When your Special Needs Child gets a New Diagnosis

An Accurate Diagnosis is a Roadmap

Why do I Panic with a new diagnosis? Having an accurate diagnosis will help me get the right care for my son. It is a roadmap which will help me chart a path and get the right services for him. I’m panicking though. It is evaluation time. That darn Psychosocial Evaluation. You know when they ask those probative questions that you are supposed remember all the answers to? How old was your child when he first blinked? No, really they want to know that! How old was he when he said his first word? So I’m thinking, “Do you mean “Da-Da” or “french fry” because to me “Da-Da” was a reason to throw party in my house? When did he first roll over? And my favorite, “When did you first notice behavior that concerned you?” He is five and a half now so… I DON’T KNOW!! I don’t remember. Give me one more reason to feel like a failure as a mother. Ask me the last time he had a meltdown. Now that I remember. Ask me the last time he injured himself jumping and bouncing recklessly about the house. That I remember. It was just five minutes ago. New Doctor

Enter New Doctor

So New Doctor says “Tell me about your pregnancy.” Ummm… Isaiah is adopted, however, I do know some things about Birth Mothers pregnancy. She had no prenatal care, she was homeless, she was addicted to crack cocaine and she smoked cigarettes. He was a preemie, about six months…I think. He had crack in his system when he was born. That’s all I got. New Doctor begins running down a whole list of symptoms that to me were previously had to articulate. Each time he mentioned one I would say “yes”. As he continued going down the list my yeses got louder and more intense. My arms went up like “YES, finally somebody gets it!”New Doctor Drops a Bomb

New Doctor Drops A Bomb

New Doctor say “Have you ever heard of FASD or Fetal Alcohol Spectrum Disorder?” Didn’t I just tell him that Birth Mother was addicted to crack cocaine?” I was like “No, but she wasn’t a drinker. She smoked crack.” This is where New Doctor dropped some new information. He told me about the comorbidity of cocaine addiction and alcohol addiction. Something about the combination of the two gives you a more euphoric high. There is a perceived The percentage was more than 90%. Still skeptical, I resolved to get more intel. New Doctor said he would send out information for me to review. Ok! Do that! Gathering Intel

Gathering Intel

I was able to reach out to BM’s Mother. She was instrumental in having Isaiah placed with me and has remained an ally in this journey. I contacted her and asked about asked about the drinking. I fully expected her to say that she was not a drinker. The news was not what I expected. She told me BM has been drinking beer since she was 16. Yikes!! But wait, beer is just dirty water with bubbles, right? And how much damage could a beer do when it hardly has any affect on the person. I mean I’ve had beer before and not that I’m a big drinker but there was no adverse effect. Again, I was like nahhhh, this doesn’t compute. Beer?

Reading the Documentation

New Doctor sent over Six articles. I printed every one of them, put my glasses on and proceeded to read them carefully. I was really going to read them to prove that New Doctor was wrong. I flipped through looking for a list of symptoms. Immediately I found what I though proved Isaiah didn’t have this. Children with Fetal Alcohol Spectrum Disorders typically have distorted facial features, a smaller head, deformities, you know things you can see with the naked eye. My son doesn’t have any visible signs of disability. I kept reading. I came upon a passage that said “alcohol, wine and beer”. Screechhhhhhh….!!!!! Damnmmiittttt!!!!! Ok, I guess New Doctor knows what he is talking about. Now, I’m pissed!

A Mother Knows

I’m nervously sitting in the Pediatricians office with a new baby. Isaiah is about 7 months old and I am concerned. He is not meeting his milestones. As a matter of fact he has been missing them for some time now. I chalked it up to all babies will eventually get there and that some of them have a slow start. I tried to explain my concerns but she brushed them off and said he is just fine, developing normally. What did I know? I’m no Doctor. This went on for months before I got him evaluated by our city’s Early Intervention Services. She kept telling me there was nothing going on with him. After meeting with Early Intervention at least knew that he had Regulatory Sensory Processing Disorder.

How Many Pregnant Women are Drinking?

