Early Intervention Speech Therapy

Parents Speak, Part 2

Last week's post was the first of a series of posts that will present and discuss the results from my Early Intervention Parent Survey. The survey focuses on both the Birth to 3 and the 3 to 5 program, asking parents for feedback regarding their experiences and that of their child. Last week, I posted the parent responses regarding whether or not they felt the Birth to 3 program was therapeutically beneficial for their child. Today's post will look at two related topics: WHY each parent originally pursued early intervention services for their child and WHAT they would change and/or improve about the overall Birth to 3 experience.

So, when asked, what prompted you to originally seek Early Intervention services? The following responses were offered:

• I didn't want my child to be behind other kids, developmentally. My mother had recommended the service from previous experience.
• My son was very floppy and showed little interest in the things happening around him.
• We were homebound with our new baby due to his intense needs. We desperately needed therapy and medical intervention
• My son seemed not to be visually focusing on objects or faces as late as six months
• Delayed speech and motor skills that were later diagnosed as ASD
• My own concerns about my child's muscle tone (hyper tone) and not being at midline when at rest.
• Diagnosis of Autism. His doctor made the referral to Early Intervention. If my doctor had not been proactive, I may have missed out on this valuable resource.
• I was given Touchpoint's phone number by my son's pediatric neurologist that gave the diagnosis. Touchpoint said my son was too young and when I called back a second time they gave me the number for First Steps.
• Baby did not eat solids at all. Had a VERY hard time transitioning to formula from breast milk (took about 4 months). At the same time, baby was at risk for failure to thrive and was falling off growth curve.
• I knew that something was not right. My daughter was not meeting developmental milestones on time. I took her to specialist after specialist and had to fight for referrals. She was then fitted with a cranial helmet and received intervention. I find it discouraging that so many families have to fight so hard... I knew to keep pushing, but I hear so many times that families "just believed the doctors..."
• Services began at 7 weeks old (with PT) because he was born with a birth defect that would need immediate physical attention.
• The geneticist that was our daughter's doctor said it would be critical to her success.
• My son was not babbling or speaking at 15 months old
• My children were born 3 months premature and had developmental delays.

 

When asked, what would you change and/or improve about the experience? The following responses were offered:

• I would change the amount of time spent with the therapist. My particular early intervention program provided one hour of speech therapy once a week.
• I would have appreciated a little more information about the transition from the 0-3 program to the 3-5 program.
• My SLP would come in once a month. I would update her on difficulties my child has. She would say "yep that sounds like (child's name)" and leave with no therapy, no goals, no guidance and no one governing her close enough to keep her accountable. I would change our region to follow the law, include families in decision making, no bullying of families, and therapy that actually "intervenes early." It's so bad in my area that my family may talk to a lawyer.
• Nothing (parent noted that they would not change a thing)
• Unlimited hours as necessary. 1 hour per week for all therapy was not enough for my son to progress as fast or as far as he should have. The major accomplishments came upon entering the school district EI and receiving more time and being included in his classes.
• Increase frequency and/or duration of sessions.
• Make sure more parents know it's available, and make quality of care more consistent. I've heard from parents who had bad experiences, or felt the services they received were not beneficial.
• I would give increased amount of hours with hands-on and well informed therapists. Children with Autism need constant direct engagement. I would also have more organized information and resources for parents to be able to constantly ask questions via email or get additional tips to work with their kids outside of therapy time. I had to seek outside, private-pay help for speech and OT; that was much better than what First Steps in Missouri provided. The First Steps model should change.
• More integration of care between all providers (EI, feeding therapy, nutrition clinic, etc).
• The one thing I would change is reminding people that all children are different and that we do NOT KNOW what children's skills will look like in 1 to 2 years. I was told at 6 months old, by the PT that my daughter most likely had CP and then was told that she probably had a sensory processing disorder... Then I was told she would never walk. Had I not been a determined parent, maybe I wouldn't have pushed her so hard. Here we are one year later - no sign of disability!!!!!
• Not a thing! I wish the home services could have continued longer, not just because of the convenience, but because my son never had the same relationship with later therapists.
• I would have pushed for more services for my son.
• I would have like to see the therapists have more say than the service coordinators when it came to services for my children. I feel it was a struggle between the therapists (who saw the children frequently) and the coordinator (who met them quarterly) to receive necessary services.

As you can read, everyone's experiences are different and yet there are common themes that run through the various responses. I hope you find the survey responses interesting

Join me next Tuesday for more!