through his eyes because everything is new and exciting. I love him and that will never change. We will get through this. One day at a time.
*hugs* and prayers. I really struggle with the why and wonder if it is something we did to cause Drew’s Asperger’s. I think it is hard not to think that way. I think making the decision to take them to be tested can be so hard. It’s scary and you just don’t know how you are going to feel if they find something is not how it should be. Know that I am here if you ever need to talk. And know you guys are in my prayers.
Yes, I ask myself that all the time. Thank you so much Julie, I appreciate your friendship here and on Facebook! Will be praying for your son as well.
It can be so difficult dealing with children with different needs, not because they aren’t AMAZING children, but it is easy to see when they are falling behind and wish we could just fix their problems. I can’t say that I can relate in every aspect, but my son is currently in speech therapy. He is 2 and has NO words. None. {What I wouldn’t give to hear him say mama!} but I know with time, patience, and work he will get there. Hang in there! As for the testing, go with your mama gut. If you think it would be better to wait until your husband is home, then do that. In the end, you spend your time with Adam, you have to trust that you know what’s best for him and you! Good luck! {He is adorable, that smile makes me melt}
Yes, that is the one thing that gets me sometimes, is watching other kids and seeing how behind my baby is. He is still so special, to me, and I still love him, I just feel bad that he is not as far as some children are. I understand the speech thing at least a little. How long has your son been in speech? Adam just started a couple of weeks ago. Thanks for the advice and encouragement, I appreciate it!
Hi Kathryn,
Let me start off by just giving you a big virtual hug! I have been down the road you are on right now. My son also receives speech and occupational therapy. He was diagnosed with Autism last year while my husband was deployed. It has been one of the most painful experiences in my life. However, God continues to remind me that he has not forsaken me or my son. My son is making good progress with all of his therapies. I refuse to believe all the statistics for my son, for all things are possible and with God’s help, he can achieve great things. As for testing, I didn’t have my son tested until it was absolutely necessary for therapy purposes. Sometimes, insurance companies or states will not provide therapy unless there is an official diagnosis. Have you checked into the EFMP (Exceptional Family Member Program) at Robins? That might be a great resource for you. I will keep you in my prayers girl and if you ever want to chat, get with me on Facebook. đ
Tonya
Hi Tonya,
Thank you so much for your encouraging comments here and on Facebook. I was actually going to message you on Facebook, but I have just not had the chance yet. Thank you for sharing a little bit about your experience with me. It’s been so hard especially since my husband is gone, but the hardest has been all the things people say to me (without thinking). I did check into the EFMP per your suggestion. I had a meeting with a lady here on the base, but they said I can’t sign up for it until my husband is back, and that it would be best to wait to see what the testing says. He will be going march 19th and not sure how long it will take to find out after that. Thanks again, and I am sorry about your son, but I’m glad to here that the therapy is working. I am hoping since we got him in so early that it will help Adam too.
I am so sorry you are going through this. It has got to be so hard! Personally, I would not wait to get him tested. My understanding is the earlier they receive therapy, the better they do. Although I completely don’t blame you for not wanting to go through that without your husband.
Thank you. I did end up getting him an appointment. He will be going on march 19th. I think you are right and that is why the pediatrician wanted him to get tested now- better to get the help he needs rather than wait. Thank you for commenting I appreciate it.
oh sweet Kathryn, I have no advice, no, “words of wisdom” or opinion to share or anything, except to say
You are an amazing mama! The smiles on your little boy’s face speak! You are doing a great job!!! I would encourage you not to worry, but I know how easy it is to worry when it is our little one’s we are talking about!!! just remember GOD formed Him in your womb and created him exactly the way adam should be. and God has equipped you with the strength and patience and grace to be Adam’s mama, and He is always there with MORE when you need it! You are Adam’s mommy, Adam loves you and it is so obvious just from pictures how much love he feels from you, and THAT my friend is far more important than many other worries.
We will keep you and Adam and Jon in our prayers!! I know this must be difficult, but don’t doubt the amazing mother that you are!!! đ God chose YOU to be Adam’s mama, not any one else!!! đ what a privilege!!!
