Learning that your child has developmental delay or disability can be a stressful experience. Parents may feel frustrated, anxious, sad, or helpless. This can both impact the well-being of the family and further affect the development of the special needs child.
Early intervention helps build a nurturing and supportive environment for the entire family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance his or her development.
Missouri First Steps families share their stories about how the early intervention services have enriched their lives.
On December 11, 2014, I sat on a leather couch in a small room with my husband to my left, toys and puzzles to my right, a psychiatrist directly across from me, and my non-verbal almost 2 year old Jonah behind her repetitively opening and closing the doctor’s cabinet door, which was one of his many little quirks that brought us to her office. While listening to her tell me my beautiful little boy had autism, I couldn’t contain my tears. She assured me that he was the same little boy that I brought in, and I informed her that while that was true, his momma on the other hand was different person. In that moment, I took on the role of a “special needs” parent. She handed me a pamphlet and told me to call a number for early intervention, and come back in 3 months to make sure we “didn’t fall through the cracks.” That was the last time we heard from that doctor…we fell through the cracks. My husband and I walked out of there helpless.
I’ve been in the medical field for over 12 years and one short paragraph on autism is all I found in my pediatric textbooks. It only mentioned words like “non-verbal”, “no emotions” and “institution”. I felt completely lost, but knew my son deserved for me to give him every opportunity I could. I called that number and set him up for an evaluation through First Steps.
We knew for awhile things were different with Jonah. My bright young boy was a couple weeks shy of turning two, and we were still waiting on him to say his first words…up until this point, he only hummed. He had multiple sensory issues and screamed a lot while banging his head. After our First Steps evaluations, Jonah was set up with the therapies he needed. During the next year, between First Steps, Easterseals, and private therapy, Jonah had six therapists who worked with him. Slowly we chipped away at him and watched this amazing boy bloom. Every night I prayed for my sweet boy, “Please help him to reach his full potential.” I prayed for his big brother, “Help us not let him get lost in the shuffle.” I prayed for his baby brother growing inside of me,”Please let this baby be exactly what Jonah needs to thrive.” I watched his speech slowly take off…the words slowly came. “Dada” first, then “mama”, then “earth”. It was hard, and we had many challenges and tough days, but we were seeing progress.
Seven weeks before I was due with my youngest son Gideon, he decided to make a surprise entrance. He has been full of surprises! “Surprise, you’re having another baby.” “Surprise, I’m coming 7 weeks early.” “Surprise, I’m hiding a little secret.” Late at night on March 26, 2015, my OB and my baby’s NICU doctor came in our room. “Your baby is doing great! His lungs are good, he is breathing fine…we think he has Trisomy 21.” Jonah flourished during our four-week hospital stay. I often joke that he knew that his momma wasn’t home and in order to survive, he’d have to start saying words. Around our third week in the NICU, the social worker brought me a packet. I laughed a bit when she talked about First Steps and how they could help up with Gideon. I told her about my Jonah, and how our wonderful service coordinator had already been here to get the paperwork rolling so Gideon could start therapy as soon as he got home. Although, I am pretty sure the main reason the social worker made the visit was to take a peek at Gideon–the paperwork was just a technicality.
This past May , we sat down for Jonah’s final IEP meeting at school. There is nothing more they can offer him. Jonah has tested so high, he no longer qualifies for Early Childhood Special Education. Jonah goes to Head Start and an afternoon program to help develop his social skills, but he is no longer in any type of therapy. I know for a fact we would not be here today without early intervention and our time with First Steps.
Today , Gideon is two and a half and has physical therapy, occupational therapy, and speech therapy, which has been exactly what he has needed. We are wrapping up our time with First Steps and transitioning him to Early Childhood Special Education. It will take us longer to see the full impact of early intervention with Gideon. I know, without a shadow of a doubt, he will show tremendous advancements thanks to the therapies we started at such an early age. I am so thankful for our time with First Steps and the relationships we have made. Our team has become our family. They love all three of my boys as much as we love them. My role as a “special needs mom” that began almost three years ago has introduced me to many families who have children that would benefit from early intervention. I encourage any parent with a child that shows delays to contact First Steps for an evaluation.
When Jonah started therapy, my oldest son Silas was getting out of the car one day and said to me, “Mom-Mom, I can do all the things I can do. I can do all the things!” That cute little phrase from my 4 year old ended up being a family motto…“You can do all the things you can do.” Each child deserves the chance to reach their full potential, and to do all the things they can do.
