Hi Friends – We’ve been moving along as gracefully as possible on this journey and I thought it was time for an update on Dean and his team.
Since Dean received his diagnosis of autism, speech and cognitive delays in July, we have been full steam ahead. Dean is now in a variety of therapies 5 days a week. Speech, OT, ABA and Head Start fill our days and evenings. The thing about these therapies is that it takes everyone in the family to succeed and all 4 of us are doing little and big things to support each other along the way. We believe in the therapy and Dean so much and it is encouraging to see some results early in the journey.
To name a few:
- He has spoken a few words at times. Mostly “Done” and “Out”. And I really feel like when you are holding him close and saying “I love you” he has a sing-song kind of way to say “I love you” right back. It is encouraging to hear from his team that he has a very good chance at speaking someday.
- During this journey I have learned that even if Dean isn’t “speaking” he is going to have other ways to communicate with us. He is learning some sign language and a communication system called PECS. He also has a way of leading us by the hand, going to a certain part of the house, making sounds and doing other things that help us understand what he wants and needs.
- He’s smart. Of course I say this with the bias of a parent but I really feel it. He listens to us, understands a lot of what is going on around him and he has a way of adapting that is pretty cool for such a little kid that isn’t even 2 yet.
- We are learning more and more that Dean excels physically. By that I mean that our boy can run, jump, dance along to music, climb, maintain his balance and explore like no other. It is nice to see him so comfortable in different environments and to physically explore his world.
- He’s breaking stereotypes, as many children with autism do. They make eye contact, are social, engage with others around them, try new foods, etc. We love talking to people and hearing them say “I didn’t know a child with autism could do that”. The opportunity to talk about autism and stereotypes is something I look forward to.
Along with success, we have our challenges too:
- Therapists and other people are in our house all the time. That’s really hard for me in particular. I really need time without other people around. I am very introspective and my thinking time just isn’t there right now. I am busy physically and mentally very often. With the help of my wife and some amazing friends, I am finding ways to adjust to this new normal.
- Duke is getting used to people coming over to work with Dean and not him. If you know Duke, you know that we have a very social kid on our hands. He loves guests and people in our home. It is hard for him to give Dean and his therapists space to work. He is getting more comfortable with it but it can be a challenge at times. We are doing our best to make sure we balance all of the attention and time with Dean by giving Duke his special time, too.
- Dean has a health issue that we continue to find out more about. The easiest way to explain it is to say that he has a cluster of abnormal veins in his upper leg/butt area. As he grows, this vein cluster will continue to grow and it has the potential of causing some issues. Right now he is fine and healthy and for that we are so grateful. He has a great team of doctors that will help us monitor his health. And of course he has Dr. Mom right here at home that keeps a close eye on her babies.
The love I have for my boys keeps me sane (mostly) and motivated (very) to do anything and everything I can to help them have the best lives possible. That love keeps me going during the toughest times. What an incredible feeling it is to experience this unending, unconditional love.
This is all very humbling and scary and amazing rolled into one. My wife is my rock. We talk through everything together and when we aren’t taking the best care of ourselves, we lift the other person up. I respect and love that woman like crazy and truly appreciate and adore her.
Thanks for loving all 4 of us so much. Having the support of our family and friends means the world to us. You guys are the best!
I have a friend that posted an article called 21 Ways Special Needs Mom Killing It at Motherhood. It was about the little things that you do and celebrate as a parent of a Special Needs child. Even the smallest measures of progress are celebrated around here. She posted an amazing picture of her daughter walking up steps, unassisted with the hashtag #SNMOMKILLINGIT and friends shared in celebrating this great accomplishment.
We have been celebrating a lot of progress around here for both of our boys. Duke has been expanding his vocabulary and is talking non-stop. He talks about shapes, numbers, whale sharks and Paw Patrol all of the time. And Dean has been finding new ways to communicate with us. Mostly through his own signs, sounds and expressions. He goes to certain places in the house when he wants specific things. He has a certain sound that he makes when he wants his water. He knows how to tell us when he is ready for bed each night. We celebrate both of our guys and their expanded communication tools. It is amazing to watch them grow and make this progress.
I hope that Jenn and I continue to be the Special Needs moms that kill it. We get so much strength from our boys and from each other. And from you. I do not know what we would do without our team of cheerleaders. THANK YOU!
We are gearing up for visitors, my plans for a trip to AZ for my 20th year high school reunion and lots of therapy for Dean. I swear if I wasn’t busy I’d probably lose my mind. Thank goodness life keeps blessing us for opportunities to stay busy and have fun. Our new normal is pretty good.
Telling Dean’s story doesn’t get easier for me…not yet. I had to share the news of his autism diagnosis with his “school” this morning. He goes to a preschool twice each week as a way to help his socialization. Even though he doesn’t interact with the kids in his class, he sees them and their behaviors and this is a positive experience for him.
In the next couple of months, Dean will begin receiving about 40 hours a week of different therapies – ABA (a behavior therapy), Occupational Therapy and Speech Therapy. There just aren’t enough hours in the day for Dean to attend his school right now. I know what you’re thinking and I am there with you…40 hours a week?!? That is a lot for anyone, especially for a toddler. But as we are learning, Early Intervention is priceless. Children learn 80% of all they will ever learn by the time they are 3 years old. We have a lot of work to do.
