Grammie of a newly diagnosed 18 mo. old grandson. Trying to digest & also support his Mom, who is still devastated.

[dorotheadg]

[KickButtMama]

 Fist of all HUGS!! It is a challenging road to be sure. But it is also beautiful. I'm not sure the exact dx for your grand-baby. But my oldest, 10, has Aspergers, Sensory Processing Disorder and Pervasive Developmental Delay. Sure there are many frustrations - as IMO it's like learning a new language. He sees the world in a completely different way, and when he hits a road block I feel frustration that I haven't found the vocabulary necessary to help him through it. But he sees the world through such innocent eyes. How he sees and interacts with the world is truly beautiful. He only sees the good in others really - sure he'll misinterpret a lot, but for the most part he just loves life and the whole world. I stress that I have to be more protective of him than my neuro-typical child, because of that innocence, but it is beautiful to see none the less.

This is not a life sentence, your grand baby can still grow and develop a life of his own. You and your daughter are now his personal assistants - the hardest part is just finding the right situations and opportunities.

We are here for you and your daughter!!! HUGS!!!

Shannon

[crossnlilly]

You came to rhe right place. Everyone here is really caring and helpful. My prayers r with you. Everyone here knows how hard it is to hear those words. But i want to offer you and your daughter hope and help. I know when you first leave the doctors it feels hopeless and they dont offer much help. You guys r lucky you caught it early. The earlier the better. The good news is there are alot of things that can help. There r many different therapies. There is also alternative medicine. Any questions just let me know. My daughter is 4 and was diagnosed last year. She has made amazing progress. It is possible. Dont ever give up. Lots of hugs

[Apple1]

 

Hi and welcome to our group.  I have a little boy who is 5 with severe Autism.  It is a very long road, but one that truly tests your faith, and one that opens your eyes to how special our children are!  You sound like a wonderful grammie, looking into ways to help your family and grandson!  Like the other mom's mentioned above, there are so many ways now days to help children with Autism!!  They can get better through different types of therapy including Occupational therapy and speech therapy.  Also when they turn three, they are eligible to start special pre-school which helps so much with learning more skills.  Not only do therapies and schooling help, but also special diets...the GFCF (Gluten free, and casein free) which are proteins found in many things like breads, cheese, and milk often cause behavioral problems for our kids and cause there stomachs to hurt.  So many mom's will remove them and notice huge gains in eye contact, reduced crying, fits and melt downs, more language/babbling etc.  Wonderful group here on cafemom that talks about the diets and special doctors who treat our children (DAN doctors) is the biomed momma's group.  Sending big hugs to you and your family....it will start to get a little easier as you go.  xoxo

[Mommie2Bof3]

In my opinion you're doing the best thing ever for your daughter and grandson! Seeking support. Her also doing the best thing a mother can do, she was strong enough to get through his diagnosis at such a young age, which is important. I love how you care that much! My mother did as well when my son was diagnosed. Being a strong support to her will be the best thing ever, seeking any information for her will ease the pressure of being your grandson being dx. I know I'll never forget the appointment my mom came to with me and Remington, I was crying and she told me, "You aren't going to be alone, I will always do everything I can to help you." ie. Remi, Hubby and our other children. AND she has! I don't know what I would do without her!! When my son was diagnosed at 24m, I became VERY depressed. Being my third child I felt in my heart that my son was "different" from weeks after he was born, and not just colicky. Everyone, including my mother and husband, reassured me he was fine. My pedi and I were both concerned since 9m about him. He was too young to start thinking about a diagnosis of any type. Then t his 18m check she told me she couldn't diagnose him, but he had no doubt he needed to be seen concerning autistic traits. Then when the psychologist told us he had Autism (6m later) my world collapsed. Not forever :) If I didn't seek the support online and other people dealing with Autism in their lives, we would not be where we are today. My advice for your daughter and you, is never think about the upcoming "what ifs and what if nots". Instead think of the future as positive milestones that come to your grandson when they do, and be proud! My son will be three in less than a month and we just had our first annual meeting with the school district a couple months ago. We Discussed where we want him to be in another year, etc. and I hated it! It brought me right back to the day when we made our first plan, when they told me my son had autism. Then I remembered all the great accomplishments he has made and how rewarding this year has been! As mentioned above, I also encourage you to check into the special education program in your area. Most are free. There are grants and low monthly costs for medical assistance to those who financially wouldn't normally qualify because of their parents income but can because of a learning disability with need for therapy. My son has been receiving in home OT and speech therapy since he was 19m old, free through the district. He's also in clinic 2x a week since he was 24m old. The assistance TEFRA takes the bill after our regular insurance goes through, with a small monthly fee. Both have helped greatly and have been awesome support. Waiting lists can get crazy, so helping her get on them now might be helpful. If you or your daughter need someone to talk to, I would love lending my ear, it's nice to know you are not alone! It's no doubt an obstacle and life changing, but I would never change it for the world! Best of luck to you all! Xoxo