If a mother knows or suspects she is pregnant she should stop consuming all types of alcohol immediately to protect her fetus. 1 – 10 pregnant women in the U.S. have consumed alcohol in the past 30 days. 1 in 33 pregnant women have consumed 4+ alcoholic beverages at one time in the past 30 days. 1-5% of grad school children have on the the FASDs (Fetal Alcohol Spectrum Disorders). Less than 20% of children with prenatal alcohol exposure will present with dysmorphic facial features but the majority will present with neurodevelopmental/neurobehavioral challenges. Ok, New Doctor, I see you know your stuff.

Panic Setting In

Why am I panicking because we have a new diagnosis? Having a clear diagnosis will help me get the right care for my son. It will be a roadmap which will help me chart a path to get the right services for him. In the special needs community we encourage each other by saying things like, “At least you have a diagnosis now. It’s a roadmap. You can get the right treatment now.” I have said that to many moms. It just feels hollow now. I have a lump my throat. Don’t get me wrong. Having a diagnosis is better than fumbling around in the dark, which is what it feels like when you don’t know what is going on with your child. Could it be that I just don’t like this one. Are there more preferential disabilities? Did I prefer what I was told before? I don’t know but this lump won’t go away.

Labels on My Child

Isaiah has had one label or another hanging on him since he was born. I have come to terms with the fact that I have a special needs child and that I might be wiping his butt until he is 21. No really. If you are a special needs mom you know what I am talking about. I am a proactive Mom. I am involved in everything concerning my child. I am not passively sitting around letting life happen to us. I go to the meetings and follow up with the Doctors and the Therapists. They know me and respect me. They know Ms. Jones is serious and active in her son’s life. They know Ms. Jones wants the best for her child. I have been fortunate enough to have professional who become willing helpers.

Manifested Behaviors – The Incredible Hulk

My son is having a rough time in Kindergarten. I have been called to the school to pick him up at least ten days during the first three months. The other days they have had to call me and get me on the phone or FaceTime with him. I am able to calm him down and redirect him He has been getting angry and in true INCREDIBLE HULK fashion, you wouldn’t like him when he’s angry. He starts fighting. Not to hurt anyone but it is communication. He is stressed to the point of no return. Because he is unable to regulate his emotions he becomes unmanageable. If you are not a trained therapist this can appear scary, very scary. A child with these types of behaviors cannot be reasoned with. They try reasoning. It doesn’t work. The reports come back that my child is violet or violently doing whatever. In fact he is not violent at all.

Bruce Banner – I Mean the Real Isaiah

My son is a sweet, loving and generous boy. He is kind hearted and empathetic. He loves making new friends wherever he goes. He is polite and funny, a practical joker. His laugh is worth a million bucks and he even gives his toys away. When we are out shopping he will see items that he wants to purchase for his friends. He is five? What five year old is that kind and generous? He tells me he loves me two hundred times a day and gives me enough hugs and kisses that I could fill a vault. Reading none of this would make you think my son is violent. He is Bruce Banner.

What’s The Problem? Will we ever know?

• Neurocognitive Deficits – Executive Function, IQ/Cognition, Learning, Memory, Visual Spatial
• Problems with Self Regulation – Sleep, Self-Soothing, Anger Control, Attention and Impulse Control
• Delayed / Deficient Adaptive Skills – Social Skills, language, gross/fine motor, daily living skills
• Sensory Processing Disorder

The problem is that most of these symptoms are shared with other diagnoses. My son was diagnosed with ADHD and ODD which have many of the same symptoms. A second opinion was hard to get in the midst of Covid. Any appointment for evaluation was many months away. When we finally got an appointment the New Doctor was very thorough. He asked the right questions. His answers made sense in light of what I was seeing with my son’s behavior. What is frightening is all there is to learn. I have been gathering information for so long on the other diagnoses and felt I have a fairly good grasp on what I was dealing with. I was instructing his teachers and principal. based on that knowledge as well. I feel like I am starting at square one… Maybe that is why I have the lump in my throat.