Our journey with First Steps was Fantastic! At first, Brooklyn wasn’t walking, talking, or doing things she was supposed to be doing at her age. Without First Steps Brooklyn would not be where she is today. I am so thankful for First Steps and the things they did for her and us as a family. Brooklyn today, now walks, she talks more, and everything else that a 3-year-old can do! It’s amazing.
Our son was in the First Steps program. He was born blind. We started making our IFSP when he was one month old and had our first visit with his Orientation & Mobility Specialist when he was two months old. Our First Steps Coordinator was very helpful with connecting us to the appropriate services for our son. They provided us with a very knowledgeable and skilled Orientation & Mobility specialist that helped our son become he thriving independent individual he is today. She also taught us skills we would need as a family to raise a blind child. Without the First Steps program our son would not be what he is now. He thrived because of the individuals who helped us starting at birth.
Having our second child was so exciting and we had this parenting thing down. After all, our older son was 20 months old when our daughter was born and we thought we were expert parents. When she was readmitted to the hospital 10 days after birth with meningitis we entered a new world we knew nothing about. After 18 months of worry, I self-referred to First Steps. Finally, the help and support we had needed for 18 months was available and there was someone to share the worry. She qualified immediately and we began a long journey of therapy including successes and setbacks with our early intervention heroes. Once a week (sometimes more) we spent time working on little things that added up to huge milestones. We spent days on the floor using odd devices I had never seen before, afternoons playing with bubbles and some form of corn starch messiness, trips to Target learning to sit up in a shopping cart, months perfecting sign language, and many hours on the phone discussing schools, transitions, meltdowns, etc. My daughter’s therapists became my friends… they were the first people I called after a neurologist appoint or a school evaluation; 3 years later this is still the case. We celebrated each milestone together (sometimes with cookies) and strategized over each opportunity for improvement. Her therapists visited her at the babysitters, her early intervention programs and even attended the transition meetings with me when she went to pre-school. In the fall, our daughter will be transitioning again, this time to mainstream kindergarten.
My daughter has an extremely special bond with these ladies and they will forever be in our hearts. When my third was born and wasn’t hitting milestones, I reached out again and we are back in the First Steps program. I feel so grateful for the First Steps resources and all Early Intervention programs. I have no doubt my daughter’s success is a result of the dedicated therapists she was lucky enough to work with.
Our daughter was born with a rare syndrome called Sturge-Weber. This syndrome causes seizures, glaucoma, and developmental delays. The first 5 months I didn’t notice anything unusual. Then she started to get behind. She was unable to sit on her own or transition from her belly or back to sitting up. We were in Illinois at this time and we were getting the process started there for services. About a month later we had to move and Missouri was right on it. First Steps stepped in and within a month she was getting PT, OT and Speech. I can’t say enough about all three of her therapists. They tried their best to work around our schedule and my daughter’s. Her PT worked her hard, but we saw great strides. All of her therapists worked with us and showed us what we could work on throughout the week to help her succeed. Though her progress was slow, I can say without a doubt she would not be crawling today without her PT help. Speech has also helped her. She still can’t say full sentences, but communication has come a long way from where we were at the beginning. She has a LOVE for listening to others read her books. I can also say without a doubt that her speech therapist helped to instill that love in her. About a year ago she received services with a vision therapist. With her glaucoma, we were unsure just how much she really was seeing. We needed to help train her eyes to look at things. Her vision specialist was a God-send. Within a very short time she was looking at the world around her and seemed to be more aware of how big the world was. This also helped to improve her speech and motor skills. I am very grateful for all her therapists. First Steps and all the therapists hold a special place in my heart, because without them, my daughter would not be able to do the things she does today.
When our 3rd son experienced complicated medical and neurological problems during infancy that affected his development, our pediatrician referred us to First Steps. For nearly 3 years, my son received therapy from knowledgeable and caring physical, occupational, and speech therapists. The support that we received was immeasurable. When he reached a goal or milestone, we all celebrated together, knowing that reaching that goal had truly been a team effort.
Having a child who has any type of special needs or developmental delays can be overwhelming to a parent, whether it is your first child, or your fourth child. There are some things that you are never completely prepared for. But First Steps provides support that makes those first few years with your child less overwhelming. First Steps didn’t just help my son reach goals and milestones; it helped me understand his strengths and weaknesses, and it helped prepare both of us for the transition into pre-school.
I will always be grateful for the services we received from First Steps and my son’s first therapists will always hold a very special place in my heart.