I worry about things in my control and things completely out of my control. Here is my current list:
- How is all of this time focused on Dean going to impact Duke?
- Lots of people will be coming through my house…that freaks me out a bit. We will have therapists here probably 6 days a week. What about our private/family time?
- Is Dean going to remain non-verbal? When will he talk?
- What else can we be doing for him that we aren’t already trying? Should he avoid gluten, dairy, casein, soy, additives, plastic, preservatives, food dye.
And then I spiral. Spiral into panic and worry. I can’t talk, can’t breathe, can’t move until I gather myself and do something productive for him. I read everything I can on autism, I talk to parents all day long, I call and email trying to get him consultations with the best doctors I can find, I move through the system to find out if we can get in a research study. This is my new normal.
The cherry on top for me right now is physical pain. I have a labral tear in my hip. It started as a dull ache and is getting worse. I start each day feeling ok but by the end of my day, I can barely walk. That isn’t going to work for a busy mom of two active boys. Taking pain medicine to get by isn’t really viable…I don’t want to feel groggy, especially when I am alone with my kids. And I can’t take most anti-inflammatories. Surgery seems to be the option but WHEN THE HELL AM I SUPPOSED TO HAVE TIME FOR THAT? Four weeks of no bending, lifting and little walking is part of a surgical recovery plan…you’ve got to be kidding me. So I drag my leg around and hope that some fairy comes along and waves their magic wand over my hip during the middle of the night. That could happen, right?
So here we are, in our new normal. It takes me longer to return a phone call or text, I am not the most pleasant wife to my Jenn, my level of patience fluctuates and sometimes I really wish all of my support people in Arizona were down the street here in California so we could have some more help. We won’t feel this way forever but that is how I feel today.
We’ve known for a while that Dean has autism. Even before we knew what to call it, I could tell something about our boy was different. My gut told me that Dean had some kind of struggle. I could see it in his beautiful brown eyes. They always tell you not to compare your children but with having two boys so close in age, it is impossible not to compare growth and milestones. Dean just did things very differently than Duke. Not better or worse, just very different. For a few months we called Dean “quirky” but as my research kicked into high gear, I knew that it was more than that. Jenn knew it was more than that.
Fast forward to July 15, 2015…we met with two doctors that specialize in treating autism – one is a developmental psychologist and the other is a developmental pediatrician. After observation, interviews and tests the doctors gave us their firm diagnosis. We have found out that Dean is considered severely autistic. On a scale of 1 to 3, he is currently rating a 3 – the most severe. He also has cognitive and speech delays that are severe.
Right now I feel that this fucking sucks. And let me feel this for a while. I have to. No one can tell us if our son will ever speak, read, drive a car. We do not know what his “normal” looks like and for me as a parent, that is terrifying. And sad. And overwhelming.
But this is all how I feel, right now…this is my today. I will not feel this way for long. A pity party is not something I throw myself often. Anyone that knows me can confidently say that any team I am on will come up with a solid plan for Dean. We will get him any therapy, resource and treatment that can help. Give me a challenge and I will meet it head on with all my energy. My sons are strong just like me. And my wife is amazing.
I am proud of us for listening to our gut instinct and getting Dean checked out. We have had so many people tell us that Dean doesn’t look autistic, that he is a boy and boys develop slower, that Dean smiles and autistic children can’t do that…you name it and we have heard it over the past few months. But Jenn and I stayed true to the course and we saw all of his evaluations through knowing that the answers wouldn’t be pretty but at least we would have some information to go on and then could begin to help our guy.
The bottom line is that both of my sons are loved and cherished beyond measure and their mommies will do anything for their health and happiness.
So here we go. Are you ready to join us?
The parks and farmers markets in our area are definitely two of our favorite things about Roseville. There are three parks and lots of open fields in our immediate neighborhood. It does get warm in the afternoons but the mornings and evenings are gorgeous and perfect for outdoor time.
Do you see a trend here? We give our boys two middle names so they get a nice, short first name.
Baby Boy Baumbach #2 will be Dean. We listen to his heart with the Doppler and love on him as much as we can while he’s in my belly. Duke loves to pull up my shirt and rub my belly…we think this is brotherly affection.
Jenn and I were talking the other day about the personality our sons will have. Duke is such a rowdy – he’s active from sun up to sun down, he’s very vocal and strong willed. Who knows what Dean will be like? He might just be calm and quiet. Wouldn’t that be ironic if Jenn gave birth to the rowdy son and I give birth to the calm and quiet one?
We love our Dean so much already. He will be here in November but to us he’s already been with us since February. It’s amazing how much you can bond with a person that you’ve never met. Our sweet Dean…such a blessing!
Duke has a cute little table in his room and a favorite new activity is hanging out at the table and looking through books. He loves his animal book and makes lots of sounds when turning the pages. Best of all, he sits still for a few minutes and Mommy doesn’t have to chase him around.
Hi Family & Friends –
Welcome to The4Baums.com – we decided to create a family site to keep in touch with people. We will post updates on our life here in Northern California, lots of pics of us and our boys and other random thoughts. Since we will have lots of personal stuff on here, we have made our site private so only invited readers can view it.