The day I found out I was pregnant; I cried. It was not something I had planned at the age of 40! My oldest was 20 and my youngest 10….what was I going to do? Others told me it would be easy, they told me he would be the joy of our family and they told me I would be more laid back. Well, it wasn’t easy, I wasn’t more laid back but one thing I can say is he is the JOY of our family! Motherhood isn’t easy. As a mom you are exhausted, you go on little to no sleep but somehow you still have the energy to keep doing what your family needs you to do. I wouldn’t trade all of the sleepless nights for a second.
Jake came into our lives on February 4, 2009. I had never been more ready to have a baby. His pregnancy was extremely tiring for me. During my last trimester, every night without fail, he would start moving around at 6 p.m. He was a big boy and it hurt! I remember my oldest coming home from college just about every weekend as we got closer to Jake’s due date. One night we were watching TV and Jake started doing his karate moves. I was in so much pain and there was nothing I could do about it. Seriously, it was worse than labor. Jake would punch, kick and move around in that tight little space and I thought he was going to punch through my stomach all on his own. When I went into labor I was thrilled because I knew I could have an epidural and the pain that Jake put me through every night for months would end!
When Jake was born he was 10 pounds and 3 ounces. I knew he was going to be a big baby but had no idea he would be this big. He looked perfect; he was perfect. He was adorable but something felt wrong. The doctor’s and nurses checked him out and told me he was perfect. When they placed him in my arms something was off; something was telling me he was different. He was so cute and sweet and on the exterior he seemed just time.
The first few months were SO hard! Jake would cry when held unless he had a bottle in his mouth. He cried in his bed, he cried when I rocked him; he seemed to cry nonstop! I thought I was doing something seriously wrong; I felt like I hadn’t been a mom before and this was all brand new to me. I had a really hard time because I felt like I had forgotten all the mom stuff I knew. Nothing I tried worked with Jake unless he was in his bouncy seat. I wanted to hold him; others wanted to hold him but Jake would cry. We thought he may be colicky so we changed his formula several times. We thought he might be allergic to milk so we switched him to soy. When I think back on the first several months of his life I don’t know how I did it all. Allie was finishing up elementary school, Anthony and Nathan were in college, I needed to go back to work but couldn’t and John was doing his best to help us all any way he could. It was a tough 6 months.
As Jake grew he met most of his milestones on time. He was walking by the time he turned one and seemed fine in most ways. But something kept nagging at me that something was wrong. At each doctor visit I would ask his pediatrician if Jake was okay. I told him something felt wrong and he would smile in the most sincere way and tell me Jake was perfect.
The only thing I could tell that was “wrong” with Jake was he wasn’t making any of the normal baby sounds. I mean he would coo and he would babble a little but he wouldn’t imitate us if we said da-da or ma-ma. He would stare at us blankly. At 16 months I decided to seek help. Fortunately a Facebook friend had posted how her daughter (who is a few months older than Jake) was about to start speech therapy. So I asked her how to go about getting an evaluation. I called our local early intervention services and set up a meeting. Jake had his initial evaluation and not only was he delayed in speech but was delayed in every other area as well.
I thought ‘okay, we will do whatever it is to get Jake where he needs to be’. We started speech therapy, developmental therapy and occupational therapy. Just about every morning of the week a therapist was at my home at 7:30 for an hour. Several months later I still had some concerns as Jake was doing well but still not progressing the way I thought he should. He loved his therapist’s but time after time Jake would cry when something new was introduced. He seemed scared. I looked into what some of the signs of autism were but didn’t really voice this to anyone.
When Jake turned two I met with Jake’s case worker and during this meeting she asked if I thought he might be autistic. My eyes filled with tears and I said that I did. We started the paperwork for getting an evaluation for autism. During this time we took Jake to more therapy at an autism treatment center where he would receive ABA therapy. Here I met the most wonderful staff and the BCBA that would be working with Jake couldn’t have been more perfect for Jake (and me).
Jake was diagnosed with Autism June 26, 2011. A day I will forever remember. Although I was the tiniest bit relieved to hear Jake’s diagnosis because it meant I wasn’t doing anything wrong; it was still so hard to hear that my child, this precious boy was indeed on the spectrum. I remember crying for a while and then called one of my wonderful therapist’s and asked her “now what?” Here we began intense therapy.
Jake was in therapy for 16 hours each week. When he wasn’t in therapy I worked with him using the tools my therapist’s gave me. Everything was work. We worked on his speech, holding a spoon, playing, walking, touching different textures. We would introduce new items, we would encourage appropriate behaviors. When I think back to this time it is hard to believe how intense our lives were. Although Jake was in therapy for 16 hours a week he was actually in therapy 24/7. We would take breaks but part of me felt like I couldn’t relax, I felt as if I wasn’t working with him I was going to fail him.
Early intervention has played a huge part in Jake’s progress. I am so thankful that I listened to my own instincts and made that initial phone call. As hard as it was hearing about all of his delays and even harder hearing he was autistic I knew finding out early would give us some leverage. From early on my goal for Jake was that he would be able to attend school in a typical setting. We reached that goal mid-way through kindergarten. With the help of a wonderful aide, Jake was able to remain in the kindergarten class full time. He had his struggles and we had some bumpy patches but overall he succeeded! Our goal going forward is that he will be able to go to school without an aide.
Currently Jake receives about 4 hours of therapy each week. He receives occupational therapy (OT), speech and is part of a social skills group that meets once a week. We still work with him on using his words versus crying, following directions and listening. Jake continues to have challenges processing too many words and some directions. He also needs assistance in social groups. But with a little time and help from his family and therapists, he will succeed here too.
This boy of mine ours simply amazing!! He is 6 1/2 and we learn something new about him daily. As his language develops we are finding out all of the information that has been stored in his brain. It is the best feeling in the world when he comes up to me and tells me something; anything that I had no clue he knew. I’ve asked him “how do you know this?” and his reply is usually “I just do.”
As I think back to those months of intense therapy I can’t help but be thankful. It was hard but all of the hard work Jake and the rest of us did is now paying off in spades. Jake loves school and does well academically. His social skills are improving as he learns how to interact with his peers. Jake is in a typical first grade classroom with a wonderful teacher. He has an aide that helps him throughout the day but with each day he is doing more on his own. The main struggle we have right now is handwriting. It is difficult for Jake to hold a pencil and to write more than a few words. This is something we work on daily and like all of the other obstacles we have faced over the past 6 years we will succeed here too!
Hope has been our word for a long time. There is always hope for Jake. Hope that he will continue to grow and become a contributing part of our society. Hope that one day he will go to college, hold a job and get married. Hope that he will have the determination to face any challenge and crush it just as he does now. Hope!
Joshua 1:9 (NIRV) has been our verse through this journey; “Here is what I am commanding you to do. Be strong and brave. Do not be afraid. Do not lose hope. I am the Lord your God. I will be with you everywhere you go.”