When my husband and I adopted our first child, he sure didn’t come with a set of instructions as to how to care for a special needs child. Here we are, new parents with a 2 ½ year old son who has been diagnosed with shaken baby syndrome, traumatic brain injury, mild CP, and a few other special issues. Our baby boy needed several services and we weren’t real sure where to turn for help. I searched the internet for resources and found out about First Steps.
First Steps stayed a part of our family over the next few years, as our family grew. Our next son we brought home was diagnosed with FAS, congenital heart defects, and failure to thrive. Our youngest, a girl, also has FAS. The IFSP teams helped all of our children and our family in unique ways. For our oldest son, it was helping us understand how important communication is for him and his success and supporting us in learning American Sign Language. For our younger son, it was overcoming profound sensory issues and the introduction of a rice and beans box to slowly desensitize him to aversive textures. For our daughter, it was the importance of the whole family becoming part of her tummy time – we would all get on the floor and play and have fun to keep her engaged and forget how much she hated it!
There is no doubt in my mind that my children wouldn’t have done as well if it wasn’t for the services they received from First Steps. In fact, all of the therapies that my daughter received with First Steps allowed her to attend kindergarten without an IEP. That was a goal I set for her while in First Steps and she was able to meet it.
My daughter had been a bit slow to hit all her milestones, but also went from beginning to mastery very fast (as in from first step to running in 3 days). I thought her speech would be the same. One day I realized I had been waiting for over 6 months for her speech to “catch up”, and I knew we needed some help. I was referred to First Steps for testing, and was impressed at how fast they responded. Everyone I worked with was knowledgeable, easy to talk to, and helped with all my concerns.
Our Speech Pathologist was a dream to work with. Every Friday she came to my house, sat on my floor with me and my daughter, and slowly coaxed language from her. I will never forget the glee in my daughter’s eye the first time she figured out how to add a final consonant sound (and the thrilled spark in our SLP’s eye too!) In the 12 months that my daughter received therapy, she went from having 17 words (9 of which were signs) to speaking 3 word sentences. The SLP even came with me to our first IEP meeting when we switched over to the Early Childhood program to help me understand all that needed to happen to insure my daughter continued to receive the care she needed. I will be forever grateful for all First Steps did to help my family.
I do not know where we would be without our First Steps therapists. My son was born with a cleft lip and palate and was diagnosed with failure to thrive as an infant. Little did we know, he had Celiac’s Disease as well. He has had a feeding tube and multiple surgeries, each one setting him back more and more. Our First Steps Dietitian, Speech Therapist, and Special Instructor worked together with our medical team. They monitored him closely and made sure we had all the resources we needed to get him on a road to good health. My son is now 2 and is getting ready to turn 3. I really do not know what I will do without them in our life. Our therapists have loved on our son as if they were his own. There is no better feeling as a mother than knowing your child is truly loved and cared for by their First Steps team. Not only are they amazing with children but they truly love what they do. They are passionate about helping children and families to be successful! He is healthy and strong and making progress everyday, I am so truly thankful for the services they have provided for the past 2.5 years.
Our son was not talking at all before he began working with his first steps ST. By the time he left the program he could say sentences that are 3-4 words! Sentences! He also received OT and ABA THERAPY. Those didn’t come until later but have been extremely life changing bc we finally started to learn the tools and skills we needed to help him progress. We have even continued on with his ABA therapist bc they have been so influential in his progress!
I have found working with the First Steps Coordinator, the Physical Therapist, Occupational Therapist, instructional trainer and Speech Therapist to have been invaluable in helping my son overcome many aspects of his rare chromosome disorder that we were told he would not. I am not just saying from just an educational point of view but from a parental psychological view. My son was diagnosed with Cri-du-chat at a month old. I am a very stong person, but this news shook me to my core. For the first 3 months, we felt sooooooo alone, like there was nobody to help us through. Once I was able to start meeting with these people that were not shocked by what he was experiencing and really were very positive all along saying he WOULD overcome these hurdles, I felt very comforted and was able to accept the challenges as just small hurdles and not huge mountains. Don’t get me wrong, you as a parent have to continue to practice what you learn from your therapists, every day all the time. Some days you just don’t want to but you MUST. Your education from the First Steps crew IS what will make your child be able to conquer the world in their own way. I just don’t know how a parent with a special needs child, even if it’s a mild and temporary issue can do with out First Steps. By the way, if you are detouring from getting involved w/ First Steps due to money; seriously, talk to the coordinator they WILL work with you to do what it takes to make it easy to pay or to not pay at all if you just can’t. DO IT! YOU WILL NOT REGRET IT!!