[Mommie2Bof3]

I was actually coming in the site to share my son singing his ABC's...he doesn't talk clearly very often, which is a huge improvement! He has a wonderful memory, and like a lot of kids with autism he learns through pictures. He can write all the letters and numbers and even ome words from memory. You can see a video of him singing his ABC's at http://www.youtube.com/watch?v=KIsRk94mAMU or search YouTube- Remington ABC's and I also have a couple videos of him at around 18m old that kind of shows how far he has come. There are many great stories, or progress videos on YouTube! I grew to love watching then about autism and also started wanting to share.

[stillstandin246]

 I want to say Bless You for coming here, seeking information and support for your daughter and your grandson.  I can say from experience that many of us don't have much support from family members.   Letting your daughter know you don't think she's crazy, exaggerating or making it up will be a huge help.  Get involved in a support group, you can go to Autism Society online and hopefully find a group near you.  I can say the biggest issue I deal with is having to convince everyone around me (my mother included) that my daughter needs the help she does so she is treated in the best way for her.  Your daughter is grieving for the child she was prepared for. To be honest, I still am and I am fully focused on the reality of our situation, and my daughter is 7.  Some days every interraction with her is difficult.  But with you supporting your daughter in a way that lets her know you understand what she deals with and are there to give her a break occasionally when she needs it, that will be the best thing you can do.  Make sure she hears you tell her that you understand, you know its hard for her and you will be here to help.  Again, bless you grammie!!

[ConnieHammer]

This is always difficult news to digest for all family members. The biggest hurdle for most parents is accepting the diagnosis - it is a shock to the system and takes a while to adjust to. One of the hurdles that often gets a parent stuck is dealing with feelings of grief and loss for the future they thought they were going to have. The sooner a parent works trough this the  quicker they will be able to move forward to help their child maximize his or her's greatest potential. The future won't necessarilly be worse, just different. I speak from experience in helping many parents through this.

Here is an article I wrote that might help, A Diagnosis of Autism: Making Adjustments to Manage Feelings of Loss and Grief

[dorotheadg]

Thanks to all who posted. We are going for his hearing test today. waiting on info setting up everything else. 

[MommyJanice44]

 There is always hope , My Kyle is 20 now ,Up until my son was the age 7 he was non verbal no words at all , we did the hearing test also that came back ok , Just wanted to send my care to you to let you no how far my Kyle has come in life , I never heard a sound out of my son until he started saying mama and Nana , now he is able to do almost everything I worried about for years , yes there is hope they can and do get better with time , therapies , patience , love , understanding , most of all the love from you both your little grand-baby is going to be alright ....Keep reaching out for support there are so many of us mom who no exactly how your feeling we have all been there felt & heard those words of autism with are own kiddo's . I too was devastated but now in my life with my son he is the biggest joy i wouldn't trade him or my life for anything different . My Kyle has the biggest heart out of anyone i have ever known on this earth , he loves love he loves to laugh he loves to give he loves to water the grass and make it green , it is not anything to be devastated about in time you will understand & realize what a gift you have in him .. Warrior mama for sure warrior Grammie too .  So many children are being diganosed right now the rates are sky rocketing .... Glad your hear so please keep us all posted on how she is doing also you hang in there too .... Its all going to be ok just takes time for her & you .. STAY STRONG sending my love and care .... 

[MommyJanice44]

 

Quoting Mommie2Bof3:

I was actually coming in the site to share my son singing his ABC's...he doesn't talk clearly very often, which is a huge improvement! He has a wonderful memory, and like a lot of kids with autism he learns through pictures. He can write all the letters and numbers and even ome words from memory. You can see a video of him singing his ABC's at http://www.youtube.com/watch?v=KIsRk94mAMU or search YouTube- Remington ABC's and I also have a couple videos of him at around 18m old that kind of shows how far he has come. There are many great stories, or progress videos on YouTube! I grew to love watching then about autism and also started wanting to share.

 That is wonderful your helping your little one with signing , I wanted to add too they are little genius', in there own way . My son has a clock in his head his memory is beyond belief .. Kyle can say the alphabet backwards wow huh , amazing kiddo's they all are . Just wanted to say good job mama on the videos' and seeing that there is growth , i will try to find the video of your little man . Thank you for your share . ALL OF US ARE IN THIS TOGETHER .