Children’s Therapy Connections – My Journey With Autism

Hi Everyone,
I am Kate and I am one of the owners of Children’s Therapy Connections and I am also the Mom of a three year old boy with Autism. This will be a blog where parents or friends of children with special needs can come to share our journey. Getting a diagnosis that your child has special needs is extremely difficult, together we can help each other through the ups and down’s of life with a special needs child. My first child was born three years ago and I remember when he was a newborn thinking that something was wrong. He had a difficult time nursing and within the first two months we had switched formulas 5 times. My guy had a hard time being cradled and did not like his head down (can anyone say sensory). I just kept trucking along thinking I was just being a nervous first time Mom and thought I was looking for problems. I noticed at around 4 months old that he had a hard time being in other people’s homes and actually made a joke that he has Aspergers (Ha, Ha right). During this time from 4 months to 6 months I began to notice that he never smiled and did not make any sounds, no need to worry because boys are naturally slow (right?). My son also started to get nose bleeds and I was told by the doctor not to worry because my son was probably picking his nose and causing himself to bleed (note: my son could barely stick his thumb in his mouth and hated anyone touching his face). Over and over I called the doctor and complained that the nose bleed’s were continuing, I was now told this was probably viral (don’t you just love how doctors always say virus when they have no clue). Around 9 months old I was starting to get really mad, I had zero speech or sounds and he was not crawling. Once again I went back to the doctor and made them draw blood to look for a problem, the doctor came back into the room and looked sheepishly at me with the results. I wanted to hit him with my diaper bag when he told me that my son’s platelet count was 30,000 ( normal is 250,000 to 350,000). I was immediately recommended to a hematologist to rule out cancer. I was so scared that this little person who had stole my heart was dying, I prayed, cried and tried to muddle through. I was told by the hematologist that my son has thrombocytopenia (low platelet count, duh…). The doctor could not explain why or how this had happened so more tests were needed. While the testing was done my little 9 month old baby was not allowed to get or drink for over 6 hours. The nursing staff complemented me on how well behaved my kid was because he had not cried once during this time when he was not allowed to eat or drink ( I was so proud of my little tough guy, should have seen the signs but no). The nose bleeds ended up being from vaccinations and his low immune system. I was then told that he had some developmental delays and it was probably from having thrombocytopenia for so long, it would take over one year for his platelet count to come back up. During this time he started crawling and saying mama, baba and lots of grunting. The doctor made an appointment for Early Intervention to evaluate my son for speech delays. My baby had started spinning everything he could get his hands on and showing little interest in regular toys or play. I would call his name over and over but he seemed like he could not hear me. Early Intervention came to evaluate him just after his first birthday and said he qualified for speech therapy one a week and occupational therapy every two weeks for Sensory Processing Disorder. I was crushed by the news that my beautiful boy was having “problems” and I started to get educated really quick about his condition. I read every book and every article on the internet about Sensory Processing Disorder. I was becoming the crazy parent that spent all my free time researching sensory and what I could do to “fix” the problem. My family was starting to think I was getting a little to obsessed with his sensory issue and told me that he would just grow out of it. The therapy had started but after months I was getting nowhere, no more words and having a more difficult time getting my child to go out into the world. My little guy’s platelet count was getting better and was told that I should give him the MMR vaccine because God forbid I let him get mumps or rubella. Like the good parent I was I let them vaccinate him and guess what???? My baby lost all speech and started toe walking and falling a lot. I was starting to feel like a failure as a parent and felt I had no one who could understand my fears. I lost my occupational therapist and was told to wait until EI found another therapist for me. Sorry, but anyone who knows me will understand that I could not wait and I went to find a therapist on my own. I contacted Sarah to evaluate my son for treatment (Sarah is the co-owner of Children’s Therapy Connections). Sarah met with us in March of 2011 and listened to me and watched my son attempt to play. I expressed my need for help and I think she sensed my hopelessness about my son’s progress so she flat out told me that I needed a diagnostic done because she believed my son was autistic. WHY had no one told me this before!!!! The speech therapist that was seeing my son at the time said that she suspected that he had autism but was afraid to tell me ( are you kidding me ), I kicked her out of my house after that. I was starting to spiral into depression at this news and thought what else would happen to my baby. I told myself to get up and fight and stop feeling sorry for myself, but all I could think about is that my precious boy would have a very difficult life and I had no idea how to help him. Thoughts of my son never joining a team to play sports, never enjoying a rock concert because there where too many people, having a hard time making friends or dating because of social difficulties plagued my mind. I would watch him sleep and cry about all the dreams I had for him that would never come true. Sarah pulled my kicking and screaming back into reality and made me fight and work to help my son. I felt I had an ally that would weather the up’s and down’s of autism with me. My family was supportive but I think that you need people in the trenches who know exactly what you are going through to make you see the light. My son is a fighter and he makes me be a stronger person by watching him struggle for every milestone he reaches. We still have bad days but I know I have a strong team that will be there every step of the way and support me and my little hero. I think about autism every day because it impacts my life everyday and if that makes me a little obsessive I really don’t care. I want to help every child and parent affected by developmental delays and be the support and guidance that they need. I don’t have all the answers but I think together we can help one another to make this journey easier. I am thankful everyday for my smart, caring, sweet boy and believe that I was given him for a reason. I was the parent that had never heard mommy I love you or had a hug or a kiss. Being around my friends that had typical children became increasingly difficult, I still have a hard time listening to them talk about their child’s achievements. With hard work and a lot of tears (both my son’s and mine) he is improving each day. I now hear Mommy all day and will get some hugs but kisses are few and far between. His speech has improved and he is starting to ask for things and help, he has about 50 to 100 words. Getting him to talk was one of the hardest things and we still struggle and have to prompt him to speak. Sensory issues and socialization are improving and we can now visit friends and family without tears and fear. The toe walking has stopped and he runs and jumps on everything, including my couch. I see Dr. Cindy Howard our holistic doctor for supplements and treatments that have helped him with focus, eye contact and smiles that increase everyday. The therapies are now less about tears and more about improving his delays. My beautiful boy still had bad days but they are getting better as the months pass. I still struggle with fears about his life but I am more optimistic that he can reach his full potential. I want our clinic to be a safehaven for children and parents to get the help and support they need with love and trust. My family and especially my husband and my mom have helped me to realize that no one has to go through this alone (sometimes I think my son wants my mom around more than me) but I get it. My mom has a special bond with my son that transcends the grandmother/grandchild relationship, he trusts her and that is difficult for a person with autism. I want parents to come and get the knowledge they need to help their child because in the beginning I had no one but google and until I met Sarah felt I was one my own. Together everyone achieves more and we are here to help and just listen. I will post more later.
Thanks for listening- Kate

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