<3
Thanks Paula. I appreciate the encouragement. I try so hard, but sometimes I feel as though I don’t do enough. I’m so glad I have God to help me through this though. Thanks for the sweet reminders.
I wish I had words of wisdom for you. Just know that I am PRAYING for you, your son, your family. If you ever need to chat, let men now! HUGS!
Thanks Courtney, I appreciate that. I really do.
*hugs* We’ve been down this path before. I know the feeling of a heavy heart and the lost confusion. My son was diagnosed with autism by a pediatric psychologist at 3. Then at 5, we were told he wasn’t… to this day I’m still not sure what I should believe. Just know that God gave you your sweet little boy because you (and your husband) are who Adam needs. You are the perfect mother for him! I pray that you find your answers soon.
Wow I cannot believe that. I am so sorry, God must of had some kind of reason and maybe the help he got did help enough? Thank you for your encouragement I appreciate it.
I’m so sorry to hear that you guys are going through so much right now! I’ll be praying for you all, and I hope that you’re able to get answers and see some progress. Adam looks like such a little sweetheart, and I know that everything will work out. Lots of hugs!
Thanks Erika, sometimes it’s hard to see why we go through these things, but hopefully there is a light at the end of the tunnel. Thanks for the sweet comment!
You are such a good mama, you are doing all that you can and what is best for him. It’s so hard to know what to do at times when everyone puts their opinions in. You have to go with your gut feeling and you will do what is right. We had my son tested for a variety of things while my husband was deployed. So many people asked if the issues were a result of the deployment and he just needed his dad home. They also questioned my decision to have him tested while my husband was away, but I didn’t want to wait any longer. He needed the extra help and we are both glad that we didn’t wait. It was hard to do it without having my husband here for the support, but he gave me his full support as best he could. Skype was terrible for us and we only had email too, that makes it harder you’re right. I’ll be keeping you guys in my thoughts and prayers. He looks like such a sweet, happy little guy and he is adorable! *hugs*
Thank you so much. I have had so many people say things and it’s hard because they just don’t seem to understand. I’m sorry about your son, but I’m glad you were able to get him the help he needed. I made an appointment so my son will be seen and tested March 19th. I agree with what you said and decided it would be better to get him tested now. Thank you for your comment and encouragement I appreciate it.
Oh, Kathryn, my heart goes out to you. When my husband was deployed, Skype didn’t work very well for us either, so we ended up using gmail chat. I don’t know if you two have gmail accounts, but they are free, and you can video chat quite easily. Maybe this will work for you. Anyway, I know this is a very trying time for you, and God will sustain you, even if it feels like you’re drowning. Keep up the good work, and let us know how the tests turn out!
I didn’t know gmail had chat! We do have gmail accounts so I will have to look into that, thank you! Thank you for your comment and encouragement I appreciate it. He will be tested march 19th so I will defintiely keep everyone updated.
Kathryn,
I emailed you the other day about Valentine’s gifts and my son enlisting in the Air Force. When I read this blog today, I felt compelled to share something that has been tremendously helpful to me. I won’t bother you with the details, but we’ve faced many, many challenges with our son from the time he was very young. Stormie Omartian’s book, “The Power of a Praying Parent”, given to me by a friend, came to be my “centering” mechanism. The prayers in the book kept me calm and gave me hope that things would turn out well if I released my child into God’s hands. I won’t be surprised if you already have this book, but just in case you don’t, I know you’d find it incredibly comforting. I will keep your family in my prayers.
Thank you Stephanie! I have the Power of a Praying Wife book, but not the one for parents, I think I am going to have to get that one. Thank you for the suggestion and for your sweet comment, I appreciate it!
Praying for you and your family as this is coming at a very stressful time. God will carry you and your husband through this. He is so faithful. Our oldest (8yrs old) has Aspergers. There are resources available for us military families, but first you have to have a diagnosis. I would start the process now because there is some waiting involved. The earlier the diagnosis the better. Please free to email me. ((((HUGS))))
Thank you Katie I really appreciate your comment. I did decide to make him an appointment they didn’t have any until March 19th so that’s when we are going. I talked to someone on the base about it and the EFMP program so we may get into that as well. Thanks again so much it’s nice to know I’m not alone.